2,925 results
Search Results
2. Supporting a person-centred approach in clinical guidelines. A position paper of the Allied Health Community - Guidelines International Network (G-I-N)
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Simone A, van Dulmen, Sue, Lukersmith, Josephine, Muxlow, Elaine, Santa Mina, Maria W G, Nijhuis-van der Sanden, Philip J, van der Wees, and P J, van der Wees
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Biopsychosocial model ,Internationality ,Knowledge management ,business.industry ,Decision Making ,Allied Health Personnel ,Public Health, Environmental and Occupational Health ,Context (language use) ,Guideline ,Models, Psychological ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Outcome and Process Assessment, Health Care ,Quality of life (healthcare) ,International Classification of Functioning, Disability and Health ,Patient-Centered Care ,Practice Guidelines as Topic ,Nominal group technique ,Quality of Life ,Humans ,Medicine ,Position paper ,business ,Original Research Papers ,Goal setting - Abstract
Contains fulltext : 154033.pdf (Publisher’s version ) (Open Access) BACKGROUND: A person-centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. OBJECTIVE: To develop a position paper that promotes a person-centred approach in guideline development and implementation. DESIGN, SETTING AND PARTICIPANTS: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G-I-N conference. We analysed the data for relevant themes to draft recommendations. RESULTS: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person-centred approach in clinical guidelines emerged: (i) use a joint definition of health-related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision-making method, and (iv) incorporate patient-reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. CONCLUSION: This position paper describes essential elements for incorporating a person-centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person-centred care.
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- 2015
3. Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper
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Emery, Jon
- Published
- 2001
4. Evaluation of Public Involvement in Doctoral Research Using a Four‐Dimensional Theoretical Framework.
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Teodorowski, Piotr, Tahir, Naheed, and Ahmed, Saiqa
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PATIENT selection ,SOCIAL media ,RESEARCH funding ,HUMAN research subjects ,INTERVIEWING ,DATA analytics ,COMMUNITIES ,EXPERIMENTAL design ,CONCEPTUAL structures ,MEDICAL research ,RESEARCH methodology ,ORGANIZATIONAL change ,PATIENT participation ,COVID-19 pandemic - Abstract
Background: Working together and co‐production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. Objective: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. Methods: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four‐dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. Results: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. Conclusion: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. Patient and Public Involvement: Two public advisors were involved throughout the 3 years of this doctoral research. They co‐evaluated this involvement and are co‐authors of this paper. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Supporting a person-centred approach in clinical guidelines. A position paper of the Allied Health Community - Guidelines International Network (G-I-N).
- Author
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Dulmen, Simone A., Lukersmith, Sue, Muxlow, Josephine, Santa Mina, Elaine, Nijhuis‐van der Sanden, Maria W.G., and Wees, Philip J.
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MEDICAL personnel , *ALLIED health personnel , *ATTITUDE (Psychology) , *DECISION making , *DISCUSSION , *HEALTH status indicators , *INTERNET , *LIFE skills , *MATHEMATICAL models , *EVALUATION of medical care , *MEDICAL protocols , *NOSOLOGY , *QUALITY of life , *ADULT education workshops , *THEORY , *PATIENT-centered care - Abstract
Background: A person‐centred approach in the context of health services delivery implies a biopsychosocial model focusing on all factors that influence the person's health and functioning. Those wishing to monitor change should consider this perspective when they develop and use guidelines to stimulate active consideration of the person's needs, preferences and participation in goal setting, intervention selection and the use of appropriate outcome measures. Objective: To develop a position paper that promotes a person‐centred approach in guideline development and implementation. Design, setting and participants: We used three narrative discussion formats to collect data for achieving consensus: a nominal group technique for the Allied Health Steering Group, an Internet discussion board and a workshop at the annual G‐I‐N conference. We analysed the data for relevant themes to draft recommendations. Results: We built the position paper on the values of the biopsychosocial model. Four key themes for enhancing a person‐centred approach in clinical guidelines emerged: (i) use a joint definition of health‐related quality of life as an essential component of intervention goals, (ii) incorporate the International Classification of Functioning, Disability and Health (ICF) as a framework for considering all domains related to health, (iii) adopt a shared decision‐making method, and (iv) incorporate patient‐reported health outcome measures. The position statement includes 14 recommendations for guideline developers, implementers and users. Conclusion: This position paper describes essential elements for incorporating a person‐centred approach in clinical guidelines. The consensus process provided information about barriers and facilitators that might help us develop strategies for implementing person‐centred care. [ABSTRACT FROM AUTHOR]
- Published
- 2015
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6. Exploring Whether and How People Experiencing High Deprivation Access Diagnostic Services: A Qualitative Systematic Review.
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Vincent, Christine, Fenge, Lee‐Ann, Porter, Sam, and Holland, Sharon
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HEALTH services accessibility ,MEDICAL care use ,MEDICAL information storage & retrieval systems ,HEALTH literacy ,NATIONAL health services ,DIAGNOSTIC services ,RESEARCH funding ,SOCIAL determinants of health ,HEALTH attitudes ,CINAHL database ,SOCIOECONOMIC factors ,RESPONSIBILITY ,EMOTIONS ,EXPERIENCE ,SYSTEMATIC reviews ,MEDLINE ,THEMATIC analysis ,MEDICAL databases ,CONCEPTUAL structures ,HEALTH equity ,PATIENT decision making ,MEDICAL screening ,MINORITIES ,SOCIAL isolation ,PATIENTS' attitudes ,PSYCHOLOGY information storage & retrieval systems ,SOCIAL stigma - Abstract
Introduction: To contribute to addressing diagnostic health inequalities in the United Kingdom, this review aimed to investigate determinants of diagnostic service use amongst people experiencing high deprivation in the United Kingdom. Methods: A systematic review was conducted using three databases (EBSCO, Web of Science and SCOPUS) to search studies pertaining to diagnostic service use amongst people experiencing high deprivation. Search terms related to diagnostics, barriers and facilitators to access and deprivation. Articles were included if they discussed facilitators and/or barriers to diagnostic service access, contained participants' direct perspectives and focussed on individuals experiencing high deprivation in the United Kingdom. Articles were excluded if the full text was unretrievable, only abstracts were available, the research did not focus on adults experiencing high deprivation in the United Kingdom, those not including participants' direct perspectives (e.g., quantitative studies) and papers unavailable in English. Results: Of 14,717 initial papers, 18 were included in the final review. Determinants were grouped into three themes (Beliefs and Behaviours, Emotional and Psychological Factors and Practical Factors), made up of 15 sub‐themes. These were mapped to a conceptual model, which illustrates that Beliefs and Behaviours interact with Emotional and Psychological Factors to influence Motivation to access diagnostic services. Motivation then influences and is influenced by Practical Factors, resulting in a Decision to Access or Not. This decision influences Beliefs and Behaviours and/or Emotional and Psychological Factors such that the cycle begins again. Conclusion: Decision‐making regarding diagnostic service use for people experiencing high deprivation in the United Kingdom is complex. The conceptual model illustrates this complexity, as well as the mediative, interactive and iterative nature of the process. The model should be applied in policy and practice to enable understanding of the factors influencing access to diagnostic services and to design interventions that address identified determinants. Patient or Public Contribution: Consulting lived experience experts was imperative in understanding whether and how the existing literature captures the lived experience of those experiencing high deprivation in South England. The model was presented to lived experience experts, who corroborated findings, highlighted significant factors for them and introduced issues that were not identified in the review. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Patient‐Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation.
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Maas, Marjo J. M., Veltman, Joke, van der Wees, Philip J., Beijk, Cilia, Huinck, Wendy J., Groenhuis, Adinda Y. M., Versnel, Huib, Schuiling, Gertjan, and Hoetink, Alex E.
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COCHLEAR implants ,HUMAN services programs ,INTERPROFESSIONAL relations ,EVALUATION of human services programs ,MUSIC therapy ,DESCRIPTIVE statistics ,REFLEXIVITY ,THEMATIC analysis ,MEDICAL research ,HEARING disorders ,PATIENT participation ,SOCIAL participation ,VIDEO recording - Abstract
Background: The role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient‐led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi‐CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi‐CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi‐CI programme was supported by a consortium of professionals in CI rehabilitation and research. The aim of this paper is to describe and evaluate the Musi‐CI programme development process and its impact on professional CI rehabilitation and research. Methods: Programme development was described using a 3‐layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video‐recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis. Results: The involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI‐rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift. Conclusion: Experts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research. Patient or Public Contribution: The development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write‐up of the results, and co‐authored this paper. [ABSTRACT FROM AUTHOR]
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- 2024
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8. Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper
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Jon Emery
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Informed choice ,medicine.diagnostic_test ,business.industry ,Genetic counseling ,Perspective (graphical) ,Applied psychology ,Public Health, Environmental and Occupational Health ,MEDLINE ,Test (assessment) ,Paternalism ,Cancer screening ,Medicine ,business ,Social psychology ,Genetic testing - Abstract
Traditionally genetic counselling has promoted a non-directive approach to patients' decision-making but the feasibility of this has been questioned. Unlike most branches of medicine, which are shifting away from a paternalistic model, genetic counselling is approaching shared decision-making from a different perspective. There are certain features of genetic counselling and genetic testing which may complicate the drive towards shared decision-making and informed choice: 1. Genetic test results can have broader implications than non-genetic test results. 2. Genetic test results may be perceived by the patient differently to non-genetic test results. 3. Carrier status for autosomal recessive conditions may be difficult for patients to conceptualize. 4. Decisions in genetic counselling are often multiple and sequential. 5. Most information in genetic counselling is based on probabilities and uncertainties. Each of these features is discussed in relation to achieving shared decision-making in genetic testing and the implications for genetic counsellors are described. The points raised, however, have broader implications for medicine as several of the features, although central to genetic testing, are not entirely unique. Lessons learnt from genetic testing and genetic counselling in achieving shared decision-making could help develop methods of promoting informed choice in other medical arenas such as cancer screening.
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- 2001
9. Assessing collaborative efforts of making care fit for each patient: A systematic review.
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Kunneman, Marleen, Gravholt, Derek, Hartasanchez, Sandra A., Gionfriddo, Michael R., Paskins, Zoe, Prokop, Larry J., Stiggelbout, Anne M., and Montori, Victor M.
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MEDICAL databases ,MEDICAL information storage & retrieval systems ,PATIENT participation ,PHYSICIAN-patient relations ,SYSTEMATIC reviews ,HUMAN comfort ,MEDICAL protocols ,INTERPROFESSIONAL relations ,DECISION making ,RESEARCH funding ,DECISION making in clinical medicine ,MEDLINE ,PRAISE - Abstract
Introduction: For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit. Methods: We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real‐life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described. Results: We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions 'Patient‐clinician collaboration: content' (N = 396, 32%) and 'Patient‐clinician collaboration: manner' (N = 382, 31%) and the least related to 'Ongoing and iterative process' (N = 22, 2%) and in 'Minimally disruptive of patient lives' (N = 29, 2%). The items referred to 27 specific actions. Most items referred to 'Informing' (N = 308, 25%) and 'Exploring' (N = 93, 8%), the fewest items referred to 'Following up', 'Comforting' and 'Praising' (each N = 3, 0.2%). Discussion: Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care. Patient Contribution: Patients and caregivers from the 'Making care fit Collaborative' were involved in drafting the dimensions relevant to patient–clinician collaboration. [ABSTRACT FROM AUTHOR]
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- 2023
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10. Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease.
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Beresford, Cathy J., Rahman, Mahabuba, Gray, Yvonne, Ramshaw, Sandra, Gelling, Leslie, Baron, Sue, and Dominey, Jackie
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LIVER disease treatment ,SOCIAL media ,PATIENT selection ,RESEARCH funding ,INTERPROFESSIONAL relations ,DATA analysis ,DOCTORAL programs ,PATIENT psychology ,HUMAN research subjects ,DESCRIPTIVE statistics ,DECISION making ,MEDICAL research ,ATTITUDES of medical personnel ,ACQUISITION of data ,GROUNDED theory ,STAKEHOLDER analysis ,COMMITMENT (Psychology) ,PATIENT participation ,PATIENTS' attitudes ,CAREGIVER attitudes - Abstract
Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Involvement of people who use alcohol and other drug services in the development of patient‐reported measures of experience: A scoping review.
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van der Sterren, Anke E., Nathan, Sally, Rawstorne, Patrick, Yarbakhsh, Elisabeth, Gough, Chris, and Bowles, Devin
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ONLINE information services ,CINAHL database ,TREATMENT programs ,MEDICAL information storage & retrieval systems ,SUBSTANCE abuse treatment ,SYSTEMATIC reviews ,PRIVATE sector ,SATISFACTION ,HEALTH outcome assessment ,HARM reduction ,REHABILITATION of people with alcoholism ,RESEARCH funding ,LITERATURE reviews ,MEDLINE - Abstract
Introduction: Patient‐reported measures that assess satisfaction and experience are increasingly utilised in healthcare sectors, including the alcohol and other drug (AOD) sector. This scoping review identifies how and to what extent people accessing AOD services have been involved in the development of satisfaction and experience measures to date. Methods: PubMed, EMBASE, CINAHL, Scopus, ProQuest, Google and Google Scholar were searched. Included papers described the development and/or implementation of a multiple‐item measure of patient‐reported experience or satisfaction specifically for people accessing AOD treatment and/or harm reduction programmes. If there was more than one paper, key papers were chosen that described each measure. The method of development, including service user involvement, was assessed against a framework generated for this review. Two reviewers were involved at each stage. Results: Thirty measures—23 satisfaction and 7 experience—were identified. Sixteen measures reported some level of involvement by people accessing AOD services in their development, although, for most measures, at a relatively low level. This involvement increased over the time span of the review becoming more frequent in later years. Only four measures were developed for use in harm reduction‐specific settings, and fewer than half reported undertaking analysis of underlying scale structure and constructs. Conclusion: Several gaps could be addressed to enhance the measurement of patient‐centred care in the AOD sector, including: developing experience measures for use in harm reduction settings and across various AOD settings in a service system; improved reporting of psychometric properties of these measures and increasing commitment to the meaningful involvement of AOD service users in measure development. Patient or Public Contribution: This scoping review is part of a broader codesign project that involves a partnership between the peak organisation for AOD services and the peer‐based AOD consumer organisation in the Australian Capital Territory, Australia. These organisations are working closely together to engage with AOD service users, service providers and policy makers in this codesign project. As such, the Executive Director of the peer‐based AOD consumer organisation is involved as a co‐author of this scoping review. [ABSTRACT FROM AUTHOR]
- Published
- 2023
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12. Consultations With Muslims From Minoritised Ethnic Communities Living in Deprived Areas: Identifying Inequities in Mental Health Care and Support.
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Tannerah, Ashraf, Hazel, Oluwalolami, Desson, Sheree, Farah, Rahima, Kamil‐Thomas, Zalihe, Iqbal, Halima, Eames, Catrin, Saini, Pooja, and Bifarin, Oladayo
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MENTAL illness prevention ,HEALTH services accessibility ,HEALTH literacy ,MENTAL health services ,RESEARCH funding ,MEDICAL quality control ,PATIENT safety ,DIVERSITY & inclusion policies ,QUESTIONNAIRES ,CULTURAL competence ,POVERTY areas ,SOCIAL theory ,MUSLIMS ,THEMATIC analysis ,RACISM ,TRUST ,MINORITIES ,SOCIAL support ,HEALTH equity ,HEALTH promotion ,PATIENTS' attitudes ,SOCIAL stigma - Abstract
Background: Limited research concerning existing inequities in mental health care and support services in the United Kingdom captures perceptions and lived experiences of the significantly underrepresented Muslim population. Methods: Underpinned by social constructivist theory, we used consultation to facilitate public and patient involvement and engagement (PPIE) to identify inequities in mental health care and support experienced by Muslims from minoritised ethnic communities living in deprived areas in Liverpool, UK. The rationale was to (a) better inform standards and policies in healthcare and (b) provide a psychologically safe space to members of the Muslim community to share perceptions and experiences of mental health care and support services. To ensure trustworthiness of the data, member checking was adopted. This paper describes the procedure to achieving this consultation, including our recruitment strategy, data collection and analysis as well as key findings. Findings: Twenty‐seven consultees attended the women's consultation and eight consultees attended the men's consultation. Consultees were from Yemeni, Somali, Sudanese, Egyptian, Algerian, Pakistani and Moroccan communities and share the Islamic faith. Four key interlinked themes were identified from consultees' narratives: (1) broken cycle of trust; (2) an overmedicalised model of care; (3) community mental health prevention initiatives; and (4) culturally conscious training and education. Conclusions: The Muslim population has identified numerous barriers to accessing mental health support and there is a need to resource activities that would aid deeper understanding of mental health support needs through continuous and meaningful community initiatives. This would afford mental health practitioners and organisations opportunities for developing realistic anti‐racism strategies, effectively adopting social prescription, strengthening partnerships and collaborations aimed at supporting delivery of evidence‐based mental health care provisions to tackle mental health inequities. Patient and Public Involvement: This paper reports on the involvement and engagement of Muslims from minoritised ethnic communities living in the Liverpool city region. [ABSTRACT FROM AUTHOR]
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- 2024
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13. Working with public contributors in Parkinson's research: What were the changes, benefits and learnings? A critical reflection from the researcher and public contributor perspective.
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Lithander, Fiona E., Tenison, Emma, Jones, David Ashford, Stocker, Sue, Hopewell‐Kelly, Noreen, Gibson, Andy, and McGrath, Carmel
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ATTITUDE (Psychology) ,CONSUMER attitudes ,PARKINSON'S disease ,QUALITY of life ,COMMUNICATION ,MEDICAL research ,REFLECTION (Philosophy) - Abstract
Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper. [ABSTRACT FROM AUTHOR]
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- 2024
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14. The experiences of people with liver disease of palliative and end‐of‐life care in the United Kingdom—A systematic literature review and metasynthesis.
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Beresford, Cathy J., Gelling, Leslie, Baron, Sue, and Thompson, Linda
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META-synthesis ,CAUSES of death ,TERMINAL care ,PATIENT-centered care ,EXPERIENCE ,LIVER diseases ,SELF-efficacy ,COMMUNICATION ,RESEARCH funding ,LITERATURE reviews ,THEMATIC analysis ,PALLIATIVE treatment ,GREY literature ,SYMPTOMS - Abstract
Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]
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- 2024
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15. Moving towards social inclusion: Engaging rural voices in priority setting for health.
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Tugendhaft, Aviva, Christofides, Nicola, Stacey, Nicholas, Kahn, Kathleen, Erzse, Agnes, Danis, Marion, Gold, Marthe, and Hofman, Karen
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HEALTH policy ,MEDICAL information storage & retrieval systems ,RURAL conditions ,PSYCHOLOGICAL vulnerability ,MEDICAL care ,UNIVERSAL healthcare ,MANN Whitney U Test ,DECISION making ,DESCRIPTIVE statistics ,RURAL health ,DATA analysis software ,SOCIODEMOGRAPHIC factors ,SOCIAL integration ,HEALTH planning - Abstract
Background: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. Objective: To address this gap, we implemented a modified priority setting tool (Choosing All Together—CHAT) that enables individuals and groups to make trade‐offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. Methods: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. Results: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. Discussion: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. Public Contribution: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community‐ the study represents their priorities. [ABSTRACT FROM AUTHOR]
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- 2024
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16. ‘Dignity and respect’: An example of service user leadership and co‐production in mental health research
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Claudia Megele, Trish Hafford-Letchfield, Christine Khisa, Alison Faulkner, Sarah Carr, Rachel Cohen, Dorothy Gould, and Jess Holley
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Value (ethics) ,Adult ,Mental Health Services ,Medicine (General) ,media_common.quotation_subject ,Control (management) ,Context (language use) ,Hostility ,Safeguarding ,mental health service users ,Respect ,mental health research ,03 medical and health sciences ,Dignity ,0302 clinical medicine ,R5-920 ,RA0421 ,Special Issue Paper ,medicine ,Humans ,030212 general & internal medicine ,Qualitative Research ,media_common ,user‐led research ,Special Issue Papers ,business.industry ,adult safeguarding ,co‐production ,030503 health policy & services ,Mental Disorders ,survivor research ,Public Health, Environmental and Occupational Health ,Public relations ,Mental health ,Leadership ,Mental Health ,Special Issue on Mental Health ,ComputingMilieux_COMPUTERSANDSOCIETY ,medicine.symptom ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,Qualitative research - Abstract
This paper explores the methodological aspects of a user‐led study investigating mental health service user experiences of targeted violence and abuse (often called 'hate crime'). 'Keeping Control' was a 16‐month qualitative study, undertaken in the context of adult safeguarding reforms in England. By collecting data on service user concepts and experiences, the research sought to address a gap in research and practice knowledge relating to targeted violence, abuse and hostility against people with mental health problems. In this paper, we discuss the significance of the design and methodology used for this study, with a particular focus on the interviews with service users. The research was both user‐led and carried out in collaboration with practitioners and academics, a form of research co‐production. Our aim is to inform researchers, practitioners and policymakers about the value of user leadership in co‐productive research with practitioners, particularly for a highly sensitive and potentially distressing topic.
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- 2021
17. Coproducing Health Information Materials With Young People: Reflections and Lessons Learned.
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Faux‐Nightingale, Alice, Somayajula, Glenys, Bradbury, Charlotte, Bray, Lucy, Burton, Claire, Chew‐Graham, Carolyn A., Gardner, Aaliyah, Griffin, Alex, Twohig, Helen, and Welsh, Victoria
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HEALTH information services ,SOCIAL media ,AUDIOVISUAL materials ,PAMPHLETS ,INTERPROFESSIONAL relations ,RESEARCH funding ,DIFFUSION of innovations ,HUMAN services programs ,POST-acute COVID-19 syndrome ,TEACHING aids ,SCHOOLS ,EDUCATIONAL outcomes ,INFORMATION resources ,REFLECTION (Philosophy) ,ETHICS ,MATHEMATICAL models ,CONCEPTUAL structures ,VIDEOCONFERENCING ,PROBLEM-based learning ,HEALTH education ,THEORY ,STAKEHOLDER analysis ,MEDICINE information services ,PATIENT participation ,ACCESS to information - Abstract
Background: This paper describes and critically reflects on how children and young people (CYP) acted as public advisors to coproduce health information materials about Long Covid for younger audiences. This work was underpinned by the Lundy model, a framework which provides guidance on facilitating CYP to actively contribute to matters which affect them. Methods: Coproduction activity sessions took place with CYP in schools as well as video conferences with a CYP stakeholder group and CYP with Long Covid. Activities encouraged CYP to focus on the content, format, and design of materials and used problem‐based and collaborative learning to encourage engagement with the project. Using a range of methods and open discussion, CYP codesigned a series of Long Covid health information materials for younger audiences. Results: Sixty‐six CYP (aged 10–18), and two young adults were involved. CYP codesigned specifications for the final materials and provided feedback on early designs. The project led to the development of a series of health information materials targeted at CYP: a short social media campaign with six short videos and a 12‐page illustrated leaflet about Long Covid; released on social media and distributed in local area. All the CYP were positive about the project and their involvement. Discussion: Involving CYP led to the development of innovative and engaging information materials (influence). Developing rapport was important when working with CYP and this was facilitated by using approaches and activities to establish an environment (space) where the CYP felt comfortable sharing their views (voice) and being listened to (audience) by the adults in the project. Working with external groups who are willing to share their expertise can help the meaningful involvement of voices 'less heard'. Public Contribution: One CYP coapplicant contributed to the project design and facilitation of PPIE sessions, 64 CYP were involved in the PPIE sessions to design and feedback on materials. Two young adult media producers worked with CYP to produce these materials, another CYP supported this process. Three public contributors were involved in the preparation of this manuscript. [ABSTRACT FROM AUTHOR]
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- 2024
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18. Using co‐design methods to develop new personalised support for people living with Long Covid: The 'LISTEN' intervention.
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Jones, Fiona, Domeny, Anne, Fish, Jessica, Leggat, Fiona, Patel, Ian, McRae, Jackie, Rowe, Carol, and Busse, Monica E.
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INTERPROFESSIONAL relations ,HUMAN services programs ,SELF-management (Psychology) ,SELF-efficacy ,MEETINGS ,RESEARCH funding ,POST-acute COVID-19 syndrome ,CONCEPTUAL structures ,MATHEMATICAL models ,SOCIAL support ,THEORY ,EVIDENCE-based medicine ,GROUP process - Abstract
Introduction: Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no 'one size' of treatment is likely to be effective for everyone. Supported self‐management for the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation. Methods: We used the improvement methodology, Experience‐Based Co‐Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from 'Bridges Self‐Management' (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content. Results: People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments. Conclusion: We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the 'LISTEN' intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions. Patient and Public Contribution: The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper. [ABSTRACT FROM AUTHOR]
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- 2024
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19. Hard to reach? Methodological challenges researching vulnerable, gang‐involved, young people.
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Barker, Rhiannon, Bonell, Chris, and Melendez‐Torres, G. J.
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LIFESTYLES ,MENTAL health ,GOVERNMENT policy ,QUALITATIVE research ,HEALTH attitudes ,RESEARCH funding ,AT-risk people ,MOTIVATION (Psychology) ,HEALTH education ,RESEARCH ethics ,ADOLESCENCE ,ADULTS - Abstract
Introduction: Research with young people (YP) is ethically challenging and bound in a complex maze of issues relating to power, voice and representation. Such sensitivities mean that the challenges raised in researching marginalised YP are often hard to navigate. This paper reports on research carried out with YP to explore links between mental health, school exclusion and involvement in criminal gangs. It aims to provide a practical guide to negotiating some of the methodological and ethical challenges experienced. Method: In‐depth interviews conducted with 28 YP (aged 14–24 years) who were gang involved or seen to be at risk of gang involvement. Research was conducted in youth clubs, alternative provision and youth justice settings. Results: Observations/Reflections We reflect on how navigating ethics can create barriers to involving YP as primary informants in research. We consider why it is important to overcome these hurdles and how public engagement work with recognised gatekeepers and the use of creative interview methods can facilitate meaningful encounters, where YP feel able to share valuable insights into their lives. Conclusion: Alongside a number of specific learning points, the paper reflects on theories behind research with YP, including the need for recognition of power imbalances and reflexivity. It concludes with thoughts on the practical realities of achieving meaningful participation or an 'authentic voice' with marginalised groups and the importance of this in informing policy and practice. Patient or Public Contribution: The focus of this work was to collect experiences of YP who are recognised as gang‐involved or at risk of being so, with a view to informing health and education policies. The scoping study for the project involved extensive public engagement work with YP exploring and trialling suitable methods of accessing, recruiting and ultimately interviewing this target group. This is central to the discussion within the body of the paper. [ABSTRACT FROM AUTHOR]
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- 2024
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20. Insights and recommendations for working collaboratively and improving care in Alzheimer's disease: Learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council.
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Roeser, Jannice, Bayliss, Nikki, Blom, Marco, Croney, Ruth, Lanman, Lydia, Laks, Jerson, Lyons, Marco, Proulx, Lea, Tsatali, Marianna, Westerlund, Karin, and Georges, Jean
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CONSENSUS (Social sciences) ,PATIENT education ,INTERPROFESSIONAL relations ,MEDICAL quality control ,ALZHEIMER'S disease ,PSYCHIATRIC treatment ,FOCUS groups ,DIVERSITY & inclusion policies ,RESEARCH funding ,DECISION making ,DESCRIPTIVE statistics ,PATIENT-centered care ,QUALITY assurance ,NEEDS assessment ,PSYCHOLOGY of caregivers ,PATIENTS' attitudes ,PATIENT participation - Abstract
Background: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross‐sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. Objective: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. Results: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. Conclusions: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co‐create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. Patient or Public Contribution: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. Clinical Trial Registration: Not applicable. [ABSTRACT FROM AUTHOR]
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- 2024
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21. Young people's priorities for the self‐management of distress after stoma surgery due to inflammatory bowel disease: A consensus study using online nominal group technique.
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Saunders, Benjamin, Polidano, Kay, Bray, Lucy, Fisher, Tamsin, Corp, Nadia, McDermott‐Hughes, Megan, Farmer, Adam D., Morris, Beth, Fleetwood‐Beresford, Sahara, and Chew‐Graham, Carolyn A.
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PREVENTION of surgical complications ,CONSENSUS (Social sciences) ,SCALE analysis (Psychology) ,FERTILITY ,SELF-management (Psychology) ,PSYCHOLOGICAL distress ,STRESS management ,RESEARCH funding ,MEETINGS ,SURGICAL stomas ,DESCRIPTIVE statistics ,EMOTIONS ,INFLAMMATORY bowel diseases ,EXPERIENCE ,SURGICAL complications ,VIDEOCONFERENCING ,SOCIAL support ,GROUP process ,INTIMACY (Psychology) ,ADULTS - Abstract
Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]
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- 2024
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22. Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.
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van Schelven, Femke, van Weele, Mara, van der Meulen, Eline, Wessels, Elise, and Boeije, Hennie
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DIGITAL technology ,HUMAN services programs ,INTERPROFESSIONAL relations ,RESEARCH funding ,EVALUATION of human services programs ,QUESTIONNAIRES ,DECISION making ,DESCRIPTIVE statistics ,CHRONIC diseases ,PATIENT-centered care ,TELEMEDICINE ,COMMUNICATION ,PATIENT-professional relations ,ADULT education workshops ,PATIENT participation - Abstract
Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co‐researchers in the research team, various groups of YPCC were involved in decision‐making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. Results: Initially, the two co‐researchers were involved in the roles of informer and co‐thinker, but their decision‐making power within the study increased over time. In the final stages of the study, the co‐researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co‐thinkers in all stages of the study. Conclusion: The PPI of two YPCCs as co‐researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. Patient or Public Contribution: YPCC played a significant role in the present study. Two YPCC—who are also co‐authors of this paper—were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session. [ABSTRACT FROM AUTHOR]
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- 2024
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23. ‘No‐one has listened to anything I’ve got to say before’: Co‐design with people who are sleeping rough
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Patrick 'Spike' Chiappalone, Bridget E Kelly, Virginia Lewis, and Robyn Mullins
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Medicine (General) ,Process (engineering) ,Social issues ,03 medical and health sciences ,0302 clinical medicine ,Documentation ,R5-920 ,Intervention (counseling) ,Surveys and Questionnaires ,Humans ,030212 general & internal medicine ,Set (psychology) ,housing ,Medical education ,Data collection ,Event (computing) ,030503 health policy & services ,homeless persons ,Public Health, Environmental and Occupational Health ,Australia ,Project team ,Research Personnel ,social problems ,Original Research Paper ,Ill-Housed Persons ,qualitative ,co‐design ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Sleep ,Original Research Papers - Abstract
Background Despite policies and programmes aimed at housing people who are homeless, there are still people who live and sleep rough. This project used the skills and knowledge of people in this situation to identify a strategy to mitigate some of the risks. Objective To describe the development and conduct of a co-design project involving people who are homeless. Setting/group members A Working Group of 11 was formed following a careful recruitment process from people who had volunteered after consultation by the project team. The co-design approach was guided by a set of principles. Methods Eight members of the Working Group were interviewed by an external researcher (RM). The approach was primarily deductive, with the principles adopted by the project team used as a framework for data collection and analysis. The co-design process was captured by the project leaders (BK, PC) supplemented with documentation review and team discussions. Results The group met weekly for 12 weeks, with 8-10 members present on average. They reviewed information from the survey, contributed ideas for solutions and ultimately decided to provide information via print, a website and an event. Important factors in on-going involvement were carefully selecting group members and making participation rewarding for them. Discussion/conclusions Vulnerable people such as those experiencing homelessness can be excluded from decision-making processes affecting them, as they can be perceived as hard to reach and unable to make a meaningful contribution. This project demonstrated that a carefully managed project, with sufficient resources and commitment, it was possible to involve people who are homeless and maintain involvement over an extended time period. Public contribution The Working Group reviewed survey findings and developed an intervention to minimize the health, social and legal harms of sleeping rough. Several members reviewe this paper.
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- 2021
24. Living with epidermolysis bullosa: Daily challenges and health‐care needs
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Ann Donohoe, Eilish McAuliffe, and Sandra Kearney
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Adult ,Parents ,Gerontology ,Population ,barriers to care ,03 medical and health sciences ,Broad spectrum ,0302 clinical medicine ,Skin fragility ,Health care ,medicine ,Humans ,030212 general & internal medicine ,Epidermolysis bullosa ,Child ,education ,Service (business) ,lcsh:R5-920 ,education.field_of_study ,business.industry ,lcsh:Public aspects of medicine ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,lcsh:RA1-1270 ,medicine.disease ,Psychosocial support ,Original Research Paper ,health‐care needs ,Distress ,Caregivers ,lived experience ,Health Facilities ,lcsh:Medicine (General) ,0305 other medical science ,business ,Psychology ,Delivery of Health Care ,Original Research Papers - Abstract
Background & Objective Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results Participants’ needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition.
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- 2020
25. Influence of patient and hospital characteristics on inpatient satisfaction in China's tertiary hospitals: A cross‐sectional study
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Zijuan Wang, Shiyang Liu, Hui Ding, Linlin Hu, Yuanli Liu, and Guangyu Hu
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Adult ,Male ,medicine.medical_specialty ,China ,patient satisfaction ,Cross-sectional study ,Staffing ,Insurance type ,demographic characteristics ,Logistic regression ,hospital performance ,hospital structure ,Tertiary Care Centers ,03 medical and health sciences ,0302 clinical medicine ,Patient satisfaction ,Surveys and Questionnaires ,Medicine ,Humans ,030212 general & internal medicine ,Aged ,Service quality ,Inpatients ,Chinese health care ,lcsh:R5-920 ,Descriptive statistics ,business.industry ,030503 health policy & services ,lcsh:Public aspects of medicine ,Public Health, Environmental and Occupational Health ,lcsh:RA1-1270 ,Middle Aged ,Original Research Paper ,Cross-Sectional Studies ,Socioeconomic Factors ,Family medicine ,Female ,Nursing Care ,0305 other medical science ,business ,lcsh:Medicine (General) ,Original Research Papers - Abstract
Background Patient satisfaction has been seen as a key criterion when evaluating hospitals and is one of the main focuses of the current health‐care reform in China. This paper aimed to explore patient‐ and hospital‐level factors associated with inpatient satisfaction, which can provide policy implications for the evaluation and development of a patient‐oriented health‐care system. Methods The paper analyses data from the 2017 China National Patient Survey which includes 20 300 inpatients from 131 tertiary hospitals across 31 provinces. Descriptive analysis and multivariable logistic regressions are conducted to identify key factors related to satisfaction. Results Patient sociodemographic characteristics, including gender, age, income and insurance type, are found to be strongly associated with their satisfaction of inpatient experience. In terms of institutional characteristics, hospital type, size, staffing and financial performance are also significantly correlated with inpatient satisfaction. Patients are more satisfied with specialist hospitals and large hospitals measured by the number of beds and surgeries. Hospitals with higher nurse‐to‐bed ratio also receive more satisfaction. The financial performance of hospitals, however, is negatively associated with satisfaction. Conclusion Patient satisfaction contains unique information on service quality and thus should be incorporated into the matrix of hospital evaluation. Meanwhile, differences in patient composition must be adjusted to make fair comparisons across hospitals. Moreover, future reform needs to put greater efforts in the design of comprehensive public insurance scheme, efficient hospital structure and an overall well‐functioning health‐care delivery system in order to better serve patients in China.
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- 2020
26. Patient, carer and family experiences of seeking redress and reconciliation following a life‐changing event: Systematic review of qualitative evidence.
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Shaw, Liz, Lawal, Hassanat M., Briscoe, Simon, Garside, Ruth, Thompson Coon, Jo, Rogers, Morwenna, and Melendez‐Torres, G. J.
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LIFE change events ,CAREGIVER attitudes ,DISCLOSURE ,CINAHL database ,SOCIAL support ,EMPATHY ,SYSTEMATIC reviews ,PATIENT-centered care ,SOCIAL justice ,EXPERIENCE ,PATIENTS' attitudes ,FAMILY attitudes ,INTERPERSONAL relations ,RESEARCH funding ,ADVERSE health care events ,MEDLINE ,TRUST - Abstract
Introduction: We conducted a systematic review of qualitative evidence to improve understanding of the processes and outcomes of redress and reconciliation following a life‐changing event from the perspectives of individuals experiencing the event and their families. Methods: We searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life‐changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. Title and abstract and full‐text screening were undertaken independently by two reviewers. Data extraction and quality appraisal were conducted by one reviewer and checked by a second. We used a best‐fit framework synthesis approach, drawing upon procedural and restorative justice concepts. Findings: Fifty‐three studies (61 papers) were eligible for inclusion. Forty‐one studies (47 papers) were included in the synthesis, from which we identified four themes. Three themes 'Transparency', 'Person‐centered' and 'Trustworthy' represent the procedural elements required to support a fair and objective process. The fourth, 'Restorative justice' encapsulates how a fair process feels to those who have experienced a life‐changing event. This theme highlights the importance of an empathic relationship between the different parties involved in the redress‐reconciliation process and the significance of being able to engage in meaningful action. Conclusion: Our findings highlight the procedural aspects and context of redress‐reconciliation processes required to ensure that the process and outcomes are experienced as fair. These criteria may be applied to the processes used to investigate both recent and historical patient safety events. Public Contribution: One member of the public affiliated with the Exeter Policy Research Programme Evidence Review Facility helped develop the review protocol. Two people with experience of medically life‐changing events provided insight which corroborated our findings and identified important limitations of the evidence included in this review. [ABSTRACT FROM AUTHOR]
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- 2023
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27. Identifying coping strategies used by patients at a transgender health clinic through analysis of free‐text autobiographical narratives
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Louise Mullany, Lucy Jones, Alison Pilnick, Jon Arcelus, Angela Zottola, and Walter Pierre Bouman
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Male ,Value (ethics) ,Medicine (General) ,media_common.quotation_subject ,Applied psychology ,secondary care ,coping strategies ,03 medical and health sciences ,Presentation ,R5-920 ,0302 clinical medicine ,Adaptation, Psychological ,Transgender ,Humans ,Narrative ,Prospective Studies ,030212 general & internal medicine ,Empowerment ,media_common ,Narration ,communication ,communication, coping strategies, empowerment, secondary care, transgender persons ,030503 health policy & services ,Transition (fiction) ,Public Health, Environmental and Occupational Health ,Gender Identity ,Original Research Paper ,empowerment ,Feeling ,Female ,transgender persons ,Health clinic ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers - Abstract
Background This paper presents an analysis of 32 narratives written by patients waiting for assessment at a transgender health clinic (THC) in England. Narratives are autobiographical free texts, designed to allow patients to describe in their own words their experiences of their gender identity and/or transition prior to a clinic appointment, as part of the assessment process. Objective Narratives were analysed to identify actions prospective patients had taken to manage their (usually lengthy) waiting times, so that these ‘coping strategies’ could be shared with future patients. Design Corpus linguistic methodology was utilized to identify common patterns across the whole corpus of text‐based data, augmented with more detailed sociolinguistic analysis of individual narratives. Results There are broad commonalities in the way the transition experience is described across the corpus in terms of presentation of key experiences and feelings. There are specific descriptions of a number of recurring coping strategies, both positive and negative. Conclusion The empowerment value of writing these narratives may be limited; the existence of recurring key features suggests that patients may feel they have to present their experiences in certain ways to be accepted for treatment. However, dissemination of some positive coping strategies may help future clients of THCs to better cope with waiting times, as well as assisting practitioners in THCs in supporting their patients during this wait. Patient/Public Contribution The clinic's Service Users’ Research Advisory Group contributed to formulating the objective and design of the study. Results were presented at the clinic's annual PPI conference.
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- 2021
28. An exercise intervention for people with serious mental illness: Findings from a qualitative data analysis using participatory theme elicitation
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Jennifer Badham, Paul Webb, Claire McCartan, Gavin Breslin, Liam Bradley, Jade Yap, Gavin Davidson, Christopher White, and Paul Best
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Data Analysis ,coproduction ,Applied psychology ,Population ,Physical activity ,Pilot Projects ,Northern Ireland ,Northern ireland ,03 medical and health sciences ,coproduction, SMI ,0302 clinical medicine ,SDG 3 - Good Health and Well-being ,exercise, participatory theme elicitation ,medicine ,Humans ,participatory theme elicitation ,030212 general & internal medicine ,education ,participatory data analysis ,education.field_of_study ,SMI ,exercise ,Exercise intervention ,Mental Disorders ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Citizen journalism ,Mental illness ,medicine.disease ,Exercise Therapy ,Original Research Paper ,Coproduction ,0305 other medical science ,Psychology ,Original Research Papers ,Qualitative research - Abstract
Background People with severe mental illness (SMI) often have poorer physical health than the general population. A coproduced physical activity intervention to improve physical activity for people with SMI in Northern Ireland was evaluated by co‐researchers (researchers with lived experience of SMI) and academic researchers using a new approach to participatory data analysis called participatory theme elicitation (PTE). Objective Co‐researchers and academic researchers analysed the data from the pilot study using PTE. This paper aimed to compare these analyses to validate the findings of the study and explore the validity of the PTE method in the context of the evaluation of a physical activity intervention for individuals with SMI. Results There was alignment and congruence of some themes across groups. Important differences in the analyses across groups included the use of language, with the co‐researchers employing less academic and clinical language, and structure of themes generated, with the academic researchers including subthemes under some umbrella themes. Conclusions The comparison of analyses supports the validity of the PTE approach, which is a meaningful way of involving people with lived experience in research. PTE addresses the power imbalances that are often present in the analysis process and was found to be acceptable by co‐researchers and academic researchers alike.
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- 2020
29. Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project
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Cathie Sudlow, Christin Bexelius, John Gallacher, Claire Tochel, Christophe Bintener, Dianne Gove, Anders Gustavsson, Jean Georges, Michael Sharwood Smith, Amanda Ly, Ana Diaz, and Mia Nelson
- Subjects
Medicine (General) ,Terminology ,Social group ,Constructive criticism ,03 medical and health sciences ,Personality changes ,0302 clinical medicine ,Quality of life (healthcare) ,R5-920 ,Surveys and Questionnaires ,medicine ,Humans ,Dementia ,030212 general & internal medicine ,patient involvement ,public participation ,Medical education ,patient engagement ,030503 health policy & services ,Perspective (graphical) ,Public Health, Environmental and Occupational Health ,Alzheimer's disease ,medicine.disease ,patient empowerment ,Original Research Paper ,Caregivers ,Public participation ,Quality of Life ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers ,dementia - Abstract
Background Dementia outcomes include memory loss, language impairment, reduced quality of life and personality changes. Research suggests that outcomes selected for dementia clinical trials might not be the most important to people affected. Objective One of the goals of the ‘Real world Outcomes across the Alzheimer's Disease spectrum for better care: Multi‐modal data Access Platform’ (ROADMAP) project was to identify important outcomes from the perspective of people with dementia and their caregivers. We review how ROADMAP's Public Involvement shaped the programme, impacted the research process and gave voice to people affected by dementia. Design The European Working Group of People with Dementia (EWGPWD) were invited to participate. In‐person consultations were held with people with dementia and caregivers, with advance information provided on ROADMAP activities. Constructive criticism of survey content, layout and accessibility was sought, as were views and perspectives on terminology and key concepts around disease progression. Results The working group provided significant improvements to survey accessibility and acceptability. They promoted better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings. They effectively expressed difficult concepts through real‐world examples. Conclusions The role of the EWGPWD in ROADMAP was crucial, and its impact was highly influential. Involvement from the design stage helped shape the ethos of the programme and ultimately its meaningfulness. Public contribution People with dementia and their carers were involved through structured consultations and invited to provide feedback on project materials, methods and insight into terminology and relevant concepts.
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- 2021
30. Involving people with type 2 diabetes in facilitating participation in a cardiovascular screening programme
- Author
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Jes S. Lindholt, Susanne Friis Søndergaard, Marie Dahl, Axel Cosmus Pyndt Diederichsen, Jens Søndergaard, and Trine Thilsing
- Subjects
Adult ,Medicine (General) ,Interview ,Social perspective ,Health Personnel ,Type 2 diabetes ,Screening programme ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,cardiovascular disease ,medicine ,Humans ,Mass Screening ,030212 general & internal medicine ,codes of ethics ,Qualitative Research ,Ethical code ,Medical education ,030503 health policy & services ,screening ,Public Health, Environmental and Occupational Health ,patient and public involvement ,Middle Aged ,medicine.disease ,Public involvement ,Original Research Paper ,Diabetes Mellitus, Type 2 ,Content analysis ,type 2 diabetes ,Patient Participation ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers ,Qualitative research - Abstract
Background: Knowledge is lacking about how to increase uptake among people with type 2 diabetes (T2D) invited to preventive initiatives like cardiovascular screening. Aim: To explore how to improve participation of people with T2D in cardiovascular screening using patient and public involvement (PPI). Methods: Patient and public involvement was included in a qualitative research design. From April to October 2019, we invited 40- to 60-year-old people with T2D (n = 17) to individual consultative meetings, using an interviewing approach. Before the interviews, participants were asked to read a proposed invitation letter to be used in a cardiovascular screening programme. Inductive content analysis was undertaken. Results: Participants considered cardiovascular screening important and beneficial from both a personal and social perspective. We found that the relational interaction between the person with T2D and the health-care professional was key to participation and that nudging captured through the design of the screening programme and the wording of the invitation letter was requested. Conclusion: In preventive initiatives perceived as meaningful by the invitee, a focus on recruitment is crucial to facilitate participation. This study contributed with knowledge about how to promote participation by involving health-care professionals in recruitment initiatives and through nudging. This knowledge may assist researchers, policymakers and ethicists' understanding and assessment of the ethical appropriateness and public acceptability of nudging in cardiovascular screening. Patient or public contribution: By consulting 17 people with T2D, we are now in a position to suggest how a screening initiative should be altered because tools to improve uptake have been identified.
- Published
- 2021
31. Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews
- Author
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Natalie N Anderson, Anna R. Gagliardi, Kerseri Scane, Robin Urquhart, Lesley Moody, G. Ross Baker, and Walter P. Wodchis
- Subjects
Medicine (General) ,Quality management ,Health Personnel ,Patient engagement ,Hospital planning ,quality improvement ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Humans ,030212 general & internal medicine ,Family engagement ,Patient participation ,Referral and Consultation ,patient‐centred care ,Medical education ,patient engagement ,030503 health policy & services ,Qualitative interviews ,Public Health, Environmental and Occupational Health ,3. Good health ,Original Research Paper ,Content analysis ,hospital planning ,patient participation ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,hospitals ,Original Research Papers ,qualitative research ,Qualitative research - Abstract
Background Patient engagement (PE) in health‐care planning and improvement is a growing practice. We lack evidence‐based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. Methods This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. Results Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2
- Published
- 2021
32. Navigating dietary advice for multiple sclerosis
- Author
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Lucinda J Black, Rebecca D Russell, and Andrea Begley
- Subjects
Gerontology ,Adult ,Medicine (General) ,media_common.quotation_subject ,Nutrition Education ,self‐determination theory ,multiple sclerosis ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,motivation ,medicine ,Humans ,030212 general & internal medicine ,autonomy ,Self-determination theory ,Qualitative Research ,media_common ,dietary modifications ,030503 health policy & services ,Multiple sclerosis ,Public Health, Environmental and Occupational Health ,medicine.disease ,Focus group ,Original Research Paper ,Spouse ,qualitative ,focus groups ,Thematic analysis ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,diet ,Original Research Papers ,Autonomy ,Qualitative research - Abstract
Background Multiple sclerosis (MS) is an inflammatory demyelinating disease with no known cure. Numerous diets are promoted to reduce symptoms or even cure MS, despite insufficient evidence for any therapeutic diet. There are few qualitative studies exploring the experiences of people with MS in relation to diet, and no use of theory to explain the findings. Purpose To explore the experiences of adults with MS when navigating dietary advice, their attitudes when making dietary decisions, and their needs regarding dietary resources and education. Methods In this qualitative study, we conducted six focus groups with people with MS (n = 33 plus one spouse without MS). Groups were audio-recorded and transcribed verbatim. Primary analysis used a general inductive approach with thematic analysis. Secondary analysis aligned themes with the constructs of the self-determination theory. Results Six themes emerged: (a) confusion about where to seek dietary advice; (b) scepticism towards national dietary guidelines; (c) personalized approaches to dietary change; (d) barriers to dietary changes; (e) judging if dietary changes work; and (f) wanting dietary guidelines for MS. Conclusion People with MS are highly motivated to make dietary changes and improve their health. The self-determination theory explained why people with MS make dietary modifications, and the varying levels of motivation. MS-specific dietary resources and nutrition education need to incorporate ways to increase autonomous forms of motivation. Future dietary intervention studies could use the self-determination theory as a framework to improve long-term adherence to healthier diets.
- Published
- 2021
33. 'A limpet on a ship': Spatio‐temporal dynamics of patient and public involvement in research
- Author
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Stan Constantina Papoulias and Felicity Callard
- Subjects
anthropology of meetings ,Medicine (General) ,media_common.quotation_subject ,ethnography ,Institutional logic ,03 medical and health sciences ,Presentation ,0302 clinical medicine ,R5-920 ,applied health research ,Ethnography ,Humans ,030212 general & internal medicine ,Set (psychology) ,Anthropology, Cultural ,media_common ,business.industry ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Public relations ,Mental health ,Research Personnel ,Original Research Paper ,Caregivers ,General partnership ,patient and public involvement (PPI) ,Patient Participation ,Apprenticeship ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,Original Research Papers ,Inclusion (education) ,mental health - Abstract
Objective: To understand how current funding expectations that applied health research is undertaken in partnership with research institutions, health service providers and other stakeholders may impact on patient and public involvement (PPI). Background: While there is considerable research on the potential impact of PPI in health research, the processes of embedding PPI in research teams remain understudied. We draw on anthropological research of meetings as sites of production and reproduction of institutional cultures and external contexts to investigate how these functions of meetings may affect the potential contributions of patients, carers and the public in research. Methods: We present an ethnography of meetings that draws from a larger set of case studies of PPI in applied health research settings. The study draws on ethnographic observations, interviews with team members, analysis of documents, and a presentation of preliminary findings through which feedback from informants was gathered. Results: We identified four means by which the oversight meetings regulated research and constrained the possibilities for PPI: a logic of ‘deliverables’ and imagined interlocutors, the performance of inclusion, positioning PPI in an ‘elsewhere’ of research, and the use of meetings to embed apprenticeship for junior researchers. Conclusions: PPI is essentially out of sync from the institutional logic of ‘deliverables’ constituting research partnerships. Embedding PPI in research requires challenging this logic.
- Published
- 2021
34. Opt‐in or opt‐out health‐care communication? A cross‐sectional study
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Vivien Tong, Stephen Robson, Parisa Aslani, and Ines Krass
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Adult ,medicine.medical_specialty ,Medicine (General) ,Interview ,Cross-sectional study ,Health Personnel ,Health literacy ,patient education as topic ,Opt-out ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,attitude to health ,Surveys and Questionnaires ,Health care ,medicine ,Humans ,health communication ,030212 general & internal medicine ,Health communication ,Service (business) ,business.industry ,Communication ,030503 health policy & services ,Australia ,Public Health, Environmental and Occupational Health ,Original Research Paper ,Cross-Sectional Studies ,Family medicine ,Duty of care ,consumer health information ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,Original Research Papers ,health literacy - Abstract
Background Patients need medication and medical condition‐related information to better self‐manage their health. Health‐care professionals (HCPs) should be able to actively provide information outside of one‐on‐one consultations; however, patient consent may be required. Objective To investigate the Australian public's preferences, and factors that may influence their preferences, towards an opt‐in versus an opt‐out approach to health communication. Design A cross‐sectional study using a structured questionnaire administered via Computer‐Assisted Telephone Interviewing. Setting and participants Participants across Australia who were adults, English‐speaking and had a long‐term medical condition. Main outcome measures Preferences for opt‐in vs opt‐out approach to receiving follow‐up tailored information. Results A total of 8683 calls were made to achieve the required sample size of 589 completed surveys. Many (346/589; 58.7%) indicated that they were interested in receiving tailored, ongoing follow‐up information from their HCP. Nearly half (n = 281; 47.7%) preferred an opt‐in service and 293/589 (49.7%) an opt‐out service for receiving follow‐up information. Reasons for preferring an opt‐in service were being in control of the information received (n = 254); able to make a decision that is best for them (n = 245); opt‐in service would save time for HCPs (n = 217); they may not want or need the information (n = 240). Many (n = 255) felt that an opt‐out service should be part of the normal duty of care of their HCP and believed (n = 267) that this approach would ensure that everyone has access to information. Conclusions Respondents were interested in receiving tailored information outside of consultation times. However, preferences for an opt‐in or opt‐out approach were divided.
- Published
- 2021
35. Analytic hierarchy process: An innovative technique for culturally tailoring evidence‐based interventions to reduce health disparities
- Author
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Isabella Chan, Claudia X. Aguado Loi, Jaime Corvin, Ian Dollman, and Junius Gonzales
- Subjects
Latino ,Medicine (General) ,Applied psychology ,Psychological intervention ,Analytic hierarchy process ,Health Services Accessibility ,03 medical and health sciences ,R5-920 ,0302 clinical medicine ,Intervention (counseling) ,Special Issue Paper ,Health care ,Humans ,Family ,030212 general & internal medicine ,Evidence-Based Medicine ,Special Issue Papers ,business.industry ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Stakeholder ,Hispanic or Latino ,Viewpoints ,United States ,Health equity ,patient driven ,disparity ,Special Issue on Mental Health ,depression ,Chronic Disease ,Pairwise comparison ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology - Abstract
Latinos in the United States represent a disproportionate burden of illness and disease and face barriers to accessing health care and related resources. Culturally tailored, evidence‐based interventions hold promise in addressing many of these challenges. Yet, ensuring patient voice is vital in the successful development and implementation of such interventions. Thus, this paper examines the application of analytic hierarchy process (AHP) to inform the augmentation and implementation of an evidence‐based chronic disease self‐management programme for underserved Latinos living with both minor depression and chronic illness. The process of AHP allows for direct input from the individuals that would utilize such a programme, including afflicted individuals, their family members and the health educators/promotores that would be responsible for implementation. Specifically, 45 participants, including 15 individuals with chronic disease, 15 family members/caregivers and 15 promotores, partook in the Stakeholder Values Questionnaire, which elicited preferences and values regarding major goals, processes and content for the intervention. AHP was employed to analyse pairwise comparison ratings and to determine differences and similarities across stakeholder groups. This analytical technique allowed for the adaptation of the EBI to stakeholders' specific priorities and preferences and facilitated complex decision‐making. Findings not only shed light on similarities and differences between stakeholder groups, but also the magnitude of these priorities and preferences and allowed the intervention to be driven by the participants, themselves. Applying AHP was a unique opportunity to optimize the decision‐making process to inform cultural adaptation of an EBI while considering multiple viewpoints systematically.
- Published
- 2020
36. Exploring factors influencing initiation, implementation and discontinuation of medications in adults with ADHD
- Author
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Parisa Aslani and Muhammad U. Khan
- Subjects
Adult ,medicine.medical_specialty ,Medicine (General) ,Social Stigma ,Medication Adherence ,03 medical and health sciences ,Cognition ,0302 clinical medicine ,R5-920 ,Medication cost ,Special Issue Paper ,medicine ,adults ,Humans ,ADHD ,030212 general & internal medicine ,adherence ,Psychiatry ,implementation ,Social functioning ,Special Issue Papers ,business.industry ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Focus group ,initiation ,Discontinuation ,Attention Deficit Disorder with Hyperactivity ,Special Issue on Mental Health ,qualitative ,Tailored interventions ,focus groups ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,discontinuation - Abstract
Background Adherence to ADHD medication is a complex phenomenon as the decision to adhere is influenced by a range of factors. To design tailored interventions to promote adherence, it is important to understand the factors that influence adherence in the context of its three phases: initiation, implementation and discontinuation. Objective The objective of this study was to explore the phase‐specific factors that influence adherence to medication in adults who have a diagnosis of ADHD. Methods Three focus groups (FGs) were conducted with twenty adults with ADHD in different metropolitan areas of Sydney, Australia. FGs were transcribed verbatim and thematically analysed. Results Participants’ decision to initiate medication (the initiation phase) was influenced by their perceived needs (desire to improve academic and social functioning) and concerns (fear of side‐effects) about medication following a similar process as defined by the Necessity‐Concerns Framework (NCF). The balance between benefits of medication (needs) and side‐effects (concerns) continued to determine participants’ daily medication‐taking (the implementation phase) and persistence (or discontinuation) with their medication. Forgetfulness and stigma were reported as concerns negatively impacting the implementation phase, while medication cost and dependence influenced the discontinuation phase of adherence. Conclusions Adults’ decision to initiate, continue or discontinue medication is influenced by a range of factors; some are unique to each phase while some are common across the phases. Participants balanced the needs for the medication against their concerns in determining whether to adhere to medication at each phase. It appears that the NCF has applicability when decision making about medication is explored at the three phases of adherence.
- Published
- 2021
37. Determinants of patient activation and its association with cardiovascular disease risk in chronic kidney disease: A cross‐sectional study
- Author
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Courtney J Lightfoot, Thomas J. Wilkinson, Jared Palmer, Alice C. Smith, and Katherine Memory
- Subjects
Male ,Nephrology ,Medicine (General) ,medicine.medical_specialty ,multimorbidity ,Cross-sectional study ,Disease ,03 medical and health sciences ,R5-920 ,0302 clinical medicine ,Quality of life ,cardiovascular disease ,patient activation ,Internal medicine ,Humans ,Medicine ,030212 general & internal medicine ,Renal Insufficiency, Chronic ,Socioeconomic status ,Aged ,Self-management ,business.industry ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,medicine.disease ,Obesity ,Original Research Paper ,Cross-Sectional Studies ,Cardiovascular Diseases ,self‐management ,Quality of Life ,Female ,cross‐sectional ,Public aspects of medicine ,RA1-1270 ,Patient Participation ,0305 other medical science ,business ,Original Research Papers ,chronic kidney disease ,Kidney disease - Abstract
Background Patient activation describes the knowledge, skills and confidence in managing one's own health. Promoting patient activation is being prioritized to reduce costs and adverse outcomes such as cardiovascular disease (CVD). The increasing prevalence of chronic kidney disease (CKD) presents a need to understand the characteristics that influence patient activation and the effect on health outcomes. Design Cross‐sectional study. Setting and participants Patients with non‐dialysis CKD recruited from 14 sites (general nephrology and primary care) in England, UK. Outcome measures Patient activation was measured using the PAM‐13. Demographic and health‐related variables, self‐reported symptom burden, health‐related quality of life (HRQOL), socioeconomic status (SES), were assessed as determinants of patient activation. Major CVD risk factors included hypertension, dyslipidaemia, obesity and hyperkalaemia. Results 743 patients were included (eGFR: 32.3 (SD17.1) mL/min/1.73 m2, age 67.8 (SD13.9) years, 68% male). The mean PAM score was 55.1 (SD14.4)/100. Most patients (60%) had low activation. Those with low activation were older (P
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- 2021
38. Shared decision making in consultations for hypertension: Qualitative study in general practice
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Gene Feder, Katrina M Turner, Helen Cramer, and Rachel Johnson
- Subjects
Medicine (General) ,medicine.medical_specialty ,hypertension ,General Practice ,Pharmacist ,Sample (statistics) ,Primary care ,decision making ,03 medical and health sciences ,R5-920 ,0302 clinical medicine ,shared ,medicine ,Humans ,030212 general & internal medicine ,Patient group ,Referral and Consultation ,Treatment choices ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Original Research Paper ,primary health care ,Family medicine ,General practice ,Observational study ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Decision Making, Shared ,Original Research Papers ,qualitative research ,Qualitative research - Abstract
Background: Hypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension.Aim: To understand patients’ and clinicians’ experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported.Design: Longitudinal qualitative studySetting: Five general practices in south-west England.Method: Interviews with a purposive sample of patients with hypertension, and with the health-care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio-recorded and observational field notes taken. Data were analysed thematically.Results: Forty- six interviews and 18 consultations were observed, with 11 patients and nine health-care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients’ understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations.Conclusion: For shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians.Patient or Public Contribution: A patient group contributed to the design of this study.
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- 2021
39. Aged care residents’ prioritization of care: A mixed‐methods study
- Author
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Kate Churruca, Kristiana Ludlow, Jeffrey Braithwaite, Louise A. Ellis, and Virginia Mumford
- Subjects
Medicine (General) ,aged care ,Staffing ,Qualitative property ,Sample (statistics) ,nursing homes ,decision making ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Nursing ,Surveys and Questionnaires ,priority‐setting ,Homes for the Aged ,Humans ,030212 general & internal medicine ,Open communication ,person‐centred care ,Aged ,Communication ,030503 health policy & services ,Information sharing ,Australia ,Public Health, Environmental and Occupational Health ,residential facilities ,Viewpoints ,Original Research Paper ,Content analysis ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Delivery of Health Care ,Original Research Papers ,Qualitative research - Abstract
Background Eliciting residents’ priorities for their care is fundamental to delivering person‐centred care in residential aged care facilities (RACFs). Prioritization involves ordering different aspects of care in relation to one another by level of importance. By understanding residents’ priorities, care can be tailored to residents’ needs while considering practical limitations of RACFs. Objectives To investigate aged care residents’ prioritization of care. Design A mixed‐methods study comprising Q methodology and qualitative methods. Setting and participants Thirty‐eight residents living in one of five Australian RACFs. Method Participants completed a card–sorting activity using Q methodology in which they ordered 34 aspects of care on a pre‐defined grid by level of importance. Data were analysed using inverted factor analysis to identify factors representing shared viewpoints. Participants also completed a think‐aloud task, demographic questionnaire, post‐sorting interview and semi‐structured interview. Inductive content analysis of qualitative data was conducted to interpret shared viewpoints and to identify influences on prioritization decision making. Results Four viewpoints on care prioritization were identified through Q methodology: Maintaining a sense of spirituality and self in residential care; information sharing and family involvement; self‐reliance; and timely access to staff member support. Across the participant sample, residents prioritized being treated with respect, the management of medical conditions, and their independence. Inductive content analysis revealed four influences on prioritization decisions: level of dependency; dynamic needs; indifference; and availability of staff. Conclusions Recommendations for providing care that align with residents’ priorities include establishing open communication channels with residents, supporting residents’ independence and enforcing safer staffing ratios.
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- 2021
40. Knowledge sharing to support long‐term condition self‐management—Patient and health‐care professional perspectives
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Sarah Brand and Stephen Timmons
- Subjects
Value (ethics) ,Health Knowledge, Attitudes, Practice ,Medicine (General) ,Health Personnel ,education ,long‐term conditions ,Context (language use) ,patients ,03 medical and health sciences ,0302 clinical medicine ,Professional Role ,R5-920 ,Nursing ,Health care ,Humans ,030212 general & internal medicine ,Self-management ,business.industry ,030503 health policy & services ,Self-Management ,Public Health, Environmental and Occupational Health ,Social environment ,Knowledge sharing ,Original Research Paper ,Caregivers ,self‐management ,Normative ,expertise ,health‐care professionals ,Thematic analysis ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,knowledge sharing ,Original Research Papers - Abstract
Background Increased self-management is a suggested solution to the burden on health-care services of long-term conditions (LTCs). This requires effective sharing of knowledge between health-care professionals and patients, and is an underexplored area. Objective To understand how patients and health-care professionals (HCPs) share and utilize knowledge in the social context of health-care interactions within long-term condition management. Methods Thematic analysis of 93 hours of observations of health-care interactions and 33 semi-structured interviews involving patients, carers and HCPs. Results 3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health-care context. Not all knowledge was easily shared within routine health-care interactions. Discussion The social context in which health-care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health-care interactions are limited. Conclusion Both patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working. Patient or public contribution Patients were involved in initial design of the study, particularly ethics of ethnographic observation.
- Published
- 2021
41. Providing culturally safe care to Indigenous people living with diabetes: Identifying barriers and enablers from different perspectives
- Author
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Sandro Échaquan, Maman Joyce Dogba, Marie-Claude Tremblay, Jean-Sébastien Paquette, Pascale Breault, Maude Bradette-Laplante, Emmanuelle Careau, and Holly O. Witteman
- Subjects
Medicine (General) ,Cultural safety ,Health Personnel ,Community-based participatory research ,barriers and enablers ,Indigenous ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Health care ,Diabetes Mellitus ,Humans ,cultural safety ,030212 general & internal medicine ,Sociology ,Social determinants of health ,Research question ,indigenous peoples ,diabetes ,business.industry ,Communication ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Public relations ,Original Research Paper ,Transformative learning ,community‐based participatory research ,healthcare inequities ,Thematic analysis ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Delivery of Health Care ,Original Research Papers - Abstract
In recent years, cultural safety has been proposed as a transformative approach to health care allowing improved consideration of Indigenous patient needs, expectations, rights and identities. This community‐based participatory study aimed to identify potential barriers and enablers to cultural safety in health care provided to Atikamekw living with diabetes in Québec, Canada. Based on a qualitative descriptive design, the study uses talking circles as a data collection strategy. Three talking circles were conducted with Atikamekw living with diabetes and caregivers, as well as with health professionals of the family medicine teaching clinic providing services to the community. Two team members performed deductive thematic analysis based on key dimensions of cultural safety. Results highlight four categories of barriers and enablers to cultural safety for Atikamekw living with diabetes, related to social determinants of health (including colonialism), health services organization, language and communication, as well as Atikamekw traditional practices and cultural perspectives of health. This study is one of the few that provides concrete suggestions to address key aspects of diabetes care in a culturally respectful way. Our findings indicate that potential enablers of cultural safety reside at different (from individual to structural) levels of change. Solutions in this matter will require strong political will and policy support to ensure intervention sustainability. Patient or public contribution Partners and patients have been involved in identifying the need for this study, framing the research question, developing the data collection tools, recruiting participants and interpreting results.
- Published
- 2021
42. 'I would not go to him': Focus groups exploring community responses to a public health campaign aimed at reducing unnecessary diagnostic imaging of low back pain
- Author
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Jolyn Hersch, Janet Harrison, Sweekriti Sharma, Adrian C Traeger, Elise Tcharkhedian, Christopher G. Maher, Kristen Pickles, and Ian A. Harris
- Subjects
Male ,medicine.medical_specialty ,Medicine (General) ,diagnostic imaging ,media_common.quotation_subject ,Health Promotion ,Medical Overuse ,Anger ,overdiagnosis ,03 medical and health sciences ,Presentation ,0302 clinical medicine ,R5-920 ,medicine ,Humans ,030212 general & internal medicine ,Overdiagnosis ,low back pain ,media_common ,general public ,Medical education ,030503 health policy & services ,Public health ,public health campaign ,Public Health, Environmental and Occupational Health ,Focus Groups ,Low back pain ,Focus group ,Original Research Paper ,Surprise ,Thematic analysis ,medicine.symptom ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers - Abstract
Background Community awareness of the harms of overdiagnosis remains low. Objective To evaluate community responses to a public health campaign designed for health service waiting rooms that focuses on the harms of unnecessary diagnostic imaging for low back pain. Methods We conducted two focus groups of 19 community members with or without low back pain in Sydney, Australia. This study formed the fourth and final stage of the development process of a public health campaign: (a) initial design, (b) expert review and revision, (c) online experiment and (d) community views & revision. We evaluated reactions to components of the campaign that included digital posters and an information leaflet using strong imagery and messaging about the risk of overdiagnosis. We conducted a qualitative thematic analysis to identify main themes. Results Community members reacted with surprise, initial mistrust, and occasionally anger towards imagery and messaging that suggested diagnostic imaging tests could be unnecessary and harmful. With further reflection and discussion, and after reading longer format information about overdiagnosis, the participants found some of the messages informative and useful. Participants appeared to gain a better understanding of the concept of overdiagnosis and the importance of not rushing to imaging. Conclusions Public health campaigns including posters and leaflets displayed in waiting rooms could raise awareness about overuse of diagnostic imaging and the harms of overdiagnosis more broadly. However, negative reactions are possible and must be managed carefully. Patient or public contribution We involved a community participation manager who provided advice on the focus group discussion guide, participant recruitment and manuscript presentation.
- Published
- 2021
43. Stakeholder involvement in the development of trial material for a clinical trial
- Author
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Jonathan Branney, Jacqueline Rix, Alexander Breen, Philip Sewell, and Sharon Docherty
- Subjects
Medicine (General) ,media_common.quotation_subject ,Consent Forms ,03 medical and health sciences ,0302 clinical medicine ,Documentation ,R5-920 ,Informed consent ,Reading (process) ,Font ,Humans ,030212 general & internal medicine ,media_common ,Medical education ,Patient and Public Involvement ,030503 health policy & services ,informed consent ,Public Health, Environmental and Occupational Health ,Stakeholder ,clinical trial ,Readability ,Clinical trial ,Original Research Paper ,Layperson ,Stakeholder Involvement ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Comprehension ,Original Research Papers ,Research Collaboration - Abstract
Background: Stakeholder involvement includes not just patients and public, but also those delivering treatment e.g. clinicians and students. Each stakeholder brings unique experiences to the process. The aim of this stakeholder exercise was to explore readability and understanding of the trial material for the future trial to be conducted by the authors: Biomechanical Effects of Manual Therapy – A Feasibility Study.\ud \ud Design: Volunteers from identified stakeholder groups were provided with trial material which included the information sheet, consent form, questionnaires and home management booklet. They provided feedback on content (readability, understanding) and style (font, layout). An additional document was provided with genres of pictures to choose the most appropriate style to be used in the booklet.\ud Readability formulas were used to calculate reading age before and after feedback to objectively measure ease of reading.\ud \ud Results: The public group provided a layperson’s perspective to clarify the information sheet for patients, whereas practitioner and intern groups indicated where information could be clarified. The reading age of all documentation decreased following feedback; however templated sections of the documentation did not. The majority (87%) of volunteers chose coloured classic cartoons for the booklet.\ud \ud Conclusion: This process highlighted the importance of involving different stakeholder groups in the development of research materials as each group made a unique contribution. Readability and understanding of the trial material were improved, feeding back into the consent process contributing towards fully informed consent.\ud \ud Patient or Public Contribution: Public helped develop materials for a future trial but not with manuscript preparation.
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- 2021
44. Talking about breast symmetry in the breast cancer clinic: What can we learn from an examination of clinical interaction?
- Author
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Sarah Collins, Stephanie Mace, and Susan A. Speer
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medicine.medical_specialty ,Medicine (General) ,conversation analysis ,media_common.quotation_subject ,Breast Neoplasms ,Ambulatory Care Facilities ,Breast asymmetry ,03 medical and health sciences ,0302 clinical medicine ,Breast cancer ,breast cancer ,R5-920 ,psychosexual health ,medicine ,Humans ,Quality (business) ,030212 general & internal medicine ,Referral and Consultation ,media_common ,Symmetrical breasts ,Physician-Patient Relations ,business.industry ,Communication ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,breast asymmetry ,medical interaction ,medicine.disease ,Original Research Paper ,Clinical communication ,Conversation analysis ,Family medicine ,Normative ,Female ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Breast reconstruction ,business ,Original Research Papers - Abstract
Background Breast asymmetry is a common post‐operative outcome for women with breast cancer. Quality of cosmetic result is viewed clinically as a critical endpoint of surgery. However, research suggests that aesthetic standards governing breast reconstruction can be unrealistic and may problematically enforce feminine appearance norms. The aim of reconstructive procedures is to help women live well with and beyond breast cancer. Therefore, understanding how patients and clinicians talk about surgical outcomes is important. However, we lack evidence about such discussions. Objective To examine clinical communication about breast symmetry in real‐time consultations in a breast cancer clinic. Design Seventy‐three consultations between 16 clinicians and 47 patients were video‐recorded, transcribed and analysed using conversation analysis. Results In most cases, patients do considerable interactional work to persuade clinicians of the validity of their concerns regarding breast asymmetry, and clinicians legitimize these concerns, aligning with patients. In a significant minority of cases, patients appear more accepting of their treatment outcome, but clinicians prioritize symmetry or treat symmetry with the presence of breast tissue as normative, generating misalignment between clinician and patient. Conclusion Current clinical communication guidelines and practices may inadvertently reinforce culturally normative assumptions regarding the desirability of full, symmetrical breasts that are not held by all women. Clinicians and medical educators may benefit from detailed engagement with recordings of clinical communication like those analysed here, to reflect on which communicative practices may work best to attend to a patient's individual stance on breast symmetry, and optimize doctor‐patient alignment.
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- 2021
45. Public perspectives on acquired brain injury rehabilitation and components of care: A Citizens’ Jury
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Coralie English, Anne E Holland, Nerida Hyett, Sophie Hill, Julie Ratcliffe, Libby Callaway, Peter Bragge, Megan Coulter, Kate Laver, Carolyn A. Unsworth, and Natasha A. Lannin
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Adult ,Medicine (General) ,Service delivery framework ,media_common.quotation_subject ,medicine.medical_treatment ,Participatory action research ,Citizens' jury ,Context (language use) ,decision making ,consumer participation ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Jury ,Nursing ,medicine ,Humans ,030212 general & internal medicine ,Acquired brain injury ,Qualitative Research ,Health policy ,Uncategorized ,media_common ,Rehabilitation ,030503 health policy & services ,traumatic brain injury ,Australia ,Public Health, Environmental and Occupational Health ,health policy ,medicine.disease ,Original Research Paper ,Research Design ,Brain Injuries ,deliberative methods ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers - Abstract
© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd Background: Brain injury rehabilitation is an expensive and long-term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked ‘What considerations are important to include in a model of care of brain injury rehabilitation?’. Methods: Qualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross-examined by jurors over two days. Results: Key themes related to the need for a model of rehabilitation to: be consumer-focused and supporting the retention of hope; be long-term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made. Conclusion: Instigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer-focused services that prepare individuals and their carers for the long term. Patient and public contribution: As jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.
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- 2021
46. The experience of financial burden for people with multimorbidity: A systematic review of qualitative research
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James Larkin, Susan M Smith, Patricia Harrington, Louise Foley, and Barbara Clyne
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Adult ,Medicine (General) ,multimorbidity ,Health Personnel ,financial burden ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,systematic review ,Health care ,medicine ,health care costs ,Humans ,030212 general & internal medicine ,Finance ,Government ,non‐communicable disease ,Data collection ,business.industry ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,evidence synthesis ,Grey literature ,Non-communicable disease ,medicine.disease ,Original Research Paper ,Critical appraisal ,Data extraction ,Independent Living ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,Original Research Papers ,chronic disease ,qualitative research ,Qualitative research - Abstract
Background Multimorbidity prevalence is increasing globally. People with multimorbidity have higher health care costs, which can create a financial burden. Objective To synthesize qualitative research exploring experience of financial burden for people with multimorbidity. Search strategy Six databases were searched in May 2019. A grey literature search and backward and forward citation checking were also conducted. Inclusion criteria Studies were included if they used a qualitative design, conducted primary data collection, included references to financial burden and had at least one community-dwelling adult participant with two or more chronic conditions. Data extraction and synthesis Screening and critical appraisal were conducted by two reviewers independently. One reviewer extracted data from the results section; this was checked by a second reviewer. GRADE-CERQual was used to summarize the certainty of the evidence. Data were analysed using thematic synthesis. Main results Forty-six studies from six continents were included. Four themes were generated: the high costs people with multimorbidity experience, the coping strategies they use to manage these costs, and the negative effect of both these on their well-being. Health insurance and government supports determine the manageability and level of costs experienced. Discussion Financial burden has a negative effect on people with multimorbidity. Continuity of care and an awareness of the impact of financial burden of multimorbidity amongst policymakers and health care providers may partially address the issue. Patient or public contribution Results were presented to a panel of people with multimorbidity to check whether the language and themes 'resonated' with their experiences.
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- 2021
47. More ‘milk’ than ‘psychology or tablets’: Mental health professionals’ perspectives on the value of peer support workers
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Laetitia Zeeman and Timothy Moore
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Mental Health Services ,psychosocial ,Subjectivity ,Medicine (General) ,mental health professionals ,Discourse analysis ,education ,peer support ,psychology ,Peer support ,Peer Group ,State Medicine ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,subjectivity ,Humans ,Experiential knowledge ,030212 general & internal medicine ,Objectivity (science) ,discourse analysis ,Medical education ,Mental Disorders ,030503 health policy & services ,user involvement ,Public Health, Environmental and Occupational Health ,Public involvement ,Mental health ,experiential knowledge ,Original Research Paper ,lived experience ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Original Research Papers ,Psychosocial ,mental health - Abstract
Background Though growing numbers of peer support workers are employed in the UK National Health Service (NHS), conflicts persist between core values of peer support and values which exert power within these services. Objectives To explore what NHS mental health professionals value about the peer support worker role. Design Five professionals from different professions and mental health settings were interviewed twice. The first interviews explored their experiences of working with peers. Transcripts were analysed using discourse analysis and psychosocial theory. Second interviews allowed participants to respond to the analysis and influence subsequent analysis. Results Mental health professionals valued peers for the deeply empathic, relational approach they brought, based in their subjective experience. Peer work was also valued for the affect‐focused quality of this work, and the challenge peers pose to existing values in mental health services. The values of peer support troubled dominant ways of working based in forms of knowledge that favour objectivity and hence encountered challenges. Conclusions Peers fulfil the role of amplifying the status of diverse forms of knowledge, values and related ways of working that have become marginalized in NHS mental health services. It is important that peers are not seen as an isolated solution to the marginalization of these forms of knowledge and values, but that their way of working becomes reflected in other roles whilst evoking change throughout these services. Patient or Public Contribution Patient and Public Involvement groups were consulted both in the design and analysis stages of the study.
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- 2021
48. How different health literacy dimensions influences health and well‐being among men and women: The mediating role of health behaviours
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Joanne W.Y. Chung, Fan Zhang, and Peggy Pui-Lai Or
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Gerontology ,Adult ,Male ,Medicine (General) ,health literacy dimensions ,physical condition ,Health Behavior ,Health literacy ,Health outcomes ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,health behaviour ,Surveys and Questionnaires ,Humans ,030212 general & internal medicine ,Path analysis (statistics) ,Life Style ,older adults ,Aged ,030503 health policy & services ,Public Health, Environmental and Occupational Health ,Health behaviour ,Physical health ,Mean age ,Middle Aged ,Health Literacy ,Original Research Paper ,Cross-Sectional Studies ,well‐being ,Well-being ,Female ,Health information ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,Psychology ,Corrigendum ,Original Research Papers - Abstract
Background Health literacy, the ability to access, understand, evaluate and apply health information, was found to contribute to positive health outcomes, possibly via promoting healthy behaviours. However, the specific pathways linking different health literacy skills to health and well-being have remained unclear. Methods A cross-sectional survey with structural questionnaires was administered among 2236 adults in Hong Kong (mean age = 46.10 ± 19.05). Health literacy was measured by HLS-Asian-47. Participants' physical conditions and subjective well-being were predicted by health literacy and health behaviours with structural modelling path analysis. Results Health literacy in finding and understanding information showed a direct effect on enhancing physical health, while applying information capacity had an indirect positive effect via promoting health behaviours, which was moderated by sex. Only among women, this indirect effect predicting fewer physical symptoms and better well-being was significant. Conclusions Different health literacy dimensions showed distinct direct and indirect pathways in influencing health for men and women. Based on the findings, skill trainings should be developed to enhance both gender's abilities of finding and understanding health information, while the ability of applying health information should also be improved for modifying lifestyle and promoting health, particularly for women. Patient or public contribution Two thousand and two hundred thirty-six adults from different districts of Hong Kong participated in the study, and responded to questions on health literacy, behaviours and health status.
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- 2021
49. ‘It reshaped how I will do research’: A qualitative exploration of team members’ experiences with youth and family engagement in a randomized controlled trial
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Joanna Henderson, Natasha Y Sheikhan, Kristin Cleverley, Lynn Courey, Karleigh Darnay, Peter Szatmari, Lisa D. Hawke, and Amy Cheung
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Mental Health Services ,caregivers ,Medicine (General) ,family engagement ,Youth engagement ,Qualitative property ,family relations ,youth engagement ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Humans ,Family ,030212 general & internal medicine ,Medical education ,business.industry ,030503 health policy & services ,Service design ,Public Health, Environmental and Occupational Health ,Focus Groups ,Mental health ,Project team ,Focus group ,Original Research Paper ,adolescent ,Public aspects of medicine ,RA1-1270 ,0305 other medical science ,business ,Psychology ,Inclusion (education) ,Original Research Papers ,Delivery of Health Care ,mental health ,qualitative research ,Qualitative research - Abstract
Background Engaging youth and family members as active partners in research and service design offers great promise in improving projects. In youth mental health, recent research has highlighted the value of youth and family engagement. However, research on the experience and impacts of engagement is sparse. Objective This study explores the project team's experience of youth and family engagement in the design and development of the YouthCan IMPACT randomized controlled trial and clinical service pathway design. Design Qualitative data collected using semi-structured interviews and a focus group as part of the YouthCan IMPACT clinical trial were analysed to understand the impacts of engagement. Twenty-eight team members were interviewed, including youth and family members. A qualitative content analysis was conducted, with a member checking process. Results Team members reported facilitators, barriers and impacts of youth and family engagement. Facilitators included a safe environment and strong procedures conducive to inclusion in co-design. Barriers included logistical, structural and institutional constraints. Overall, team members found youth and family engagement to be valuable and to positively impact the research and service design process. Discussion and conclusions Youth and family engagement played a critical role in research and clinical service pathway design. The team found that their involvement improved the quality of the research and service pathway through sustained and multifaceted engagement. Facilitators and barriers to engagement may serve to guide future engagement initiatives. Future research should evaluate the long-term impact of early engagement and further focus on family engagement. Patient/public contribution Youth and family members were engaged in the data analysis and interpretation process.
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- 2021
50. Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part II: A qualitative analysis
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Natasha Y. Sheikhan, Karen Wang, Tali Boritz, Lisa D. Hawke, Shelley McMain, and Joanna Henderson
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End of DORIGINAL RESEARCH PAPER ,caregivers ,Medicine (General) ,4. Education ,Emotions ,Public Health, Environmental and Occupational Health ,family relations ,030227 psychiatry ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,adolescent ,Humans ,030212 general & internal medicine ,Public aspects of medicine ,RA1-1270 ,Original Research Papers ,mental health ,qualitative research ,peer group - Abstract
Background The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.
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- 2021
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