Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration.

INTRODUCTION: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. METHODS: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps. FINDINGS: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. CONCLUSION: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. PATIENT OR PUBLIC CONTRIBUTION: The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.

OBJECTIVES: Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings. DESIGN: Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province. PARTICIPANTS: Thirty-two families (including 38 parents and 13 siblings) of CYSHCN. RESULTS: We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges. CONCLUSIONS: Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.

Self-management interventions for children and young people with sickle cell disease: A systematic review.

BACKGROUND: Increasing numbers of interventions are being developed to support self-management for children and young people (CYP) with sickle cell disease (SCD), but no systematic review has systematically synthesized this evidence regarding their characteristics, effectiveness, acceptability and feasibility for all published intervention types. METHODS: The Joanna Briggs Institute guidelines for mixed-method reviews were followed. A systematic search of eight databases and key journals was conducted from their inception to November 2021. Primary research of self-management interventions targeting CYP with SCD aged 8-24 years and reporting any health/social outcome and acceptability data were included. Design-specific standardized critical appraisal instruments were used. Two independent reviewers screened and appraised the articles. A third reviewer resolved disagreements. RESULTS: Of 1654 articles identified, 38 studies were included. Methodological quality was moderate. Most studies evaluated SCD education, psycho-behavioural, psychosocial and skills training and/or social support interventions. They appear to demonstrate short-term improvements in knowledge, social functioning and medical adherence outcomes. Interventions that were multifaceted in content, combined technological platforms and in-person group-based formats and involved peers, family and care providers were more acceptable and effective. The long-term impact of interventions was limited, including CYP's involvement in the intervention development and implementation. CONCLUSIONS: There is inconclusive evidence for any self-management programme. Nonetheless, support from family, peers and care providers appears to be important for self-management interventions' effectiveness and acceptability. Future research needs to prioritize CYP involvement in both intervention design and delivery, their wider social context and include CYP with SCD from non-Black backgrounds. PATIENT AND PUBLIC CONTRIBUTION: Three young people with SCD recruited acted as the review advisors. They were formally trained in the review process and involved in every aspect of the review: the design, conduct and interpretation of the findings. CYP involvement in the interventions' development and implementation was analysed as part of the review. This systematic review was conducted as part of a wider research project titled: Understanding fatigue experiences of CYP with SCD to guide the co-development of a fatigue self-management intervention. Two of the young advisors involved in the review were also involved in the development of the project funding application.

Supporting the parent-to-child transfer of self-management responsibility for chronic kidney disease: A qualitative study.

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.

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease.

INTRODUCTION: The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process. METHODS: Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13-17 years with CKD, 13 parents and 20 HCPs. FINDINGS: A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self-management or young person-parent shared management. CONCLUSION: Families would benefit from HCP support over a longer timeframe that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people 'doing' self-management. 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.

Qualitative Observational Research in the Intensive Care Setting: A Personal Reflection on Navigating Ethical and Methodological Issues.

The aim of this theoretical paper is to critically reflect on the ethical and methodological issues that arose during a study that observed nurses' care-giving in an intensive care unit setting. The authors critically discuss the methodological and ethical issues as well as the practical realities that were encountered when evaluating a complex intervention using unstructured qualitative observations. We describe the process with negotiating access and entering into the clinical field. Moreover, we reflect on experiences related to methodological issues such as the observer role, how to construct field notes, and how to encounter ethical dilemmas and other problems when being an observer in a closed and protected setting like an intensive care unit. We argue that qualitative observations give an insider perspective when studying the conditions for health and well-being. Our experiences can be transferred to other contexts and guide researchers interested in doing qualitative observational studies.

Patient safety in marginalised groups: a narrative scoping review.

BACKGROUND: Marginalised groups ('populations outside of mainstream society') experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising. METHODS: Scoping review. Systematic searches were performed across six electronic databases in September 2019. The time frame for searches of the respective databases was from the year 2000 until present day. RESULTS: The searches yielded 3346 articles, and 67 articles were included. Patient safety issues were identified for fourteen different marginalised patient groups across all studies, with 69% (n = 46) of the studies focused on four patient groups: ethnic minority groups, frail elderly populations, care home residents and low socio-economic status. Twelve separate patient safety issues were classified. Just over half of the studies focused on three issues represented in the patient safety literature, and in order of frequency were: medication safety, adverse outcomes and near misses. In total, 157 individual contributing or associated factors were identified and mapped to one of seven different factor types from the Framework of Contributory Factors Influencing Clinical Practice within the London Protocol. Patient safety issues were mostly multifactorial in origin including patient factors, health provider factors and health care system factors. CONCLUSIONS: This review highlights that marginalised patient groups are vulnerable to experiencing a variety patient safety issues and points to a number of gaps. The findings indicate the need for further research to understand the intersectional nature of marginalisation and the multi-dimensional nature of patient safety issues, for groups that have been under-researched, including those with mental health problems, communication and cognitive impairments. Such understanding provides a basis for working collaboratively to co-design training, services and/or interventions designed to remove or at the very least minimise these increased risks. TRIAL REGISTRATION: Not applicable for a scoping review.

When technology enters the home - a systematic and integrative review examining the influence of technology on the meaning of home.

AIM: To analyse and synthesise the research that has investigated the experience of home in relation to home mechanical ventilation (HMV). METHOD: Systematic integrative review. Four electronic databases (CINAHL, PubMed, Scopus and ISI Web of Knowledge) were searched between January 2010 and April 2017 as well as reference lists of included studies. Quantitative and qualitative studies meeting the inclusion criteria were critically appraised. Study findings were inductively analysed and synthesised using the integrative approach. RESULTS: Twenty-one studies were included in the review. Two main themes emerged: home and at-homeness and altered interpersonal relationships. The literature suggests that the technology alters the meaning of home through its structural and conceptual reconfiguration. Paradoxically, the space is experienced as both a home and a workplace which creates tensions and ambiguities for HMV users/families and care workers. HMV users and their families attempt to recreate a sense of home and identity while gaining control over space and decision-making. Nevertheless, the home is seen as the preferred place to live and close bonds can develop between the different actors. CONCLUSIONS: The literature suggests that the transformation of the meaning of home by the presence of technology and workers poses challenges that are often under-recognised. Healthcare professionals and personal care assistants need preparation for the complexities of working in the home setting in addition to clinical aspects of caregiving. Home adaptations need to be carefully planned and include design principles that retain 'at-homeness' while enabling the creation of a safe workplace.

How a moderated online discussion forum facilitates support for young people with eating disorders.

INTRODUCTION: Young people with eating disorders are at risk of harm to their social, emotional and physical development and life chances. Although they can be reluctant to seek help, they may access social media for information, advice or support. The relationship between social media and youth well-being is an emotive subject, but not clearly understood. This qualitative study aimed to explore how young people used a youth-orientated, moderated, online, eating disorders discussion forum, run by an eating disorders charity. METHODS: We applied a netnographic approach involving downloading and thematically analysing over 400 messages posted August-November 2012. RESULTS: Data analysis generated five themes: Taking on the role of mentor; the online discussion forum as a safe space; Friendship within the online forum; Flexible help; and Peer support for recovery and relapse prevention. Forum moderation may have influenced the forum culture. DISCUSSION: Our findings are consistent with literature about youth preferences for mental health self-care support. A young person's decision to use this discussion forum can be construed as pro-active self-care. A moderated online discussion forum can make a positive contribution to support for youth with eating disorders, countering negative media perceptions of online groups. CONCLUSION: This study adds to knowledge about how young people access support via social media. Online discussion forums can be safe and acceptable spaces for youth to access help. Further research could provide insights into the impact of forum moderation.

Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared-for person. The data were interpreted in terms of types of 'work' undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring 'work'. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self-management of LTCs in the community must be complemented by recognition of this group as potentially 'hidden carers', who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.

Transferring young people with cystic fibrosis to adult care.

AIM: To explore activities, interactions and behaviours during the first appointment in adult care for young people with cystic fibrosis. METHOD: Observational data were collected at 12 first appointments. Framework analysis was applied to written field notes. FINDINGS: Interaction enablers and interaction barriers were identified in the data. Practitioners endeavoured to be holistic, addressing personal as well as physical factors. This involved broaching individuals' interests, self-disclosure and humour. Various activities were accomplished. The role of parents in the continued management of cystic fibrosis was not raised at first appointments. DISCUSSION: Practitioners require clear objectives for first appointments in adult care to ensure young people adapt to this new healthcare setting. Young people should be prepared for transfer so they can respond to and ask questions, and parents should be assisted to relinquish control of their child's condition. Conclusion A modest set of objectives for the first appointment should be set to enable young people to retain information, while introducing them to a new service.

Developing biographies: the experiences of children, young people and their parents of living with a long-term condition.

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long-term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long-term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.

Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities.

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness 'work' undertaken within peoples' social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples' networks. In networks with 'no partner' other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support.

Liminality and transfer to adult services: a qualitative investigation involving young people with cystic fibrosis.

BACKGROUND: Moving to adult care can be challenging for adolescents with a long-term condition; if not managed well it may result in non-adherence, failure to attend appointments and a decline in health post-transfer. Life expectancy for those with cystic fibrosis has improved considerably in recent decades. This patient group was selected as an exemplar for thinking about the movement of care from paediatric to adult services. OBJECTIVES: To explore young people's experience of transferring. DESIGN: A qualitative descriptive methodology, involving semi-structured interviews. SETTING: One adult cystic fibrosis unit in the United Kingdom. PARTICIPANTS: 19 patients (12=male) who had moved to the study site no more than 12 months prior to data collection, which took place between October 2010 and February 2011. METHODS: Interviews were conducted face-to-face, by telephone or email. Framework analysis was applied to interview transcripts. RESULTS: Data suggested transfer was a period of flux, during which participants progressed from a service that was relatively prescriptive to one that called for autonomy. They appeared to go through three stages during this process: fracturing, acclimatising and integrating. The concept of liminality was used as a lens to explore data. Liminality describes those on the threshold of a new social position and rituals that bring meaning to such change. Rites of passage, such as being visited by a member of the adult team and a first appointment within this new healthcare setting, were important because they allowed for initiation into the workings of the adult unit. However, the absence of certain rituals, including a ceremony marking departure from paediatrics, might hinder progression towards becoming an adult patient. CONCLUSIONS: The concept of liminality proved useful for thinking about data. Additional work should explore whether it can be applied to different long-term conditions and if initiation rituals vary across services. Nurses could play a role in preparing adolescents by assessing their readiness to transfer on a regular basis and intervening to address individual needs. This would help with young people's shift from a paediatric to adult identity, hopefully preventing them from experiencing a prolonged liminal state post-transfer.

A qualitative study of the pre-operative preparation of children, young people and their parents' for planned continence surgery: experiences and expectations.

AIM: The aim of this study is to explore children's, young people's and parents' pre-operative experiences of continent stoma formation. BACKGROUND: Current research investigating continent stoma surgery focuses on surgical outcomes including complication rates, adherence to management regimes, self-management practices and levels of continence achieved. Despite reports of pre-operative anxiety in families undergoing continent stoma surgery, there has been a lack of research exploring pre-operative experiences, information needs or decision-making processes in this group. DESIGN: A qualitative study. METHODS: Forty-nine semi-structured interviews were conducted with 17 children, young people and their parents. Data were collected at key points in the surgical process that aimed to represent a longitudinal perspective of continent stoma formation. RESULTS: The interviews suggested that children's, young people's and parents' information needs in relation to the long-term implications of surgery and for their day-to-day lives were not being adequately met. The preparation process was described as being positively influenced by contact with a nurse specialist, being given time to make the decision and having access to different sources of information. CONCLUSION: Decisions regarding life-long planned surgery can be challenging. The individual involvement and information needs of children, young people and their parents need to be recognised during pre-operative preparation. RELEVANCE TO CLINICAL PRACTICE: Health professionals need to discuss the holistic implications of continent stoma surgery and provide families with the time and opportunity to consider surgery and access relevant sources of information pre-operatively.

Integrating telecare for chronic disease management in the community: what needs to be done?

BACKGROUND: Telecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community. METHODS: Large scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory. Drawn from telecare services in community and domestic settings in England and Scotland, 221 participants were included, consisting of health professionals and managers; patients and carers; social care professionals and managers; and service suppliers and manufacturers. RESULTS: Key barriers to telecare integration were uncertainties about coherent and sustainable service and business models; lack of coordination across social and primary care boundaries, lack of financial or other incentives to include telecare within primary care services; a lack of a sense of continuity with previous service provision and self-care work undertaken by patients; and general uncertainty about the adequacy of telecare systems. These problems led to poor integration of policy and practice. CONCLUSION: Telecare services may offer a cost effective and safe form of care for some people living with chronic illness. Slow and uneven implementation and integration do not stem from problems of adoption. They result from incomplete understanding of the role of telecare systems and subsequent adaption and embeddedness to context, and uncertainties about the best way to develop, coordinate, and sustain services that assist with chronic disease management. Interventions are therefore needed that (i) reduce uncertainty about the ownership of implementation processes and that lock together health and social care agencies; and (ii) ensure user centred rather than biomedical/service-centred models of care.

Established users and the making of telecare work in long term condition management: implications for health policy.

Increasingly policy for long term condition management is focussing on new technologies. Telecare is viewed as a means of making services more responsive, equitable, cost and clinically-effective and able to play a central part in mediating between service users, professionals, and service providers. It has also been identified as helping to establish patient self-management for long term conditions. In this paper we consider the social practices of the work of telecare integration and incorporation for patients, their interactions with professionals and the synergy or otherwise with policy makers' expectations for how patients approach, use and interact with services. The research took place in England and in Wales and involved qualitative interviews with 31 individuals. Our research suggests that, telecare services provide both an adequate substitution for traditional services and additional benefits such as minimising the need to travel and the added reassurance of regular external surveillance. However, the nature of patient work involved is 'low level' rather than requiring higher level interpretation of readings and decision making commensurate with realising a policy vision of more independent and responsible self -managers. Indeed a paradox of the reliance and acceptance of telecare is the creation of new relationships and dependencies rather than the diminution of reliance envisaged by policy. The illumination of practices around telecare provides evidence for policy makers and others to adjust the predictions and presumptions about how telecare might enable and promote more effective long term condition management.

The role of information in supporting self-care in vascular conditions: a conceptual and empirical review.

Self-care has the potential to make a significant contribution to vascular conditions, but engagement with self-care support has been limited. Lack of relevant information is highlighted by patients and policy-makers as an important barrier to effective self-care, and information provides a potentially efficient platform for changing behaviour. However, work within the social sciences has generally seen information as a necessary but insufficient driver of health behaviours. Furthermore, some groups (such as the socially disadvantaged) are expected to be less amenable to information interventions. We conducted an integrated conceptual and empirical review on information-based interventions for people with vascular disease (diabetes, heart disease and kidney disease). We reviewed conceptual and empirical work concerning the role and impact of information in self-care support to generate an explanatory framework to determine why information was effective or ineffective in encouraging self-care in patients with vascular conditions. This involved mapping relevant theories and models linking information and self-care. We also explored published systematic reviews of educational interventions in diabetes, coronary heart disease and chronic kidney disease to examine the role of information and evidence concerning its effectiveness and impact in different patient populations. The conceptual review identified variation among information interventions in terms of type, function, and their relationship to behaviour change techniques and psychological mediators of behaviour change. Key moderators of the effect of information included types of disorder, and patient capacity and resources. A wealth of educational interventions exists for diabetes and heart conditions, but the precise components of these interventions that are effective are difficult to identify. There is little evidence concerning optimal ways of tailoring interventions for socially disadvantaged groups other than ethnic minorities. A focus on printed information may not provide access to effective methods of information delivery (e.g. tailored information, use of narratives and user generated content). Developing a framework for the effective use of information needs to take account the full range of the factors identified.

Social networks, social capital and chronic illness self-management: a realist review.

BACKGROUND: Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context. AIMS: To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people's everyday lives. METHOD: A realist review method was used to search and appraise relevant quantitative and qualitative literature. FINDINGS: The review findings indicate that social networks play an important part in the management of long-term conditions. We found that social networks tend to be defined narrowly and are primarily used as a way of acknowledging the significance of context. There is insufficient discussion in the literature of the specific types of networks that support or undermine self-care as well as an understanding of the processes involved. This necessitates shifting the emphasis of self-care towards community and network-centred approaches, which may also prove more appropriate for engaging people in socially and economically deprived contexts.