Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels.

AIM: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. METHOD: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. RESULTS: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. INTERPRETATION: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.

Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

A qualitative exploration of children's lives with rare diseases.

BACKGROUND: Rare diseases encompass a diverse group of debilitating and sometimes life-threatening conditions that affect a small percentage of the population, posing a significant public health challenge. Despite their rarity, around 70% of these diseases afflict children, yet limited research has focused on their experiences. This study aimed to gain insights into the day-to-day challenges children living with rare diseases face. METHODS: We conducted semistructured one-to-one interviews with 11 children and young people (7-16 years) diagnosed with a range of rare diseases, purposively sampled from a tertiary pediatric healthcare setting in Ireland. We analyzed the interview transcripts, and themes were devised inductively. RESULTS: Two themes were identified: "Knowledge and Understanding of Rare Diseases" and "Fitting in Versus Feeling Different." These themes emerged across various settings-the home, hospital, school, and social environments-to illustrate the impact of rare diseases on the participants' daily lives. A conceptual framework was developed to illustrate how the children's knowledge, experiences, and emotions shape their identity in a rare disease context. CONCLUSIONS: Our analysis revealed a complex interplay between the participants' sense of belonging and their awareness of being different, influenced by the manifestations and demands of their rare conditions or illnesses. This duality in their identity was most pronounced in social settings, where the participants felt the most significant impact of their rare diseases. Understanding this interplay sheds light on the unique social challenges children with rare medical conditions face. Raising awareness about these conditions could mitigate these children's social challenges, fostering a more inclusive society for those with rare diseases.

Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study.

AIM: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. METHOD: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. RESULTS: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%). INTERPRETATION: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. WHAT THIS PAPER ADDS: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.

An examination of relational dynamics of power in the context of supported (assisted) decision-making with older people and those with disabilities in an acute healthcare setting.

INTRODUCTION: Supported (assisted) healthcare decision-making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long-held presumptions about who has access to valued decision-making resources, influence and power within a particular socio-cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. METHODS: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). RESULTS: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision-making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision-making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk-averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. CONCLUSION: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision-making. PATIENT OR PUBLIC CONTRIBUTION: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA-2016-1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

What Are the Care Needs of Families Experiencing Sudden Cardiac Arrest? A Survivor- and Family-Performed Systematic Review, Qualitative Meta-Synthesis, and Clinical Practice Recommendations.

INTRODUCTION: Cardiac arrest care systems are being designed and implemented to address patients', family members', and survivors' care needs. We conducted a systematic review and a meta-synthesis to understand family experiences and care needs during cardiac arrest care to create treatment recommendations. METHODS: We searched eight electronic databases to identify articles. Study findings were extracted, coded and synthesized. Confidence in the quality, coherence, relevance, and adequacy of data underpinning the resulting findings was assessed using GRADE-CERQual methods. RESULTS: In total 4181 studies were screened, and 39 met our inclusion criteria; these studies enrolled 215 survivors and 418 family participants-which includes both co-survivors and bereaved family members. From these studies findings and participant data we identified 5 major analytical themes: (1) When the crisis begins we must respond; (2) Anguish from uncertainty, we need to understand; (3) Partnering in care, we have much to offer; (4) The crisis surrounding the victim, ignore us, the family, no longer; (5) Our family's emergency is not over, now is when we need help the most. Confidence in the evidence statements are provided along with our review findings. DISCUSSION: The family experience of cardiac arrest care is often chaotic, distressing, complex and the aftereffects are long-lasting. Patient and family experiences could be improved for many people. High certainty family care needs identified in this review include rapid recognition and response, improved information sharing, more effective communication, supported presence and participation, or supported absence, and psychological aftercare.

How do nurses and midwives perceive their role in sexual healthcare?

BACKGROUND: Nurses and midwives role in sexual healthcare is essential to help patients, particularly women, ensure a satisfactory sexual wellbeing. Yet, these professionals often overlook this aspect of patients' health. Little is known regarding nurses and midwives' attitudes, views and experiences concerning sexual healthcare. Using a naturalistic inquiry approach, this qualitative study was conducted to overcome this limitation and gain insights into nurses and midwives' role in the delivery of sexual healthcare. METHODS: A purposive sample of nurses and midwives was chosen from different clinical sites. Data generated by focus group discussions were were analysed using the Framework Analysis while adopting different strategies to ensure rigour. The study aligns with the consolidated criteria for reporting qualitative research checklist. RESULTS: Five themes illustrated the participants' views and experiences. These are: 'Perceptions of sexuality', 'Appreciating the discussion around the individuals' sexual issues', 'Muting the discussion around the individuals' sexual issues, 'Coping with embarrassment', and 'Promoting nurses' and midwives' roles sexual healthcare'. Nurses and midwives discussed the importance of sexuality in the couple's life. They reported controversial views and highlighted many challenges that make them reluctant in playing an efficient role in sexual healthcare. They discussed many suggestions, mainly getting a solid sexual health education to become better equipped to meet patients' sexual health needs. CONCLUSION: Findings are critical to empower nurses and midwives, break the barriers in discussing sexual healthcare and integrate this aspects of care more actively and confidently in daily practice.

A systematic review and narrative synthesis of the experiences with caring for older people living with dementia in Sub-Saharan Africa.

BACKGROUND: In low- and middle-income countries, including sub-Saharan Africa little is known about the experiences with caring for people living with dementia. The purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at home. RESULTS: In total, 366 abstracts were identified and following screening, 19 studies were included in the synthesis. Six themes were identified: conceptualising dementia, caregiving arrangements, the impact of caregiving, caregiver identity and role, managing caregiving, unmet caregiver needs. CONCLUSION: There is a dearth of research in relation to caregiving for older people living with dementia in sub-Saharan Africa. There is need for better information campaigns and support programs directed at family and professional caregivers in this context.

'Language has been granted too much power'.1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment.

Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be 'seldom heard' or 'frequently ignored'. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. PUBLIC AND PATIENT CONTRIBUTION: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

Identification of quality indicators of public health nursing practice: "modified Delphi" approach.

OBJECTIVE: Identify process indicators to measure public health nursing practice during first postnatal visits in Ireland. DESIGN: Using a RAND/UCLA appropriateness- "modified Delphi" method, a two-round rating and ranking process was completed in 2016. Fifty-nine statements were reviewed for consensus and priority ranking. SAMPLE: The sample comprised a panel of 21 national and international experts. RESULTS: Fifty-nine indicators were identified and subsequently reduced across two rounds of consensus testing. Fifty-six indicators achieved consensus and priority ranking identified 13 indicators to measure care for mothers and 15 indicators to measure care for newborns resulting in 28 process indicators to enable Public Health Nurses (PHNs) to measure care during the first postnatal visit. CONCLUSIONS: Measurement of care using quality indicators plays an integral role in quality improvement. Developing quality indicators is important in improving care outcomes. This two round "modified Delphi" study combined with literature and previous qualitative findings identified process indicators to measure public health nursing practice at first postnatal visits and enables benchmarking. Developing quality indicators for public health nursing practice using a "modified Delphi" technique has enabled a platform to provide consensus amongst a panel of experts and identified key processes of care by PHNs and mothers.

Work environment challenging Irish public health nurses' care quality: First postnatal visit.

OBJECTIVES: Exploring views and experiences of public health nurses of their work environment and measurement of care practices at first postnatal visits. DESIGN: An exploratory qualitative design. Data collected using four focus groups and analyzed using thematic analysis. SAMPLE: Nineteen public health nurses from four health service regions in Ireland participated. RESULTS: Two themes emerged. Theme one identified "challenges of providing a quality service." Public health nurses identified workload demands and that the working environment can detract from the ability to provide a quality service. Challenges within the home, language barriers, and lack of support from management were key issues. Theme two identified "challenges of measuring quality of public health nursing practice." While Measuring practice through quantitative outcomes such as key performance indicators were viewed as inadequate to measure the quality of care provided, positive views of using quality process indicators to measure the quality of their practice emerged. CONCLUSIONS: Key issues concern the working environment of public health nurses and challenges of providing and measuring care practices. Absence of appropriate supports and resources means public health nurses work hard to provide quality care. Public health nurses were confident they would score high on quality process measurements of their practice.

Female genital mutilation and male involvement: Insights of men and women in two counties in Kenya.

This qualitative study, conducted in Meru and Kajiado counties in Kenya, explored the perceptions and attitudes of men and women regarding male involvement in FGM in order to inform the design of male involvement strategies in FGM abandonment. We used focus group discussions to collect the data which was then subjected to thematic analysis. Three main themes emerged from the data: i) culture and the role of men; ii) perceived awareness and knowledge of FGM among men, and iii) credible and customised education and engagement. The study found widespread agreement on the importance of male involvement in FGM abandonment. Culture played an important role in determining the extent of involvement, or lack thereof. We conclude that while culture needs to be respected it ought to be challenged to avoid the continued harm to girls. The potential of men as a collective to bring about change was evident, and policy makers and NGOs should utilise the power of male collectives to support efforts to abandon FGM.

Scoping review of factors influencing the implementation of group psychoeducational initiatives for people experiencing mental health difficulties and their families.

BACKGROUND: Despite evidence to support the effectiveness of psychoeducation for people experiencing mental health difficulties and their families, understanding issues around the implementation of such programmes is limited. AIM: The aim of this scoping review was to synthesise the peer-reviewed literature on barriers and enablers influencing the implementation of group psychoeducation in adult mental health services. METHODS: Using a pre-defined search strategy and PRISMA guidelines, four databases were systematically searched. Two reviewers independently screened and applied exclusion/inclusion criteria. Qualitative, quantitative, and mixed-methods studies were included if they provided empirical evidence on the barriers and enablers. Three reviewers independently extracted data. Following this, data were analysed using a five-level implementation framework. RESULTS: Eight articles met the inclusion criteria. Barriers to implementation were identified at all five levels of the framework: participant; practitioner; intervention; organisational; and structural level. Enablers to implementation were evident at four levels: participant; provider; intervention; and organisational level. CONCLUSIONS: The findings of the review provide preliminary information on factors that impact implementation. However, large-scale studies informed by implementation theories are required. In addition, other studies are needed to address the potential impact of different models of intervention and explore strategies to minimize obstacles and support sustainability.

Should I Seek Help for Sexual Difficulties? Middle-Aged Lebanese Women's Views.

This qualitative study explored the way middle-aged Lebanese women address their sexual difficulties. Data analysis revealed three overarching themes and subthemes. From these we developed a help-seeking behavior framework for sexual difficulties. The framework focuses on: the perception of the problem, the beliefs about help-seeking and the sources of help. This framework can be used to facilitate access to personalized sexuality-related care based on a better understanding of the complex interplay of personal, socio-cultural and service-related factors that influence help-seeking behavior for sexual problems.

Middle-aged Lebanese women's interpretation of sexual difficulties: a qualitative inquiry.

BACKGROUND: The study explores women's perception and experience of sexual difficulties. The need to address the subject was triggered by the scarcity of research that reflects on women's subjective views on sexual difficulties. This is particularly crucial for middle-aged women who frequently experience hormonal and psychosocial changes that may affect their sexual life. METHODS: Using in-depth individual and focus groups interviews, 52 Lebanese women aged 40-55 years discussed their thoughts, feelings and behaviours concerning sexual difficulties. Women were recruited purposefully from clinical and non-clinical settings to get maximum sampling variation that provided rich information and deep understanding of the subject. Recordings were transcribed verbatim and analysed about the framework analysis. Many strategies were adopted to ensure rigour. RESULTS: Women's narratives led to four themes: women's inability to communicate sexual desires and concerns; male sexual difficulties; marital conflicts; and sexual difficulties as context-bound. Women's sexual difficulties are driven by double standards and inhibiting sexual socialisation. Once married, many women had very challenging sexual experiences. They were obliged to silently bear their husbands' poor sexual performance to protect their masculinity and thus their social image and identity. Women's narratives also showed that marital conflicts, daily life problems as well as physical and psychological burdens further challenged their sexual wellbeing and contributed to their sexual difficulties. CONCLUSION: The study makes a unique contribution to voicing women's views and concerns as sexuality is insufficiently researched and reported in Lebanon. It emphasises the multidimensional nature of female sexual difficulties, particularly the gender-based norms that inhibit their sexual selves and profoundly affect their sexual wellbeing and capacity to claim their sexual likes and dislikes. Findings have implications on research and practice to help women prevent and overcome their sexual difficulties.

Assisted decision-making and interprofessional collaboration in the care of older people: a qualitative study exploring perceptions of barriers and facilitators in the acute hospital setting.

In recent years, there has been a move toward a more human rights-based approach to the issue of supported and assisted decision-making (ADM) with legislative changes strengthening the formal right for older people to participate in care planning and decision-making. Ireland's Assisted Decision-Making (Capacity) Act, 2015 breaks from traditional views of capacity to consider the uniqueness of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care. We carried out 26 semi-structured audio-recorded interviews with a convenience sample of HSCPs working in two acute hospitals and subsequently confirmed the results. HSCPs identified several barriers to, and enablers of, ADM in acute hospitals that were categorized into three key themes: Building meaningful engagement with older people and their family carers; barriers and enablers associated with interprofessional collaboration and barriers and enablers associated with the environment. Our findings suggest that despite concrete policy and legislative underpinnings to ADM, this was not always evident in practice and suggests the need for specialized education and training on ADM in practice settings.

The Needs of Families During Cardiac Arrest Care: A Survivor- and Family-led Scoping Review Protocol.

INTRODUCTION: Sudden cardiac arrest is a leading cause of death. Family members often witness the event and attempt resuscitation. The physiological and psychological impact of a loved one's death, witnessed or unwitnessed, can be significant and long-lasting. However, little is known about the care needs of families during the cardiac arrest care of a loved one. This scoping review protocol was designed with, and will be performed in partnership with, persons with lived experience of sudden cardiac arrest (survivors and family members of survivors and nonsurvivors alike). METHODS: The review will be performed in accordance with accepted methods such as the Arksey and O'Malley methodology framework and the Levac extension. We will search multiple databases, and Google Scholar for both qualitative and quantitative scientific literature. Articles will be screened, extracted, and analyzed by a team with lived experience of cardiac arrest. Two reviewers will conduct all screening and data extraction independently. A descriptive overview, tabular and/or graphical summaries, and a directed content analysis will be carried out on extracted data. DISCUSSION: This protocol outlines a planned literature review to systematically examine the nature of existing evidence to describe what the care needs of families experiencing the cardiac arrest of a loved one are. Such evidence will contribute to the development of strategies to meet identified care needs. Persons with lived experience participated in the creation of this protocol, and they will also participate in the execution of this review as partners and coinvestigators, not as research subjects or participants. The results of the scoping review will be disseminated upon completion of the work described in this protocol.

Renegotiating dimensions of the self: A systematic review and qualitative evidence synthesis of the lived experience of self-managing rheumatoid arthritis.

BACKGROUND: As chronic illnesses, such as rheumatoid arthritis (RA), place an increased burden on health-care systems, the ability of individuals to self-manage these diseases is crucial. OBJECTIVE: To identify and synthesize the lived experience of self-management described by adults living with RA. DESIGN: A systematic search of five electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO and ASSIA) was undertaken to identify relevant studies. Data were extracted and quality-assessed using CASP guidelines. A meta-synthesis was conducted based on Thomas and Harden's thematic synthesis approach. RESULTS: The search identified 8423 publications. After removing duplicates, 6527 records remained of which 32 studies met the inclusion criteria. Quality of studies was moderate to high, yet a considerable lack of reflection on researcher bias was evident. Our analysis identified 28 dimensions of self-management RA across six domains: (a) cognitive-emotional, (b) behavioural, (c) social, (d) environmental, (e) physical and (f) technological. Cognitive-emotional experiences dominated the analysis. Renegotiating 'the self' (self-concept, self-esteem, self-efficacy) was a key focus of self-management among individuals with RA. CONCLUSION: Our findings highlight the focus of 'the self' as a central concern in the self-management of RA. Standardized self-management programmes may primarily focus on disease management and daily functioning. However, we suggest that personal biographies and circumstances should move to the fore of self-management support. REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews 2018: CRD42018100450. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was not explicit in this review. However, three authors provided a patient perspective on the self-management of arthritis and autoimmune disease.