Social network participation towards enactment of self‐care in people with chronic obstructive pulmonary disease: A qualitative meta‐ethnography

Abstract Background How people with chronic obstructive pulmonary disease (COPD) engage with supportive social networks to enhance self‐care is not understood. The personal rationales for participation in socially directed support have not been addressed in the literature. To determine how people with COPD identify, engage and participate in socially supportive self‐care practices, we conducted a systematic review and meta‐ethnography of qualitative studies. Methods A systematic literature search was conducted between June 2010 and June 2021. Of 3536 articles, 8 fulfilled the inclusion criteria. Using a meta‐ethnography approach to the qualitative synthesis, new concepts were derived from the data to identify aligning themes and develop a conceptual model. Findings Interpretations from the papers yielded concepts of (1) accountability and personal responsibility in self‐care, (2) valued positive relationships with clinicians, (3) understanding of illness through shared and personal experiences and (4) acknowledging social networks in fostering self‐care engagement in people with COPD. The independence‐experience (Index) model of synthesized (third order) interpretations highlighted the processes of social networks and self‐care practices: (a) fear or avoidance of dependency, (b) learning from experiences of adaptive self‐care behaviours and (c) including valued practices in self‐care. Self‐care strategies are formed through illness experiences and relatable social encounters. Conclusion The model derived from the third‐order interpretations is a framework to describe socially supported self‐care and can be used to direct future self‐care strategies and target interventions for people with COPD. Patient or Public Contribution The findings and model were presented to the long‐term conditions patient and public involvement group. The manuscript is coauthored by a public representative.


| METHODS
A systematic review and meta-ethnography of qualitative studies was undertaken, 25 using the seven-step method of meta-ethnography, as described by Noblit and Dwight Hare 26,27 and exemplified by Sinnott et al. 28 In Step 1, we developed a specific research question and its contribution to the field.
In Step  OR COPD OR Emphysema AND Self-management OR self-care OR self-management support OR social network support AND qualitative studi.
Initial titles and abstracts of papers were read by one reviewer (L. W). Full articles of potentially eligible studies were reviewed by two researchers (L. W. and E. S). Inclusion criteria focused on qualitative studies that explored the enactment of socially supported self-management in people with COPD. The quality of the studies included was assessed using a quality appraisal tool developed by the British Sociological Association. 29 This tool has been widely used in similar reviews. 30,31 Quality was not a criterion to exclude studies, but instead provided critical insights into the methods used for data collection and analysis. 28 The selection process of studies is presented in the PRISMA flow diagram ( Figure 1). 32 Selected studies aligned to the research question on the basis of detailed inclusion and exclusion criteria (Table 1).

In
Step 3, selected studies were read and reread by two authors (L. W. and E. S). Study findings were entered into an extraction table (Table 2). This included both first-order interpretations (views of the participants) and second-order interpretations (views of the authors; Table 3).
In Step 4, we determined how the studies were related to each other by comparing individual study findings. The ontological stance of subjectivism, or interpretivism, was selected. 41 In Step 5, studies were 'translated into each other', which involved examining the contribution of each study to a key theme or concept. Each theme or concept emerged from individual studies, but was also viewed as relevant to the studies included in the synthesis.
The process of data extraction and linking of the concepts is presented in Table 4.
Step 6 involved generating third-order interpretations from the main findings of the synthesis. These are new concepts directly derived from the interpretation of second-order concepts (Table 4). To demonstrate this process, an extraction table was used to collate and analyse the qualitative data. This created a visual breakdown of concepts from the studies included, enabling the synthesis of linked concepts across studies 27 (Tables 2 and 4). A line of argument synthesis 27,31 (synthesis refinement) linked common concepts together into new theory, in turn demonstrating that the studies agreed with each other and could be translated back into one another (Table 4).

Finally, Step 7 reports the synthesis. The Supporting Information
Tables and the discussion present the stages of synthesis and findings, which were further depicted through the development of conceptual models to illustrate interactions of the phenomenon examined (Tables 3 and 4  Qualitative studies were included in the review if they addressed the broad concepts of socially supportive social networks in COPD self-management, engagement and social participation in network support and examined participation through the lens of a person with COPD. Studies were excluded if they focused on a single selfmanagement intervention (a specific eHealth programme), focused on a specific medical treatment of COPD care delivery (e.g., pulmonary rehabilitation or oxygen therapy), perspectives of family carers or health professionals or were not reported in the English language.
F I G U R E 1 Prisma flow diagram of literature review and selection. COPD, chronic obstructive pulmonary disease Eight studies were included in this review. Slevin et al., 33 Sheridan et al., 34 Apps et al., 35 Fotokian et al., 36 Franklin et al., 37 Glenister et al., 39 Zeb et al. 38 and Willard-Grace et al. 40 reported enactment and engagement in supportive social networks for illness management of COPD using a range of approaches. These were digital health technology (DHT) for symptom assessment and to aid symptom negotiation; experiences of enacting social network support for people from diverse cultural backgrounds; personal perceptions of COPD; managing symptoms of COPD including dyspnoea; and problem solving in older people with COPD and their networks and understanding how people maintain a normal life with disease using social network support. Studies included descriptions of social interventions, including lay health coaching for vulnerable people with COPD, and family support networks.
Studies were conducted in Australia, 39 New Zealand and the Pacific Islands, 34 the United States of America, 40 Iran 36 and Pakistan, 38 and the United Kingdom. 33,35,37 Key characteristics of the included studies (e.g., sample, methods and findings) were added to a data extraction table (Tables 2 and 4). A concept map, Figure 2, is presented to illustrate the alignments and links of the concepts to justify interpretations. The concept map forms the basis of a conceptual model of engagement and enactment of SSMS in people with COPD.

| Synthesized findings
This meta-ethnography generated four second-order interpretations: Balancing social network participation with self-care accountability and personal responsibility.
The value of positive engagements with healthcare professionals where socially supported self-care is relevant.
Developing a personal understanding of illness through social participation, shared and personal experiences.
Recognizing social network support to guide and validate personal choices for people with COPD.
These concepts suggest that enactment of self-care practices and social engagement is perceived as challenging due to the everyday uncertainty of the disease and previous negative illness experiences. Individuals living with COPD who were confident in the knowledge of their illness and interpretation of illness symptoms felt more able to engage with supportive social networks, compared to those who had not yet been able to comprehend their own illness experiences or the impact of their symptoms on their daily lives.
1. Balancing social network participation with self-care accountability and personal responsibility.
The progression of COPD and mobility limitations caused by increasing breathlessness creates the need to redistribute everyday work, heavy work and family responsibility. 35 People with COPD reported that they would like to balance their illness work with existing habits and understood that they needed to make the 'right' choices in terms of lifestyle and self-care. However, the challenges to have the discipline to do this created a perceived conflict of personal accountability for their disease and guilt as they felt responsible for their own illness and unable to control their symptoms. 42 'I know I have to take the responsibility; it's harmful to me if I don't. This is what the nurse said' (P19 cited in Franklin 37 ).

Inclusion criteria Rationale
Qualitative studies focused on personal narratives and the perspectives of people with COPD The aim is to integrate and reinterpret qualitative findings Studies discussing people with COPD To provide specificity of the long-term condition and the nature of the types of interventional studies Studies addressing the broad concepts of socially supportive social networks in COPD self-management or engagement and social participation in network support To understand participation in social supportive self-care or self-management support Fulfils quality criteria 29 Guidelines for quality appraisal to ensure that the methods and analysis of the selected studies were rigorous.

Exclusion Rationale
Non-English Language Unable to interpret or integrate Focused on a nuanced area of COPD care delivery (pulmonary rehabilitation or oxygen therapy) Interventional specificity Focused on a single self-management intervention (a specific eHealth programme) Interventional specificity Not disease-specific Not specific to the investigational population If the studies are from the perspective of health professionals or carers alone Not a personal narrative from a person with COPD Abbreviation: COPD, chronic obstructive pulmonary disease.

Methods and concepts
Slevin et al. 33 Sheridan et al. 34 Apps et al. 35 Fotokion et al. 36 Franklin 37 Zeb et al. 38 Glenister et al. 39 Willard-Grace et al. 40 Psychosocial needs in SMS

Methods and concepts
Slevin et al. 33 Sheridan et al. 34 Apps et al. 35 Fotokion et al. 36 Franklin 37 Zeb et al. 38 Glenister et al. 39 Willard-Grace et al. 40 Third People with COPD reported an 'assumed responsibility' 37 ; clinicians and family assume that they are able to make informed choices regarding self-care activities, even though some people report feeling unsure of what types of activity constituted as selfcare and adopted personal strategies on more of a 'trial and error' basis.
Self-care practices were often self-initiated as a number of individuals living with COPD understood that they have responsibilities, such as using inhalers correctly, smoking cessation or exercise and attempted to enact these. These enactments are based on personal and peer experiences, experiential constructs fostered by a sense of knowing. 36 This 'knowing' is built on experiences, both personal and from comparing their experiences with others, rather than informed or guided by evidence or teaching and professional support from clinicians.
'When I spoke with my friends and relatives and told them that I had this problem, they taught me a lot and have increased my knowledge' (Participant 1). 36 Self-care, therefore, is initiated and developed through behaviours based on personal and shared experiences rather than formal support. 35 Often, peer influences are not considered among individuals with COPD to be self-care practices, but rather more a set of personal behaviours that enabled people to successfully redesign and manage their day-to-day tasks. However, it is acknowledged that this approach often lacked health professional input, based on knowledge derived from experiential constructs that can either positively or negatively influence self-care adoption and participation. Community and peer interactions offered an inclusivity to self-care, providing a prolonged sense of independence, even when the disease was progressing.
'They're great. They lift me up on that thing (disability access ramp) because I've got the oxygen' (P6 39 in reference to volunteer community transport service).
However, the failure to perform self-care practices successfully among people with COPD can lead to an increased sense of self-blame. Some felt that personal expectations to manage alone were too high and support was not appropriately tailored to their individual needs, causing personal conflicts in adaptive versus taught self-care practices. 35 DHT has the potential to combine experiential knowledge with health professional-directed support.
DHT can offer disease-specific information and advice around specific symptoms, through testimonials, peer and web applications recording and measuring symptoms, reassuring people by finding people with comparable symptoms to build online social support. 33 2. The value of positive engagements with healthcare professionals for initiating socially supported self-care.
In terms of participating in their own care, people with COPD were more willing to engage in consultations when they trusted the healthcare professional and viewed them as investing time in the consultation. 34 and figure out, say if it was bad at the time'(P127). 33 3. Developing a personal understanding of illness through social participation, shared and personal experiences The perceived physical and emotional struggle with breathlessness is a defining recurrent issue of living with COPD. 35,44,45 Persistent daily respiratory symptoms limit the ability to engage effectively in self-care practices due to fear, anxiety and fatigue. In turn, these physical and emotional symptoms require adaptation of tasks (pacing) and the need to change behaviours that trigger symptoms. 35 To be successful at managing COPD, patients must adapt their life to incorporate daily symptoms of breathlessness and fatigue.
They are required to manage breathless, fatigue, cough and wheeze and flareups of these symptoms whilst continuing with People with COPD reported not associating many of these symptoms with COPD, and preferred a trial and error or learning by experience approach to adapting to their symptoms and self-care practices. 35 The shared validation of these symptoms was welcomed and professionals. [35][36][37]40 People with COPD often seek information about their disease from their peers; through social participation, information is valued to stay abreast of symptoms. However, this may not always be clinically correct. 34  However, all studies noted that people with COPD value social support and seek to reduce dependencies when they can.

| Third-order interpretations
Third-order interpretations are the results of the reinterpretation and translation of the second-order interpretations, Figure 2. This section can also be termed synthesis refinement. 31 Experiential knowledge has formed from working through episodes of illness. Illness experience is formed through personal exposure, having the disease and experiencing the symptoms and witnessing the experiences of illness in people with whom they have close relationships, and their peers. [33][34][35][36] Valued practices are concerned with the practices that people value in their lives, their rituals and activities. In this analysis, these also extend to healthcare professionals and society and the value of people in society beyond illness. 36,37 People with COPD juggle the looming inevitability of dependence, whilst managing the disease and working to retain independence. By seeking, gaining and using experiential knowledge in disease F I G U R E 2 Principles of enactment and engagement. Further synthesis of second-order to third-order themes. COPD, chronic obstructive pulmonary disease management, people can maintain the balance between dependence and independence.
In these personal experiences with disease, day-to-day management (i.e., I carried less shopping) or in acute fluctuations of disease (i.e., I used my inhaled therapy earlier than I usually do and I didn't get so unwell) enables a process of self-appraisal of disease phenomena. This appraisal draws from narratives or experiences of what has personally worked well in the past. Importantly, 'working well' is what has enabled independence, not necessarily what is deemed to be clinically correct disease management. Therefore, if a personal experience is of a peer (friend or relation) dying shortly after stopping smoking, then this is experiential knowledge. 47 This suggests to people that smoking cessation may contribute to the deterioration of symptoms, lead to the risk of an earlier death and remove a valued activity (smoking). Therefore, people with COPD may dismiss smoking cessation as a viable self-care option due to their experiential knowledge and the enjoyment they get from smoking, not the advice from a health professional. 33,36,38 These third-order interpretative accounts led to three broader overarching concepts that influence both positive and negative engagement along a continuum.
1. Experiential knowledge-Learning from the personal successes and failures of adaptive self-care behaviours to inform future selfcare practices.

Inclusion of valued practices in SSMS.
3. Inevitability of dependence-The fear or avoidance of the inevitability of dependency.
The personal successes achieved from SSMS with adaptive self-care behaviours can positively inform future self-care practices and choices.
Conversely, negative experiences of social self-management can reduce self-efficacy and experiential failures can leave people with a sense of powerlessness, which in turn increases feelings of dependency. Figure 3A,B shows the Index model that presents the independence experience (Index) continuum. Each person with COPD is either a novice to self-care or has personal experience based on personal knowledge and previous experience of the disease. Individuals living with COPD move both between novice and experience and their own self-care enactment, whilst simultaneously striving to remain as independent as they can for as long as they can.
The continuum can be influenced positively through peer support structures and positive social networks, but can be influenced negatively when isolated and a novice in COPD. 48 4. acceptance of the disease and its limitations by themselves and others. 33,34,[36][37][38][39][40]50 Therefore, engaging with COPD social networks to enhance selfcare requires multiple skills of negotiation, personal organisation and opportunities to engage in positive peer interactions to be successful.
COPD has a complex, uncertain trajectory, meaning that the pursuit of clinical and social stability is challenging. The longer people live with COPD, the more opportunity there is to enhance the skills and knowledge of self-care, but these enhanced skills are often against a backdrop of failing health and striving to maintain independence. This study advances COPD self-care beyond taught healthcare professional interactions towards a more complex interplay with personal and peer-acquired knowledge and a perceived fear of dependence.
Through developing an understanding of personally valued practices and developing tailored healthcare encounters, one can improve engagement with socially supportive self-care practices in people with COPD. However, practitioners often prioritize education and information provision over more psychosocial approaches to self-care. 51 Russell et al. 12  Engaging in self-management activities is positively correlated with the length of time living with the condition 53 and was supported by the public review of the findings. This aligns with the conceptual model ( Figure 3B) in terms of considering the importance of experiential learning in developing a personal and experiential sense of knowing, which is enhanced over time due to living with COPD. 36 This knowing developed from experiential constructs can, however, both positively and negatively influence participation in SSMS and relies on peer information and a wish on the part of the individual living with COPD to reduce a perceived sense of dependence. 36,37,40 Prompting the broadening of social networks, as in lay coaching, to support interpretation of symptoms and shared decision making, 40 can promote independence in people with COPD, enabled through feeling informed to make decisions about their own care, through peer discussion or valued relationships with healthcare professionals. 48,49 The conceptual model illustrates the independence and experience continuum of engagement in socially supportive self-care behaviours among people living with COPD. Figure 3A shows the processes of striving for independence, whilst learning self-care practices and management behaviours improves with experience. Figure

| Implications for future research policy and practice
The conceptual model can be translated into a clinical practice tool. It can be used in clinical consultations to direct social prescribing (linking people to social activities to improve health outcomes) or social support decisions in partnership with healthcare professionals.
The Index model could serve to provide a framework to structure patient-healthcare professional interactions 12 and facilitate conversations on the role of social support and networks in supporting SSMS and self-care practices among people with COPD.
Healthcare professionals should consider integrating peer support and lay coaching into existing healthcare pathways to encourage purposefully selected peer encounters to enable supportive, positive self-care practices. Current work to test the conceptual model with healthcare professionals is in progress.

| Strengths and limitations
This qualitative meta-ethnography has strength in terms of the scrutiny of the methodology, drawn from several sources, 26 Comments from the patient and public involvement (PPI) group meeting on 10 December 2020. Permission was obtained from the members of the PPI groups to share their verbatim comments. The findings of the study were presented in diagrammatic form; the group was asked three questions. Each question was discussed in turn.
These were the comments from the feedback and the discussion.
Question 1: Do these findings feel 'real'-can you relate them to how people with long term conditions my feel?
Question 2: Do you think they are a fair representation of people with a long-term respiratory condition?

Comments
'Very similar to work on IBD-SM is important, and the collaboration aspect is key-you need to be able to build a relationship with your health professional to make it work' (PPI contributor 1).
'Self-management needs to be INFORMED self-management, it only works if you are informed and understand how to manage yourself. Especially when an adolescent, your views on your illness and your ability to manage your illness differ with age' (PPI contributor 2).
'Having clinicians open to discuss SMS and appreciate patient experiences is important. We are living with the disease. Without the creation of a two-way challenge and dialogue we are likely to fail at SM. We need reciprocal relationships with healthcare' (PPI contributor 3).
'As a post-transplant patient, I will always be a patient, so therefore have a long-term condition. I benefit from shared experiences and groups with other transplant patients. Debates and decisions on care, vaccination with a compromised immune system' (PPI contributor 4). Comments 'Perhaps you are not reflecting access to support at crisis points, and when people are alone. This is the day to day management, discussing the differences when a person is in a crisis-such as a respiratory crisis is important' (PPI contributor 2).
'Anxiety and breathlessness do draw and the work on asthma research' (PPI contributor 5).
'Mention the importance of technological advancements and collaboration with health care and digital' (PPI contributor 1).
The PPI group broadly concur with the findings and the application of the findings in people with long-term conditions and in real-world scenarios. Crisis action plans do have a place and the social network approach could be used to support crisis decision making.
However, more work needs to be completed to understand the role of socially supported self-management at the point of crisis decision making. The PPI group were overall supportive of the conceptual model and particularly valued the core aspects of involvement in care and treatment planning and the inclusion of social or peer influences (PPI contributors 1, 2, 3). Engaging clinical teams in discussing and implementing 'valued activities and a more psychosocial approach to SMS' resonated with the group, therefore this is something to be considered as part of routine care in people with COPD and LTC.