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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: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [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]

Infant and young child feeding (IYCF) practices are influenced by many context‐ specific factors related to local food systems as well as social and cultural practices. Understanding these local contextual perspectives is essential for designing effective programs and policies. This paper uses focused ethnographic study methods to examine challenges experienced by mothers related to IYCF in two counties in Kenya, a country with considerable heterogeneity in agriculture, food systems, and cultures. A two‐phase qualitative study was undertaken in each of Kilifi County and West Pokot County, entailing interviews and rating activities with mothers, health workers, and vendors. Interviews were audio‐recorded, transcribed, translated into English, coded, and analysed by topic. Results show low levels of dietary diversity in both counties; in West Pokot, the level of adequate meal frequency is also low. Core foods in young child diets included maize porridge and family foods such as ugali (stiff maize porridge), vegetables, beans, fish, and plantains. Food safety, acceptability, and acquisition ease were the main drivers of food choice. Mothers generally felt that all core foods fed to young children are healthy and safe, but there was more variability regarding child acceptance, acquisition ease, cost, and convenience. Common barriers to feeding nutrient‐dense foods to children included child illness, economic constraints, and limited knowledge of modification strategies, skills, or tools to make the foods suitable for young children. Potential actions to address these barriers include sharing information on child‐appropriate recipes; raising awareness on local, affordable nutrient‐dense foods; and improving WASH practices to reduce illness frequency. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Background: Involving patients is a key premise of national and international policies on patient safety, which requires understanding how patients or carers want to be involved and developing resources to support this. This paper examines patients' and carers' views of being involved in patient safety in primary care and their views of potentially using a co‐designed patient safety guide for primary care (PSG‐PC) to foster both involvement and their safety. Methods: A qualitative study using semistructured face‐to‐face interviews with 18 patients and/or carers in primary care. Interviews were transcribed and analysis was conducted using an inductive thematic approach. Results: Overall participants expressed enthusiasm for the PSG‐PC as a tool to support patients and carers to be involved in patient safety in primary care. However, for some participants being involved in patient safety was seen as taking on the role of General Practitioner and had the potential to add an additional workload for patients. Participants' willingness or ability to be involved in patient safety was influenced by a range of factors including an invisible, often underacknowledged role of everyday safety for patients' interactions with primary care; the levels of involvement that patients wanted in their care and safety and the work of embedding the PSG‐PC for patients into their routine interactions with primary care. Participants identified components of the PSG‐PC that would be useful to them, in particular, if they had a responsibility for caring for a family member if they had more complex care or long‐term conditions. Conclusion: Involving patients and carers in patient safety needs a tailored and personalized approach that enables patients and carers to use resources like the PSG‐PC routinely and helps challenge assumptions about their willingness and ability to be involved in patient safety. Doing so would raise awareness of opportunities to be involved in safety in line with personal preference. Patient or Public Contribution: Patient and public involvement were central to the research study. This included working in partnership to develop the PSG‐PC with patients and carers and throughout our study including in the design of the study, recruiting participants, interpretation of findings. [ABSTRACT FROM AUTHOR]

Introduction: A person‐centred model of care, developed in the early days of the HIV epidemic when there were no effective treatments for HIV, led to relatively close relationships between carers and people living with HIV (PLWH). Our study examines the experiences of carers using a relational framework, exploring the traumas and challenges involved, coping practices instigated by carers and the emergence of 'relational traumatic growth' opportunities. Methods: Twenty‐two UK healthcare workers and charity volunteers working with PLWH from the early years of the epidemic were recruited. Semistructured interviews were used to elicit participants' own stories of working with PLWH, from their initial involvement to the present time, and their reflections on the personal impact of working in the field of HIV. Data were analysed using a thematic approach employing relational categories. Results: The impact of care was related to the formation of close relationships, identification with PLWH, high numbers of deaths and the difficulties and challenges encountered relationally. Participants described attempts to cope through informal and formal support, as well as endeavours to manage professional boundaries. Various ways of making sense of experiences were described, ranging from denial to abandoning the HIV field, to intense commitment. For some, traumatic experiences lead to validation, a search for personal meaning and managing the sense of loss with an exploration of further ventures, contributing to the achievement of relational traumatic growth. Conclusion: The intensity of relationships in HIV work, developed through the emotional and practical work of caring for PLWH, led healthcare workers and volunteers to experience a range of psychological consequences, both negative (including distress and emotional exhaustion) and also positive (such as acquiring a sense of purpose). Patient or Public Contribution: People living with HIV and those working with them were involved in the initial study conceptualization and design. The second and fourth authors of this paper were professionals working in HIV throughout the pandemic and have led on all aspects of the study. People living with HIV and those working with them additionally guided participant selection by suggesting participants and supporting recruitment. Narrative transcripts were checked and amended (if necessary) by participants. Initial findings were presented at the AIDS impact conference, where PLWH and those working with them attended and feedback on important ideas that helped to prioritize and shape the study findings. [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]

The COVID‐19 pandemic presented numerous challenges to acute malnutrition screening and treatment. To enable continued case identification and service delivery while minimising transmission risks, many organisations and governments implemented adaptations to community‐based management of acute malnutrition (CMAM) programmes for children under 5. These included: Family mid‐upper arm circumference (MUAC); modified admission and discharge criteria; modified dosage of therapeutic foods; and reduced frequency of follow‐up visits. This paper presents qualitative findings from a larger mixed methods study to document practitioners' operational experiences and lessons learned from these adaptations. Findings reflect insights from 37 interviews representing 15 organisations in 17 countries, conducted between July 2020 and January 2021. Overall, interviewees indicated that adaptations were mostly well‐accepted by staff, caregivers and communities. Family MUAC filled screening gaps linked to COVID‐19 disruptions; however, challenges included long‐term accuracy of caregiver measurements; implementing an intervention that could increase demand for inconsistent services; and limited guidance to monitor programme quality and impact. Modified admission and discharge criteria and modified dosage streamlined logistics and implementation with positive impacts on staff workload and caregiver understanding of the programme. Reduced frequency of visits enabled social distancing by minimising crowding at facilities and lessened caregivers' need to travel. Concerns remained about how adaptations impacted children's identification for and progress through treatment and programme outcomes. Most respondents anticipated reverting to standard protocols once transmission risks were mitigated. Further evidence, including multi‐year programmatic data analysis and rigorous research, is needed in diverse contexts to understand adaptations' impacts, including how to ensure equity and mitigate unintended consequences. Key messages: COVID‐19 CMAM programme adaptations enabled service continuity despite pandemic‐related challenges. Further evidence is needed on long‐term impacts.Family MUAC was well‐accepted and addressed screening gaps from COVID‐19 disruptions. Challenges included sustaining caregiver measurement accuracy; handling inaccurate self‐referrals to encourage health‐seeking behaviours; and limited programme design and monitoring guidance and tools.Modified admission criteria and therapeutic food dosage reduced contact between staff and children and streamlined logistics and implementation. Concerns remained about effects on programme admissions and outcomes.Reduced frequency of follow‐up visits successfully reduced facility crowding and need for caregiver travel. However, infrequent monitoring of childrenmay miss deterioration. [ABSTRACT FROM AUTHOR]

Introduction: Despite digital health tools being popular for supporting self‐management of chronic diseases, little research has been undertaken on stroke. We developed and pilot tested, using a randomized controlled design, a multicomponent digital health programme, known as Inspiring Virtual Enabled Resources following Vascular Events (iVERVE), to improve self‐management after stroke. The 4‐week trial incorporated facilitated person‐centred goal setting, with those in the intervention group receiving electronic messages aligned to their goals, versus limited administrative messages for the control group. In this paper, we describe the participant experience of the various components involved with the iVERVE trial. Methods: Mixed method design: satisfaction surveys (control and intervention) and a focus group interview (purposively selected intervention participants). Experiences relating to goal setting and overall trial satisfaction were obtained from intervention and control participants, with feedback on the electronic message component from intervention participants. Inductive thematic analysis was used for interview data and open‐text responses, and closed questions were summarized descriptively. Triangulation of data allowed participants' perceptions to be explored in depth. Results: Overall, 27/54 trial participants completed the survey (13 intervention: 52%; 14 control: 48%); and 5/8 invited participants in the intervention group attended the focus group. Goal setting: The approach was considered comprehensive, with the involvement of health professionals in the process helpful in developing realistic, meaningful and person‐centred goals. Electronic messages (intervention): Messages were perceived as easy to understand (92%), and the frequency of receipt was considered appropriate (11/13 survey; 4/5 focus group). The content of messages was considered motivational (62%) and assisted participants to achieve their goals (77%). Some participants described the benefits of receiving messages as a 'reminder' to act. Overall trial satisfaction: Messages were acceptable for educating about stroke (77%). Having options for short message services or email to receive messages was considered important. Feedback on the length of the intervention related to specific goals, and benefits of receiving the programme earlier after stroke was expressed. Conclusion: The participant experience has indicated acceptance and utility of iVERVE. Feedback from this evaluation is invaluable to inform refinements to future Phase II and III trials, and wider research in the field. Patient or Public Contribution: Two consumer representatives sourced from the Stroke Foundation (Australia) actively contributed to the design of the iVERVE programme. In this study, participant experiences directly contributed to the further development of the iVERVE intervention and future trial design. [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]

Child undernutrition is responsible for 45% of all under‐five deaths in low‐ and middle‐income countries (LMICs) and numerous morbidities. Although progress has been made, high levels of child undernutrition persist in Zambia. Existing studies have explored primary caretakers' (PCs) explanatory models of child undernutrition in LMICs, without comparison with those of health care providers (HCPs). This paper examines and compares the perceived causes of child undernutrition among PCs and HCPs in Zambia. We conducted a qualitative study, using semistructured one‐to‐one and group interviews, with 38 PCs and 10 HCPs to explore their perceptions of child undernutrition and its perceived causes in Lusaka district, Zambia. Interview data were analysed with thematic analysis. Our findings indicate that PCs and HCPs in Lusaka district have divergent explanatory models of child undernutrition and perceive parental agency differently. In divergently framing how they conceptualise undernutrition and who is able to prevent it, these models underpin different attributions of causality and different opportunities for intervention. PCs highlighted factors such as child food preferences, child health, and household finances. Contrarily, HCPs stressed factors such as 'improper feeding', only highlighting factors such as wider economic conditions when these impacted specifically on health care services. One factor, identified by both groups, was 'inadequate mothering'. To accelerate the reduction of child undernutrition, interventions must address divergences between PCs and HCPs' explanatory models. Additionally, attention needs to be paid to how wider socio‐economic and cultural contexts not only impact childhood undernutrition but shape attributions of causality. [ABSTRACT FROM AUTHOR]