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Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [ABSTRACT FROM AUTHOR]

Background: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under‐supported in clinical settings and research. Objectives: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient‐led research process. Methods: Trained patient researchers conducted this study by engaging peers via semi‐structured interviews and focus groups in a three‐step co‐design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). Results: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. Conclusion: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. Patient or Public Contribution: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer‐to‐peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co‐lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants. [ABSTRACT FROM AUTHOR]

Background: Shared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia. Methods: We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. Results: Five main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. Conclusion: This study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study. Patient or Public Contribution: Patients were involved in the study design, recruitment and analysis. [ABSTRACT FROM AUTHOR]

Introduction: British South Asians have a higher prevalence of overweight and obesity than the wider population. Bradford (UK), with its high Pakistani presence and levels of economic deprivation, has exceptionally high instances, especially in deprived areas where many Pakistanis reside. British Pakistani women in Bradford are more likely to be overweight and obese. There is uncertainty on how these women can be aided to manage their weight. Therefore, the objective of this study was to explore the obesity concerns of Pakistani women living in deprived inner‐city areas of Bradford. Methods: Three focus groups interviews were carried out with 23 Pakistani women living in deprived areas of Bradford. Data were analysed thematically. Results: This exploratory study identified a wide range of concerns that women had around managing their weight. Participants disclosed distrust in information given around medication, conflicting dietary information and reported low levels of trust in women‐only organized physical activities. Cultural barriers were identified, which included the gender role of the woman, the lack of culturally appropriate dietary advice, cultural misunderstandings of what constitutes a healthy diet and healthy weight, the lack of culturally suitable exercise facilities and conforming to family and community expectations. Other concerns were language barriers around a lack of understanding, the inability to read Urdu and reliance on others to translate information. Conclusion: These findings have implications for researchers, local authorities, policy makers and others with an interest in reducing the rates of obesity in this population. Recommendations include training health practitioners to be culturally aware of the diet and eating practices of this community, exploring different ways to support socially isolated women to be more physically active at home, addressing physical activity and diet misconceptions and designing obesity management information materials appropriate for a range of literacy levels. Patient or Public Contribution: Public contributors were involved in the development of the interview guide and design of the research. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Interview transcripts were member checked by participants, and participants assisted with data analysis. [ABSTRACT FROM AUTHOR]

Introduction: No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods: This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results: Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions: Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution: A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

Introduction: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters. Methods: This is a qualitative descriptive study utilizing focus groups and one‐to‐one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers. Findings: In our analysis, we identified three key themes (safety strategies) from patients' and caregivers' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information. Conclusions: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice. Patient or Public Contributions: An advisory group guided the research and was co‐chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day‐to‐day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives. [ABSTRACT FROM AUTHOR]

Introduction: The quality of care and patient satisfaction is closely linked with dignity, which is a crucial component of therapy and care. However, there is very little study on dignity in the context of mental health care. Planning for ongoing patient care might benefit from an understanding of the notion of dignity by exploring the experiences of patients, caregivers and companions of patients who have a history of hospitalization in mental health institutions. To retain patients' dignity while they were being treated in mental wards, this study sought to understand the experiences of patients, caregivers and companions of patients. Materials and Methods: This investigation was qualitative. Semistructured interviews and focus groups were utilized to collect the data. The purposeful sampling method was employed for participant recruitment, which continued until data saturation. Two focus group discussions and 27 interviews were conducted. Participants included 8 patients, 2 patients' family members (companions), 3 psychologists, 4 nurses and 11 psychiatrists. Two focus group discussions were held with seven family members or companions of patients. Thematic analysis was used for data analysis. Results: The primary theme that emerged was the infringement of patients' dignity, through negative guardianship, dehumanization and violations of their rights. Subthemes included dehumanization, worthlessness and namelessness, patient rights violations and stripping patients of authority. Conclusion: Our results suggest that, regardless of the severity of the illness, the nature of psychiatric illness significantly compromises patients' dignity. Mental health practitioners, due to their sense of guardianship, may unintentionally treat patients with mental health disorders, thus compromising the patient's dignity. Patient or Public Contribution: The research team's experiences as a psychiatrist, doctor and nurse informed the study's objectives. Nurses and psychiatrists who work in the healthcare industry designed and conducted the study. The primary authors, who are healthcare providers, collected and analysed the required data. Furthermore, the entire study team contributed to the writing of the manuscript. Study participants were involved in the data collection and analysis. [ABSTRACT FROM AUTHOR]

Introduction: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can‐SOLVE CKD) is a pan‐Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach. Methods: To capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach. Results: We included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use). Conclusions: Our findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient‐oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network. Patient or Public Contribution: This project was conceived in collaboration with a Can‐SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co‐designed the study′s protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings. [ABSTRACT FROM AUTHOR]

Introduction: As children with long‐term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self‐management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self‐management responsibility and parents to relinquish control. Methods: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13–17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. Findings: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self‐management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child‐ or family‐centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. Conclusion: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child‐ and family‐centred care, and how HCPs can adopt personalized, strengths‐based approaches to help ensure the support that families receive is tailored to their individual needs. Patient or Public Contribution: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery. [ABSTRACT FROM AUTHOR]

Background: There is a need for effective health service solutions to provide greater structure and support for implementing evidence‐based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. Objectives: To determine patients' perceived needs and barriers to best‐practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the 'idea generation' for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. Design: We conducted a combination of focus groups and in‐depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. Setting and Participants: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non‐English audio recordings were translated and transcribed by bilingual researchers. Results: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. Discussion and Conclusion: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self‐management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. Patient or Public Contribution: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. [ABSTRACT FROM AUTHOR]

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 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health‐care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs. Conclusion: This research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On‐going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches. Patient or public contribution: Three patient research partners with hospital PE experience informed study objectives and interview questions. [ABSTRACT FROM AUTHOR]

Background: Opportunities for cancer survivors' employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective: This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method: Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results: Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions: Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution: This study included cancer survivors and HCPs as investigators, authors and participants. [ABSTRACT FROM AUTHOR]

Background: Gout treatment is not optimized globally, often due to therapeutic inertia by physicians or poor adherence to urate‐lowering medications by patients. A patient decision aid (PDA) to facilitate shared decision making (SDM) in gout treatment may overcome these physician‐patient barriers. Objective: The study explored the views of physicians and patients on a novel locally designed gout treatment PDA prototype. Design: Qualitative descriptive design was used to gather data from in‐depth‐interviews (IDI) and focus group discussions (FGD). Data analysis was via thematic analysis. Emergent themes shaped a revised version of the PDA. Setting and participants: Adult Asian patients with recent acute gout exacerbations and local Primary Care Physicians (PCP) in Singapore were purposefully chosen. 15 patients with gout and 11 PCPs participated across three IDIs and six FGDs, with the investigators exploring their views of a prototype gout treatment PDA. Results: Patients and physicians generally concurred with the content and design of the PDA prototype. However, while patients preferred fewer treatment details, the PCPs desired more information. Patients preferred the display of statistics, while PCPs felt that numbers were not relevant to patients. The latter were hesitant to include treatment options that were unavailable in primary care. Both stakeholders indicated that they would use the PDA during a consultation. PCPs would need further training in SDM, given a lack of understanding of it. Conclusion and patient contribution: Patients will be the prime users of the PDA. While their views differed partially from the physicians, both have jointly developed the novel gout treatment PDA. [ABSTRACT FROM AUTHOR]

Background: There is some evidence that health and social care professional (HSCP) teams contribute to enhanced patient and process outcomes in increasingly crowded emergency departments (EDs), but the views of service users and providers on this model of care need investigation to optimize implementation. Objective: This qualitative study investigated the perspectives of key ED stakeholders about HSCP teams working in the ED. Methods: Using a participatory design, we conducted World Café focus groups and individual interviews in two Irish hospital sites with 65 participants (purposive sampling) including ED patients and carers/relatives, ED doctors and nurses, HSCPs and pre‐hospital staff. Data were thematically analysed using NVivo software. Results: Participants reported that ED‐based HSCP teams could improve quality and integration of care and staff experience (Theme 1) and would be appropriate for older adults with complex needs and non‐urgent complaints (Theme 2). Concerns were raised about operational and relational barriers to implementation (Theme 3), and changes in processes and culture were considered necessary for HSCPs to work successfully in the ED (Theme 4). In contrast to service providers, service users' concerns centred on the importance of positive communication and relations (Theme 5). Conclusions: Our study indicates potential acceptability of HSCP teams working in the ED, especially to care for older adults; however, operational and relational aspects, particularly developing interdisciplinary and integrated care, need addressing to ensure successful implementation. Differences in priorities between service users and providers (relational vs operational) highlighted the usefulness of gathering views from multiple stakeholders to understand ED processes. [ABSTRACT FROM AUTHOR]

Background: The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception. Aim: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities. Method: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. Results: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants' reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants' ideas on future research; and (e) Seeking to share understanding: participants' views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of "putting together a jigsaw" of evidence through perseverance and collaboration. Conclusion: This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients' voices to a call for a more collaborative research culture. [ABSTRACT FROM AUTHOR]

Abstract: Background: Self‐management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person‐centred approaches into health care. Objective: To explore what people with chronic illness describe as their strengths relevant to their health and well‐being. Setting and Participants: Thirty‐nine participants (11 men) from 4 outpatient self‐management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. Results: A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self‐management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health‐care providers. Self‐management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. Discussion and Conclusion: The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person‐centred approaches into health care. [ABSTRACT FROM AUTHOR]

Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. Design Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. Settings and participants Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life. [ABSTRACT FROM AUTHOR]

Background: Malaysia is an Asian country with population of diverse culture and health perceptions. Patient decision aid (PDA) is a new tool in Malaysia. Patients' and health‐care professionals' (HCPs) expectation of a PDA is unknown. Aim: We aimed to explore patients' and health‐care professionals'(HCPs) views on the information needed in a patient decision aid (PDA) on insulin initiation developed for patients with type 2 diabetes mellitus (T2DM). Design: We used a qualitative design and thematic approach. Setting: Three main primary health‐care settings in Malaysia: public university‐based primary care clinics, public health‐care clinics and private general practices. Method: We conducted focus groups and one‐to‐one interviews with a purposive sample of health professionals and patients with type 2 diabetes. Results: We interviewed 18 patients and 13 HCPs. Patients viewed the content of the PDA as simple and clear. However, HCPs felt the PDA might be difficult for patients with low literacy to understand. HCPs thought the PDA was too lengthy. Nevertheless, patients would prefer more information. HCPs tended to focus on benefits of insulin, while patients wanted to know the impact of insulin on their quality of life and practical issues regarding insulin and its side‐effects. Patients preferred numbers to weigh the risks and benefits of treatment options. HCPs' views that presenting numbers in a PDA would be too complex for patients to understand. Conclusion: It is important to consider including issues related to psycho‐social impact of treatment to patients when developing a patient decision aid. [ABSTRACT FROM AUTHOR]

Background: Patient participation in medication management during hospitalization is thought to reduce medication errors and, following discharge, improve adherence and therapeutic use of medications. There is, however, limited understanding of how patients participate in their medication management while hospitalized. Objective: To explore patient participation in the context of medication management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease. Design: Single institution, case study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including pre‐admission and pre‐discharge patient interviews (n = 98), naturalistic observations (n = 48) and focus group interviews (n = 2). Results: All patients had changes made to their pre‐operative cardiovascular medications as a consequence of surgery. More patients were able to list and state the purpose and side‐effects of their cardiovascular medications at pre‐admission than prior to discharge from hospital. There was very little evidence that nurses used opportunities such as medication administration times to engage patients in medication management during hospital admission. Discussion and Conclusions: Failure to engage patients in medication management and provide opportunities for patients to learn about changes to their medications has implications for the quality and safety of care patients receive in hospital and when managing their medications once discharged. To increase the opportunity for patients to participate in medication management, a fundamental shift in the way nurses currently provide care is required. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to explore the patients' and health professionals' experiences and perceptions on the management strategies for insomia in primary care. The researchers detail the study design, participants and setting, data collection procedure and outcomes. The study provides a better understanding on the approaches and difficulties in the therapeutic options and management of insomnia in primary care setting.

Background: Although much health information‐seeking behaviour (HISB) research has been reported in patients with good literacy skills, little is known about HISB in patients with limited literacy skills served by under‐resourced health‐care systems. Objective: To investigate medicine information‐seeking behaviour and information needs in patients with limited literacy. Methods: Using a question guide, four focus group discussions (FGDs) were conducted to explore themes related to information needs, information‐seeking practices and awareness of and ability to utilize information sources. Twenty‐two isiXhosa‐speaking long‐term patients with limited formal education were recruited from a primary health‐care clinic in South Africa. Discussions were audio‐recorded and transcribed verbatim. NVivo® was used for initial coding of transcripts. Codes were analysed, and potential themes and subthemes in the entire data set were identified and refined. Findings: The results of this study reflect a passive, disempowered patient. Poor awareness of information sources, lack of health‐related knowledge and stigma contributed to a lack of information‐seeking practice, thus potentially adversely influencing patient–provider interactions. Patients neither asked questions nor were encouraged to ask questions. All expressed an unmet need for information and a desire for receiving the illustrated written medicines‐related information displayed in the FGDs. The main sources of information were health‐care professionals, followed by family and friends. Conclusion: The significant level of patient disempowerment and passivity reported amongst patients underpinned their inability to actively seek information. Neither sources of information nor types of appropriate medicines information could be identified. Unmet information needs and a desire for information were reported. [ABSTRACT FROM AUTHOR]

The article presents the study that explores on the views and expectations of patients about osteopathic care in the private sector care in Great Britain. The topics discussed include ways of how their views impact their health care outcomes, the attributes of osteopathic medicine, and the qualitative method used in articulating patients' expectations on private osteopathic practice.

Purpose This study aimed to explore peoples' needs and expectations of written medicines information (WMI), and to determine the barriers and facilitators experienced or perceived in the context of WMI provision and use. Methods We conducted eight focus groups with 62 participants over 6 weeks in late 2008 in New South Wales, Australia. Using a semi-structured topic schedule and examples of WMI from Australia and other English-speaking countries as a guide, we explored themes relevant to WMI, including participant experiences, attitudes, beliefs and expectations. Findings Our findings suggest less than half had previously received WMI, with many unaware of its availability. Many, but not all, wanted WMI to supplement the spoken information they received but not to replace it, and it was predominantly used to facilitate informed choice, ascertain medicine suitability and review instructions. The current leaflets were considered technical and long, and a summary leaflet in addition to comprehensive information was favoured. Accurate side-effect information was the most important element that participants desired. The most common barriers to effective WMI use were time constraints and patient confidence, with participants citing empowerment, time and health-care professional (HCP)-patient relationships as important facilitators. Conclusion The findings provide insight and understanding of peoples needs and expectations, and clarify issues associated with use and non-use of WMI. Challenges include addressing the barriers, especially of time and HCP attitudes to drive changes to workplace practices, and learning from the facilitating factors to encourage awareness and accessibility to WMI as a tool to empower patients. [ABSTRACT FROM AUTHOR]

Background The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres. Objective To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components. Design We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists. Results Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS. Conclusions The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use. [ABSTRACT FROM AUTHOR]