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Background: For adults with inflammatory bowel disease (IBD), they experience many challenges in dietary decision‐making. Thus, this study examined the perspective and experiences of adults with IBD in dietary decision‐making. Objective: This study aimed to explore the perception and consideration of people with IBD in their daily dietary decisions through monitoring, interpretation and action during the decision‐making process. Design: A qualitative study of individuals affected by IBD was conducted through semistructured interviews. Results: Twenty patients were recruited from four tertiary hospitals in Nanjing, China, and each participant completed a semistructured interview. The majority of participants reported on the process and experience of dietary decision‐making. Key themes were categorised into three stages: (1) assessing needs, preferences and food cues (monitor); (2) moving from experience to expertise (interpret) and (3) balancing expectations amidst limitations (act). The majority of participants reported that their decisions were shaped by assessing current disease status and food cues. Those interviewed with IBD were willing to make tradeoffs for bowel stability, but their decisions were also influenced by past dietary experiences and traditional Chinese beliefs. The lack of awareness of dietary guidelines was a significant barrier to healthy eating decisions. Positive or negative feelings accompanied dietary decisions. Conclusion: Although most people with IBD change their diet after diagnosis, the changes made are often inconsistent with existing dietary recommendations. Several factors can influence the dietary decision‐making process. This study will help assess the experiences of people with IBD in dietary decision‐making to encourage the formation of targeted dietary health and well‐being interventions. Knowledge of nutrition and diet should be provided in education and training programmes for IBD management. Patient or Public Contribution: The first three authors of this paper were the lead researchers in this study's design. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process was co‐lead and directed by other patient participants and consultants. The results of this paper were directly obtained from patient participants. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [ABSTRACT FROM AUTHOR]

Background: Globally, it is estimated that one in three adults live with two or more long‐term conditions (multiple long‐term conditions, MLTCs), that require self‐management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient‐healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self‐managing MLTCs, amongst people who experience socioeconomic deprivation. Methods: Semistructured one‐to‐one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. Findings: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self‐management, including social isolation, area‐based and economic exclusion, and health‐related stigma and (4) adapting self‐management strategies, including cost‐effective, and culturally/lifestyle appropriate strategies. Conclusions: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self‐management of MLTCs are of great importance. Patient or Public Contribution: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

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]

Introduction: A range of nonpharmaceutical public health interventions has been introduced in many countries following the rapid spread of Covid‐19 since 2020, including recommendations or mandates for the use of face masks or coverings in the community. While the effectiveness of face masks in reducing Covid‐19 transmission has been extensively discussed, scant attention has been paid to the lived experience of those wearing face masks. Method: Drawing on 40 narrative interviews with a purposive sample of people in the United Kingdom, with a particular focus on marginalised and minoritized groups, our paper explores experiences of face mask use during the pandemic. Results: We find that face masks have a range of societal, health and safety impacts, and prompted positive and negative emotional responses for users. We map our findings onto Lorenc and Oliver's framework for intervention risks. We suggest that qualitative data offer particular insights into the experiences of public health interventions, allowing the potential downsides and risks of interventions to be more fully considered and informing public health policies that might avoid inadvertent harm, particularly towards marginalised groups. Patient or Public Contribution: The study primarily involved members of the public in the conduct of the research, namely through participation in interviews (email and telephone). The conception for the study involved extensive discussions on social media with a range of people, and we received input and ideas from presentations we delivered on the preliminary analysis. [ABSTRACT FROM AUTHOR]

Background: People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient‐provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. Methods: This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community‐based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co‐creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. Results: Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. Conclusion: PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. Patient or Public Contribution: Members of the public with literacy needs actively participated in the co‐creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research. [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]

Background: Patient and Public involvement (PPI) has rapidly evolved into a key component in shaping the delivery of health services. However, little is known about what it is like to participate in involvement procedures that include representatives of multiple groups and in the context of developing new interventions for Child and Adolescent Mental Health Services (CAMHS). Objective: This study explored participants' experiences of PPI, following attending a 'consensus conference', during which their views were sought in relation to the development of a proposed staff‐based intervention and key questions about its design and implementation. Design: Qualitative, semi‐structured interview study. Setting and Participants: Six participants, including service users and various frontline clinical staff team members, who had experience of CAMHS were present at the consensus conference and then asked about their experiences of being involved via semi‐structured interviews. The data were analysed using Interpretative Phenomenological Analysis (IPA). Young people, carers and frontline staff have been involved in the design and implementation throughout the broader programme of work of which this study forms part, although these groups were not directly involved in the design and implementation of this paper. Results: Three key narratives were present: (a) Previous Experiences Driving Expectations, (b) 'We are all in the same boat' and (c) The Realization of Multiple Identities. The results suggest that PPI involvement is a complex process that may be driven by positive/negative expectations, but that individuals value learning about others and recognizing different perspectives while reaching shared goals in improving services. Discussion and Conclusion: This study demonstrates the complexity of experience that service users and clinical staff face when engaging in involvement activities in CAMHS. The findings demonstrate the value in engaging multiple stakeholder groups while also highlighting the importance of proper consideration of the procedures involved and facilitators of engagement. [ABSTRACT FROM AUTHOR]

Background: Trans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers' experiences of contemporary health‐care services when seeking to transition medically in later life. Objectives: Qualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life. Design: Trans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach. Setting and participants: This paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life. Results: Findings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life. Discussion and conclusions: Messages from this study speak to the importance of improving professionals' knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity. [ABSTRACT FROM AUTHOR]