Mixed methods feasibility and usability testing of a childhood obesity risk estimation tool.

BACKGROUND: A Childhood Obesity Risk Estimation tool (SLOPE CORE) has been developed based on prediction models using routinely available maternity and early childhood data to estimate risk of childhood obesity at 4-5 years. This study aims to test the feasibility, acceptability and usability of SLOPE CORE within an enhanced health visiting (EHV) service in the UK, as one context in which this tool could be utilised. METHODS: A mixed methods approach was used to assess feasibility of implementing SLOPE CORE. Health Visitors (HVs) were trained to use the tool, and in the processes for recruiting parents into the study. HVs were recruited using purposive sampling and parents by convenience sampling. HVs and parents were invited to take part in interviews or focus groups to explore their experiences of the tool. HVs were asked to complete a system usability scale (SUS) questionnaire. RESULTS: Five HVs and seven parents took part in the study. HVs found SLOPE CORE easy to use with a mean SUS of 84.4, (n = 4, range 70-97.5) indicating excellent usability. Five HVs and three parents took part in qualitative work. The tool was acceptable and useful for both parents and HVs. Parents expressed a desire to know their child's risk of future obesity, provided this was accompanied by additional information, or support to modify risk. HVs appreciated the health promotion opportunity that the tool presented and felt that it facilitated difficult conversations around weight, by providing 'clinical evidence' for risk, and placing the focus of the conversation onto the tool result, rather than their professional judgement. The main potential barriers to use of the tool included the need for internet access, and concerns around time needed to have a sensitive discussion around a conceptually difficult topic (risk). CONCLUSIONS: SLOPE CORE could potentially be useful in clinical practice. It may support targeting limited resources towards families most at risk of childhood obesity. Further research is needed to explore how the tool might be efficiently incorporated into practice, and to evaluate the impact of the tool, and any subsequent interventions, on preventing childhood obesity.

Exploring the use of social network interventions for adults with mental health difficulties: a systematic review and narrative synthesis.

BACKGROUND: People with mental health difficulties often experience social isolation. The importance of interventions to enhance social networks and reduce this isolation is increasingly being recognised. However, the literature has not yet been systematically reviewed with regards to how these are best used. This narrative synthesis aimed to investigate the role of social network interventions for people with mental health difficulties and identify barriers and facilitators to effective delivery. This was undertaken with a view to understanding how social network interventions might work best in the mental health field. METHODS: Systematic searches using combinations of synonyms for mental health difficulties and social network interventions were undertaken across 7 databases (MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Library, Web of Science) and 2 grey literature databases (EThoS and OpenGrey) from their inception to October 2021. We included studies reporting primary qualitative and quantitative data from all study types relating to the use of social network interventions for people with mental health difficulties. The quality of included studies was assessed using the Mixed Methods Appraisal Tool. Data were extracted and synthesised narratively. RESULTS: The review included 54 studies, reporting data from 6,249 participants. Social network interventions were generally beneficial for people with mental health difficulties but heterogeneity in intervention type, implementation and evaluation made it difficult to draw definitive conclusions. Interventions worked best when they (1) were personalised to individual needs, interests and health, (2) were delivered outside formal health services and (3) provided the opportunity to engage in authentic valued activities. Several barriers to access were identified which, without careful consideration could exacerbate existing health inequalities. Further research is required to fully understand condition-specific barriers which may limit access to, and efficacy of, interventions. CONCLUSIONS: Strategies for improving social networks for people with mental health difficulties should focus on supporting engagement with personalised and supported social activities outside of formal mental health services. To optimise access and uptake, accessibility barriers should be carefully considered within implementation contexts and equality, diversity and inclusion should be prioritised in intervention design, delivery and evaluation and in future research.

The role of social networks in the self-management support for young women recently diagnosed with breast cancer.

It is widely acknowledged that social network support plays an important role in the quality of life and illness management of breast cancer survivors. However, the factors and processes that enable and sustain such support are less well understood. This paper reports baseline findings from a prospective UK national cohort of 1,202 women with breast cancer (aged <50 years at diagnosis), recruited before starting treatment, conducted in 2016-2019. Descriptive, univariate and multivariate regression analyses explored associations between the individual, and network member characteristics, and the type of support provided. Social network members provided a substantial level of illness-related, practical and emotional support. Highest contribution was provided by friends, followed by close family members. The social network members of women who did not have a partner provided a higher level of support than those in networks with a partner. Women without higher education were more reliant on close family members than those with higher education, and this was more so for women without a partner. Women with higher education without a partner were more reliant on friends and were overall best supported. Women without higher education who did not have a partner were overall least well supported. They had much smaller networks, were highly reliant on close family members, and on high level contributions from all network members. There is a need to develop network-based interventions to support people with a cancer diagnosis, prioritising support for the groups identified as most at risk. Interventions that support engagement with existing network members during treatment, and those that help extend such networks after treatment, are likely to be of benefit. A network perspective can help to develop tailored support and interventions by recognising the interactions between network and individual level processes.

Household food insecurity risk indices for English neighbourhoods: Measures to support local policy decisions.

BACKGROUND: In England, the responsibility to address food insecurity lies with local government, yet the prevalence of this social inequality is unknown in small subnational areas. In 2018 an index of small-area household food insecurity risk was developed and utilised by public and third sector organisations to target interventions; this measure needed updating to better support decisions in different settings, such as urban and rural areas where pressures on food security differ. METHODS: We held interviews with stakeholders (n = 14) and completed a scoping review to identify appropriate variables to create an updated risk measure. We then sourced a range of open access secondary data to develop an indices of food insecurity risk in English neighbourhoods. Following a process of data transformation and normalisation, we tested combinations of variables and identified the most appropriate data to reflect household food insecurity risk in urban and rural areas. RESULTS: Eight variables, reflecting both household circumstances and local service availability, were separated into two domains with equal weighting for a new index, the Complex Index, and a subset of these to make up the Simple Index. Within the Complex Index, the Compositional Domain includes population characteristics while the Structural Domain reflects small area access to resources such as grocery stores. The Compositional Domain correlated well with free school meal eligibility (rs = 0.705) and prevalence of childhood obesity (rs = 0.641). This domain was the preferred measure for use in most areas when shared with stakeholders, and when assessed alongside other configurations of the variables. Areas of highest risk were most often located in the North of England. CONCLUSION: We recommend the use of the Compositional Domain for all areas, with inclusion of the Structural Domain in rural areas where locational disadvantage makes it more difficult to access resources. These measures can aid local policy makers and planners when allocating resources and interventions to support households who may experience food insecurity.

Implementing a digital tool to support meaningful engagement with socially isolated or lonely older adults.

Social isolation and loneliness are significant concerns in community dwelling older adults due to associated poorer health outcomes, inadequate crises responsiveness and increased societal burdens of care and cost. Generating Engagement in Networks Involvement (GENIE) is an online evidence-based, client-centred social network tool piloted by community-aged care services in Sydney, Australia. GENIE facilitates access to community resources, activities and people to extend or re-establish a client's social connections. This study aimed to identify GENIE's potential to maintain and promote social connections in older adults from the perspective of allied health professionals who could deliver GENIE. This qualitative exploratory study involved 33 participants on an emerging placement across two organisations who piloted GENIE. Data included consensus and priority statements produced from six nominal group technique-facilitated discussions, and an inductive thematic analysis of student documentation and all consensus statements. The main findings indicated that participants prioritised GENIE's clinical advantages, implementation barriers and recommendations for future implementation. The inductive thematic analysis revealed the two themes of practice applications, and client and professional experiences when using GENIE. As a time-efficient and personalised intervention, the research team concluded that GENIE could empower service providers to address the overarching needs of clients through rapidly connecting older adults to resources of their interests within the overburdened Australian-aged care system.

Adapting a social network intervention for use in secondary mental health services using a collaborative approach with service users, carers/supporters and health professionals in the United Kingdom.

BACKGROUND: Social integration, shared decision-making and personalised care are key elements of mental health and social care policy. Although these elements have been shown to improve service user and service-level outcomes, their translation into practice has been inconsistent and social isolation amongst service users persists. AIM: To co-adapt, with service users, carers/supporters and health professionals, a web-based social network intervention, GENIE™, for use in secondary mental health services. The intervention is designed to support social activity and preference discussions between mental healthcare professionals and service users as a means of connecting individuals to local resources. METHODS: In Phase 1 (LEARN), we completed two systematic reviews to synthesise the existing evidence relating to the i) effectiveness and ii) the implementation of social network interventions for people with mental health difficulties. We undertook semi-structured interviews with a convenience sample of 15 stakeholders previously involved in the implementation of the intervention in physical healthcare settings. Interviews were also conducted with 5 national key stakeholders in mental health (e.g., policy makers, commissioners, third sector leads) to explore wider implementation issues. In Phase 2 (ADAPT), we worked iteratively with eight service users, nine carers, six professionals/volunteers and our patient and public advisory group. We drew on a framework for experience-based co-design, consisting of a series of stakeholder consultation events, to discuss the use of the social network intervention, in mental health services. Participants also considered factors that could serve as enablers, barriers, and challenges to local implementation. RESULTS: Across the stakeholder groups there was broad agreement that the social network intervention had potential to be useful within mental health services. In terms of appropriate and effective implementation, such an intervention was predicted to work best within the care planning process, on discharge from hospital and within early intervention services. There were indications that the social connection mapping and needs assessment components were of most value and feasible to implement which points to the potential utility of a simplified version compared to the one used in this study. The training provided to facilitators was considered to be more important than their profession and there were indications that service users should be offered the opportunity to invite a carer, friend, or family member to join them in the intervention. CONCLUSION: The GENIE™ intervention has been co-adapted for use in mental health services and a plan for optimal implementation has been co-produced. The next phase of the programme of work is to design and implement a randomised controlled trial to evaluate clinical and cost effectiveness of a simplified version of the intervention.

Supporting and enabling health research in a local authority (SERLA): an exploratory study.

BACKGROUND: The use of research evidence to underpin public health practice and policy decisions in local government is strongly promoted but its implementation has not been straightforward. This study aimed to explore the factors, relationships and processes that contribute towards accessing, using, and generating research evidence that is relevant to local authority public health and social care and shapes its practice. METHODS: Semi-structured individual interviews with elected councillors, officers directly involved with public health and social care and with community members from one urban unitary authority in South England were conducted. Interviews were audio recorded, transcribed verbatim and thematically analysed. RESULTS: Fourteen participants took part in the semi-structured interviews. Local knowledge and evidence are prioritised, and anecdotal evidence is valued. The Director of Public Health was the principal source of information and support. Academics were rarely mentioned as information sources, and their involvement was ad hoc. The use of research evidence varied between individuals and departments, with wider engagement among public health specialists. Key barriers to the use of research evidence included access (not reported among public health professionals), research timeliness, local applicability, competence in finding and interpreting evidence and the role of research evidence within a political context. Public health and adult social care teams are not currently research active or research ready. Major barriers exist due to financial constraints and the socio-political context of local authorities. COVID-19 disrupted siloed ways of working, strengthening and opening potential collaborations within the local authority. This changed perspectives about the value of research but is likely time-limited unless underpinned by sustainable funding. CONCLUSION: Creating strategic level roles within local government to work with the Director of Public Health to champion the research agenda and embedding researchers within and across teams would build capacity for local authorities to sustainably co-create, undertake, and use evidence to better inform future actions.

Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis.

BACKGROUND: Individuals' social networks and social support are fundamental determinants of self-management and self-efficacy. In chronic respiratory conditions, social support can be promoted and optimized to facilitate the self-management of breathlessness. OBJECTIVE: This study aimed to identify how online and offline social networks play a role in the health management of older patients with chronic respiratory conditions, explore the role of support from online peers in patients' self-management, and understand the barriers to and potential benefits of digital social interventions. METHODS: We recruited participants from a hospital-run singing group to a workshop in London, the United Kingdom, and adapted PERSNET, a quantitative social network assessment tool. The second workshop was replaced by telephone interviews because of the COVID-19 lockdown. The transcripts were analyzed using thematic analysis. RESULTS: A total of 7 participants (2/7, 29%, men and 5/7, 71%, women), with an age range of 64 to 81 years, produced network maps that comprised between 5 and 10 individuals, including family members, health care professionals, colleagues, activity groups, offline and online friends, and peers. The visual maps facilitated reflections and enhanced participants' understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative and complementary sources of information. Participants in the latter type of network tended to communicate more openly and comfortably about their illness, shared the impact of their illness on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. Participants described the potential benefits of expanding their networks to include online peers as sources of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves and immediate family were reported by some as barriers to engaging with online peer support. CONCLUSIONS: In this small-scale study, the social network assessment tool proved feasible and acceptable. These data show the value of using a social network tool as a research tool that can help assess and understand network structure and engagement in the self-management support and could be developed into an intervention to support self-management. Patients' preferences to share illness experiences with their online peers, as well as the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of older people with chronic illnesses to understand whether their willingness to engage with online peers can change over time.

Influence of social networks on cancer survivors' self-management support: A mixed methods study.

OBJECTIVE: The role of social networks, especially weaker ties (e.g. casual acquaintances and hobby groups), in self-management of long-term consequences of cancer is unexplored. This study aimed to explore the structure of cancer survivors' social networks and their contribution to self-management support and health-related quality of life (HRQoL). METHODS: The study used a sequential, exploratory mixed methods design. Phase 1 surveyed 349 lymphoma, colorectal, breast and prostate cancer survivors. Phase 2 analysed 20 semi-structured interviews with respondents recruited from Phase 1. RESULTS: Phase 1 results suggested participants' HRQoL increased if they participated in an exercise group, if their self-management skills increased, and social distress and negative illness perception decreased (p < 0.0005 adj. R2 = 0.631). These findings were explored in Phase 2, identifying underlying mechanisms. Four themes were identified: disrupted networks after cancer treatment; navigating formal support and building individual capacity; peer networks and self-management knowledge and linking networks to enable adaptation in recovery. CONCLUSIONS: This study suggests engagement with community groups, particularly those not directly related to illness management and social interaction with weak ties, make a valuable contribution to self-management support, increase HRQoL and enhance well-being.

Assessing the effectiveness of social network interventions for adults with a diagnosis of mental health problems: a systematic review and narrative synthesis of impact.

BACKGROUND: Social connections have been linked to the genesis and amelioration of mental health problems and thus have potential therapeutic value. PURPOSE: To identify the current evidence base, assess risk of bias and synthesise findings on the effectiveness of social network interventions for people with mental health problems. METHODS: Electronic databases (MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Library, Web of Science, Scopus) and grey literature databases were systematically searched from inception to October 2021 using free text syntax combining synonyms for 'mental health problems' and 'social network interventions'. Articles were eligible for inclusion if they reported data from randomised controlled trials on the effectiveness of interventions designed to improve social networks for adults (18+) with mental health problems. Papers were independently reviewed for inclusion with conflicts resolved through consensus. Included papers were quality assessed and data extracted and synthesized narratively. Risk of bias was assessed using the Cochrane Risk of Bias Tool. RESULTS: Nine studies randomising 2226 participants were included. Four focused on those with a diagnosis of schizophrenia or psychosis, one on major depressive disorder and four included all types of mental health diagnoses. The current evidence base is of unclear quality. However, interventions which focused on supporting social activities appear to hold the most promise for enhancing social networks. Data on cost-effectiveness and research acceptability were limited, but suggest the potential economic feasibility of and acceptability for evaluating these interventions. CONCLUSION: There is emerging evidence that social network interventions can be effective in improving social connections for people with mental health problems. However, further evaluations with robust methodological approaches are required to inform evidence-based recommendations for health services.

Rural influences on the social network dynamics of district nursing services: A qualitative meta-synthesis.

BACKGROUND AND AIMS: As demands on healthcare services grow, fiscal restrictions place increased emphasis on services outside of traditional healthcare settings. Previous research into long-term-conditions suggests that social network members (including weaker ties such as acquaintances, community groups, and healthcare professionals) play a key role in illness management. There is limited knowledge about the engagement of social networks in supporting people who are receiving medical interventions at home. This qualitative metasynthesis explores the work and the interactions between district nurses (DN) and informal network members supporting people who are receiving medical interventions at home and living in rural areas. METHODS: A search was undertaken on CINAHL, Medline, and PsychINFO for qualitative research articles from 2009 to 2019. Studies that examined DN in rural locations and/or social network support in rural locations were eligible. Fourteen articles were selected. RESULTS: Thematic analysis of results and discussion data from the studies resulted in four themes being developed: the development of both transactional and friend-like nurse-patient ties in rural localities, engagement of the wider network in the delivery of good care, blurring of professional boundaries in close community relationships, and issues accessing and navigating formal and informal support in the context of diminishing resources in rural areas.These findings suggest that DNs in rural localities work beyond professional specialties and experience to provide emotional support, help with daily tasks, and build links to communities. There was also evidence that nurses embedded within rural localities developed friend-like relationships with patients, and negotiated with existing support networks and communities to find support for the patient. CONCLUSIONS: Findings indicated that developing strong links with patients and members of their networks does not automatically translate into positive outcomes for patients, and can be unsustainable, burdensome, and disruptive. DNs developing weak ties with patients and building awareness of the structure of individual networks and local sources of support offers avenues for sustainable and tailored community-based nursing support.

A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study.

BACKGROUND: Primary care providers are well positioned to foster self-management through linking patients to community-based health and social services (HSSs). This study evaluated a web-based tool-GENIE (Generating Engagement in Network Involvement)-to support the self-management of adults. GENIE empowers patients to leverage their personal social networks and increase their access to HSSs. GENIE maps patients' personal social networks, elicits preferences, and filters local HSSs from a community service directory based on patient's interests. Trained volunteers (an extension of the primary care team) conducted home visits and conducted surveys related to life and health goals in the context of the Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) program, in which the GENIE tool was implemented. GENIE reports were uploaded to an electronic medical record for care planning by the team. OBJECTIVE: This study aims to explore patients', volunteers', and clinicians' perceptions of the feasibility, usability, and perceived outcomes of GENIE-a tool for community-dwelling adults who are high users of the health care system. METHODS: This study involved 2 primary care clinician focus groups and 1 clinician interview (n=15), 1 volunteer focus group (n=3), patient telephone interviews (n=8), field observations that captured goal-action sequences to complete GENIE, and GENIE utilization statistics. The patients were enrolled in a primary care program-Health TAPESTRY-and Ontario's Health Links Program, which coordinates care for the highest users of the health care system. NVivo 11 (QSR International) was used to support qualitative data analyses related to feasibility and perceived outcomes, and descriptive statistics were used for quantitative data. RESULTS: Most participants reported positive overall perceptions of GENIE. However, feasibility testing showed that participants had a partial understanding of the tool; volunteer facilitation was critical to support the implementation of GENIE; clinicians perceived their navigation ability as superior to that of GENIE supported by volunteers; and tool completion took 39 minutes, which made the home visit too long for some. Usability challenges included difficulties completing some sections of the tool related to medical terminology and unclear instructions, limitations in the quality and quantity of HSSs results, and minor technological challenges. Almost all patients identified a community program or activity of interest. Half of the patients (4/8, 50%) followed up on HSSs and added new members to their network, whereas 1 participant lost a member. Clinicians' strengthened their understanding of patients' personal social networks and needs, and patients felt less social isolation. CONCLUSIONS: This study demonstrated the potential of GENIE, when supported by volunteers, to expand patients' social networks and link them to relevant HSSs. Volunteers require training to implement GENIE for self-management support, which may help overcome the time limitations faced by primary care clinicians. Refining the filtering capability of GENIE to address adults' needs may improve primary care providers' confidence in using such tools.

Resources in women's social networks for food shopping are more strongly associated with better dietary quality than people: A cross-sectional study.

When healthy people are part of an individual's social network, those individuals will have better dietary quality. Little, however, is known about whether social networks for food shopping, including both people and resources (e.g. recipes, weight loss programmes and food advertisements) are associated with dietary quality. The aim of this study was to explore the relationship between social networks for food shopping and dietary quality, and whether this differs for people and resources, among women aged 18-45 years. A total of 129 participants completed a cross-sectional questionnaire including an ego-centric Social Network Exposure tool and short Food Frequency Questionnaire. Associations between dietary quality and type of network member, perceived healthiness and support for healthy shopping choices were explored using linear regression models. Analyses revealed that participants who nominated people in their food shopping social network that eat healthily or support healthy food shopping had better dietary quality (ß = 0.16 SD per 1-point change on a 4-point scale, 95%CI -0.06, 0.39; ß = 0.20, 95%CI -0.07, 0.46, respectively). Resources in participants' food shopping social networks which promote healthy eating or support healthy shopping were associated with better dietary quality. These associations remained robust after adjustment for confounding variables identified using a directed acyclic graph (ß = 0.31 SD per 1-point change on a 4-point scale, 95%CI 0.03, 0.58; ß = 0.44, 95%CI 0.09, 0.79 respectively). The results were strengthened when the outcome was multiplied by frequency of contact (ß = 0.33, 95%CI 0.05, 0.61; ß = 0.47, 95%CI 0.11, 0.83 respectively). This study suggests that resources which promote healthy eating and healthy food shopping have a stronger association with dietary quality than social support from people. Further research is required in a larger sample, including multiple time-points, to confirm these findings.

Integrating a Web-Based Self-Management Tool (Managing Joint Pain on the Web and Through Resources) for People With Osteoarthritis-Related Joint Pain With a Web-Based Social Network Support Tool (Generating Engagement in Network Involvement): Design, Development, and Early Evaluation.

BACKGROUND: Joint pain caused by osteoarthritis (OA) is highly prevalent and can be extremely debilitating. Programs to support self-management of joint pain can be effective; however, most programs are designed to build self-efficacy and rarely engage social networks. Digital interventions are considered acceptable by people with joint pain. However, many existing resources are not accessible for or developed alongside people with lower health literacy, which disproportionately affects people with OA. OBJECTIVE: This study aims to design and develop an accessible digital self-management tool for people with joint pain and integrate this with an existing social network activation tool (Generating Engagement in Network Involvement [GENIE]) and to explore the feasibility of these linked tools for supporting the management of joint pain. METHODS: The study was conducted in 2 phases: a design and development stage and a small-scale evaluation. The first phase followed the person-based approach to establish guiding principles for the development of a new site (Managing joint Pain On the Web and through Resources [EMPOWER]) and its integration with GENIE. People with joint pain were recruited from libraries, a community café, and an exercise scheme to take part in 3 focus groups. EMPOWER was tested and refined using think-aloud interviews (n=6). In the second phase, participants were recruited through the web via libraries to participate in a small-scale evaluation using the LifeGuide platform to record use over a 1-month period. Participants (n=6) were asked to complete evaluation questionnaires on their experiences. The NASSS (nonadoption, abandonment, scale-up, spread, and sustainability) framework was used to explore the feasibility of the sites. RESULTS: The focus groups established guiding principles for the development of the tool. These included ensuring accessibility and relevance for people with OA-related joint pain and recognizing that joint pain is the reason for seeking support, trust, social facilitation, and goal setting. Think-aloud interviews identified issues with user experience and site navigation and the need for professional input for referral and goal setting, confusion, and tensions over the role of GENIE and site connectivity. Participants expected the sites to be specific to their pain-related needs. EMPOWER was accessed 18 times; 6 users registered with the site during the evaluation study. Participants mostly explored information pages on being active and being a healthy weight. Only one participant undertook goal setting and 4 participants visited the GENIE website. CONCLUSIONS: Using the NASSS framework, we identified the complexity associated with integrating EMPOWER and GENIE. The value proposition domain highlighted the technical and conceptual complexity associated with integrating approaches. Although identified as theoretically achievable, the integration of differing propositions may have caused cognitive and practical burdens for users. Nevertheless, we believe that both approaches have a distinct role in the self-management of joint pain.

Findings from a pilot randomised trial of a social network self-management intervention in COPD.

BACKGROUND: Self-Management Support (SMS), refers to the actions taken by individuals to recognise and manage their own health. It is increasingly recognised that individuals with chronic obstructive pulmonary disease (COPD) require additional support with their Self-management. Emerging evidence suggests that the use of a social network intervention can improve health outcomes and increase quality of life. In order to understand the potential benefits of SMS in COPD, the GENIE (Generating Engagement in Network Support) SMS tool was implemented and evaluated in a COPD primary care context. The GENIE intervention is a social networking tool that consists of 3 parts; a concentric circle modelling to map existing social networks; a questions sections to elicit preferences for activities; a map of selected resources is then produced, aligned with the user's interests and suggestions for connections to existing network members and to new resources. METHODS: A pilot, parallel, single blind, block randomised controlled trial. Patients with COPD ranging from mild-very severe were recruited. Participants provided written consent and were then randomised to either the intervention or usual care. The primary aim was to understand the clinical benefit through the analysis of health status, symptom burden and quality of life. The secondary outcome measure was health utilisation. NHS cost differences were reported between groups using the GENIE intervention over usual care. RESULTS: The GENIE pilot results demonstrate maintenance in health status and clinical symptoms with a decrease in anxiety. An overall increase in quality of life was observed, these findings did not reach significance. A cost reduction was demonstrated in inpatient stay with no difference in primary care costs. Overall a cost reduction in NHS service utilisation was indicated in the intervention group. CONCLUSION: This pilot study indicated that using a social network intervention can encourage the development of new social connections and extend existing support networks for COPD patients. Increasing network support in this population is of benefit to both patients and NHS providers in terms of cost reductions and enhancing wellbeing. This broadens the understanding of possible new approaches to SMS in community COPD patients, which could now be investigated in a larger population over a longer period. TRIAL REGISTRATION: Clinical Trials.gov PRS National Library of Medicine. Protocol ID number: 19175, Clinical Trial ID: NCT02935452.

Mediating engagement in a social network intervention for people living with a long-term condition: A qualitative study of the role of facilitation.

BACKGROUND: Successful facilitation of patient-centred interventions for self-management support has traditionally focussed on individual behaviour change. A social network approach to self-management support implicates the need for facilitation that includes an orientation to connecting to and mobilizing support and resources from other people and the local environment. OBJECTIVE: To identify the facilitation processes through which engagement with a social network approach to self-management is achieved. METHOD: Thematic analysis was used to analyse data from a longitudinal study design using quasi-ethnographic methods comprising non-participant observation, video and qualitative interviews involving 30 participants living with a long-term condition recruited from a marginalized community. RESULTS: Findings centred on three themes about the social network approach facilitation processes: reversing the focus on the self by bringing others into view; visualization and reflection as a mediator of positive disruption and linking to new connections; personalized matching of valued activities as a means of realizing preference elicitation. DISCUSSION AND CONCLUSIONS: Engagement processes with a social network approach illuminated the relevance of cognizance of an individual's immediate social context and forefronting social participation with others as the bases of self-management support of a long-term condition. This differs from traditional guided facilitation of health behaviour interventions that frame health as a matter of personal choice and individual responsibility.

Findings from an exploration of a social network intervention to promote diet quality and health behaviours in older adults with COPD: a feasibility study.

BACKGROUND: Diet quality in older people with chronic obstructive pulmonary disease (COPD) is associated with better health and lung function. Social factors, such as social support, social networks and participation in activities, have been linked with diet quality in older age. A social network tool-GENIE (Generating Engagement in Network Involvement)-was implemented in a COPD community care context. The study aimed to assess the feasibility of the GENIE intervention to promote diet quality and other health behaviours in COPD. METHODS: Twenty-two community-dwelling older adults with COPD were recruited from a local COPD service. Participants were offered usual care or the GENIE intervention. Process evaluation methods were used to assess intervention implementation, context and mechanisms of impact; these included observations of patient interactions with the intervention, documented in observational field notes and in films of a patient group discussion. Diet quality was assessed by food frequency questionnaire; 'prudent' diet scores were used to describe diet quality at baseline and at 3-month follow-up. Change in diet quality was expressed per month, from baseline to follow-up. RESULTS: Feasibility data showed that the GENIE intervention could be implemented in this sample of community-living older people. The intervention was acceptable to clinicians and older people with COPD, especially for those with less severe disease, when facilitated appropriately and considering the levels of literacy of participants. There was no significant change in diet quality in the intervention group over the follow-up period (median change in prudent diet score per month (interquartile range (IQR), 0.03 (- 0.24-0.07)), whereas an overall fall in diet quality was observed in the control group (- 0.15 (- 0.24-0.03)). CONCLUSION: The process evaluation findings suggest that this intervention is feasible and acceptable to both patients and clinicians. Although the sample size achieved in this study was small, findings suggest that the intervention may have a protective effect against declines in diet quality, and other health behaviours, in an older COPD population. Findings from this feasibility study indicate that further evaluation of the GENIE intervention is warranted in a larger study, with a longer follow-up. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02935452. NIH U.S. National Library of Medicine. Registered 17 October 2016.

The work and relatedness of ties mediated online in supporting long-term condition self-management.

The 'care transition' is characterised by reduced state involvement in chronic illness management in response to socio-political movements aimed at meeting the challenges presented by an increased prevalence of chronic illness. Amongst these changes has been online communities' rising importance in everyday interactions and attention is being increasingly paid towards the ways online contacts might contribute to self-management. Whilst research has illuminated the relevance of personal networks in long-term condition management, it is relevant to extend this work to consider the place of ties mediated online in this bricolage of support, including better understanding the work drawn from them and the strategies involved in eliciting it. This study examined the work and relatedness of 30 participants, who used online communities. Participants were asked about the role of on and offline ties and ego network mapping was used to frame conversations about the nature of this support. The context of engagement followed three main themes. Participants drew from online communities in response to deficits in offline support, they used online ties to leverage support or action from offline ties and they used online ties to substitute offline support, with less intimate online ties.

Study protocol for 'The Project About Loneliness and Social networks (PALS)': a pragmatic, randomised trial comparing a facilitated social network intervention (Genie) with a wait-list control for lonely and socially isolated people.

INTRODUCTION: Loneliness and social isolation have been identified as significant public health concerns, but improving relationships and increasing social participation may improve health outcomes and quality of life. The aim of the Project About Loneliness and Social networks (PALS) study is to assess the effectiveness and cost-effectiveness of a guided social network intervention within a community setting among individuals experiencing loneliness and isolation and to understand implementation of Generating Engagement in Network Involvement (Genie) in the context of different organisations. METHODS AND ANALYSIS: The PALS trial will be a pragmatic, randomised controlled trial comparing participants receiving the Genie intervention to a wait-list control group. Eligible participants will be recruited from organisations working within a community setting: any adult identified as socially isolated or at-risk of loneliness and living in the community will be eligible. Genie will be delivered by trained facilitators recruited from community organisations. The primary outcome will be the difference in the SF-12 Mental Health composite scale score at 6-month follow-up between the intervention and control group using a mixed effects model (accounting for clustering within facilitators and organisation). Secondary outcomes will be loneliness, social isolation, well-being, physical health and engagement with new activities. The economic evaluation will use a cost-utility approach, and adopt a public sector perspective to include health-related resource use and costs incurred by other public services. Exploratory analysis will use a societal perspective, and explore broader measures of benefit (capability well-being). A qualitative process evaluation will explore organisational and environmental arrangements, as well as stakeholder and participant experiences of the study to understand the factors likely to influence future sustainability, implementation and scalability of using a social network intervention within this context. ETHICS AND DISSEMINATION: This study has received NHS ethical approval (REC reference: 18/SC/0245). The findings from PALS will be disseminated widely through peer-reviewed publications, conferences and workshops in collaboration with our community partners. TRIAL REGISTRATION NUMBER: ISRCTN19193075.

The role of collective efficacy in long-term condition management: A metasynthesis.

Social networks have been found to have a valuable role in supporting the management of long-term conditions. However, the focus on the quality and how well self-management interventions work focus on individualised behavioural outcomes such as self-efficacy and there is a need for understanding that focuses on the role of wider collective processes in self-management support. Collective efficacy presents a potentially useful candidate concept in the development and understanding of self-management support interventions. To date it has mainly been utilised in the context of organisations and neighbourhoods related to social phenomena such as community cohesion. Drawing on Bandura's original theorisation this meta-synthesis explores how studies of collective efficacy might illuminate collective elements operating within the personal communities of people with long-term conditions. A qualitative meta-synthesis was undertaken. Studies published between 1998 and 2018 that examined collective efficacy in relation to health and well-being using qualitative and mixed methods was eligible for inclusion. Timing of engagement with others, building trust in the group, and legitimising ongoing engagement with the group arised as central elements of collective efficacy. The two themes forming third order constructs were related to the presence of continuous interaction and ongoing relational work between members of the group. Collective efficacy can develop and be sustained over time in a range of situations where individuals may not have intense relationships with one another and have limited commitment and contact with one another. Extending this to the personal communities of people with long-term conditions it may be the case that collective efficacy enables a number of engagement opportunities which can be oriented towards assisting with support from networks over a sustained length of time. This may include negotiating acceptable connections to resources and activities which in turn may help change existing practice in ways that improve long-term condition management.