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Chronic illness can disrupt many aspects of life, including identity, social relationships, and anticipated life trajectories. Despite significant scholarship on chronic illness, we know less about the ways in which chronic illness impacts feelings of loneliness and how people with chronic illness deal with loneliness. Drawing on concepts of biographical disruption and liminality and data from walking and photo-elicitation interviews with 14 people, we aimed to explore how people with chronic illness experience loneliness in their everyday lives. Tracing how past and present illness experiences are implicated in the lived experience of loneliness and the strategies people use to manage loneliness, our findings illustrated that being caught in a liminal state where participants struggled to maintain and adapt to a new normality in life with chronic illness was a central thread woven throughout their experience of loneliness. Although participants drew on their personal agency and adopted strategies to account for, manage, and limit disruptions from chronic illness and loneliness, they found that their strategies were not completely effective or satisfactory. Chronic illness and loneliness continue to be largely considered as an individual's problem, limiting opportunities for people with chronic illness who experience loneliness to seek support and social connection. Our research highlighted that chronic illness and loneliness need to be acknowledged as both a personal and collective problem, with multi-level responses that involve individuals, communities, and society.
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INTRODUCTION: Reversing the upward trajectory of obesity requires responding by including the multiple influences on weight control. Research has focused on individual behaviours, overlooking the environments where individuals spend their lives and shape lifestyles. Thus, there is a need for lay understandings of the impact of environments as a cause and solution to obesity. This research aimed to understand the influence of environments on the adoption of health practices in adults with obesity and to identify lay strategies with which to address environmental barriers to behaviour change. METHODS: Nineteen adults with a history of obesity living in the United Kingdom were interviewed through video conferencing between May 2020 and March 2021. Semi-structured interviews and socio-demographic questionnaires were used, and data analysed through hermeneutic phenomenology informed reflexive thematic analysis. RESULTS: Three main themes were created: living with convenience and normalcy: the increased accessibility of unhealthy food, people interacting with digital media for positive practice change, and the need to prioritise prevention in schools, the National Health Service and the food industry. CONCLUSIONS: The food environment was the major barrier, while interactions with social media was the most important opportunity to adopt healthy practices. The National Health Service was considered an obesogenic environment, something relevant since it has been traditionally recognised as an obesity management system. The perceptions from individuals with a history of obesity provide new suggestions on the influence of previously overlooked environments to design more adequate and effective interventions and policies that consider, more than in the past, the environments where people spend their lives.
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Obesidad , Humanos , Obesidad/psicología , Masculino , Femenino , Adulto , Persona de Mediana Edad , Reino Unido , Anciano , Ambiente , Medios de Comunicación Sociales , Encuestas y Cuestionarios , Estilo de Vida , Conductas Relacionadas con la SaludRESUMEN
Loneliness is one of the most pressing and rapidly growing contemporary social challenges around the world. Yet we still lack a good understanding of how loneliness is constituted and experienced by those most affected. We conducted semi-structured interviews with 40 people with chronic illness who were experiencing loneliness to explore what loneliness means to them and how it impacts in their daily lives. Drawing on ideas around liquidity and performativity, we identified the relational, temporal and social layers of loneliness. Our analysis revealed the interconnectedness of chronic illness and loneliness in participants' daily lives, as well as how chronic illness shifts temporal orientation, and transforms interpersonal relationships and relationship with self, contributing to the experiences of loneliness. Though participants described the many social conditions that restricted their opportunities for social participation, giving them a sense of being left behind and spectating the social life of others, a rhetoric of loneliness as a problem and responsibility of the individual was still prominent. A narrative of the need to perform social connection emerged in the absence of meaningful social bonds with others. We argue that normative ideals of wellness and positivity circulating in chronic illness communities and society more broadly are implicated in the experience of loneliness for people with chronic conditions. We conclude by considering how more expansive representations of how to live well with chronic illness may be important in reducing personal and collective loneliness.
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Relaciones Interpersonales , Soledad , Humanos , Investigación Cualitativa , Conducta Social , Participación SocialRESUMEN
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.
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Salud Mental , Red Social , Adulto , Humanos , Aislamiento SocialRESUMEN
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.
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Cuidadores , Servicios de Salud Mental , Cuidadores/psicología , Personal de Salud/psicología , Humanos , Red Social , Reino UnidoRESUMEN
BACKGROUND: Obesity in adults is a leading health challenge that causes millions of deaths worldwide and represents a risk factor for developing long-term conditions. Social relationships are one of the multiple drivers shaping obesity and obesity-related practices. However, there is still little evidence as to the processes by which relationships influence the adoption of positive and negative obesity health-related practices-eating, physical activity and alcohol intake. This study aims first to identify the types of relationships relevant to the adoption of practices in adults with obesity and, second, to explore the type of activities these relationships engage with or promote to produce those practices and their potential health consequences. METHODS: Nineteen adults who have or had a history of obesity living in the United Kingdom were interviewed between May 2020 and March 2021. Experiences were explored through semi-structured interviews and network mapping via videoconferencing. Data were analysed using a hermeneutic phenomenology informed thematic analysis. RESULTS: Three main themes were identified: (1) everyday familial routines matter, (2) chasing healthier lifestyles: comparing, modelling and connecting emotionally with friends and (3) healthcare professionals as negative influencers. DISCUSSION AND CONCLUSIONS: Findings show how different types of relationships might shape the risk of developing and losing weight. They uncover the power of informal networks (family and friends) and highlight the potentially negative impact of formal ones (healthcare professionals). Our exploration could add to arguments about the need for stakeholders confronting obesity to be aware of the relevance of everyday social relationships in health and well-being strategies for tackling the issue, in creating collective and individual person-centred long-term sustainable actions. PATIENT AND PUBLIC CONTRIBUTION: Feedback on the tone/content of the interview questions was provided by the two first participants. The results were checked and received feedback from one of the interviewees.
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Relaciones Interpersonales , Obesidad , Adulto , Ejercicio Físico/psicología , Amigos/psicología , Conductas Relacionadas con la Salud , Personal de Salud/psicología , Humanos , Obesidad/psicología , Investigación Cualitativa , Reino UnidoRESUMEN
Community environments have the potential to alleviate loneliness and social isolation as they offer opportunity for sociality and to expand personal social network connections. Implementing a social network intervention in community environments to connect people to who are at risk of loneliness or social isolation could help alleviate these concerns. However, implementing interventions in community environments is made difficult by the interplay between the community context and intervention. Thus, to support implementation a detailed understanding of the types of community contexts is required. To examine the optimal factors that promote the implementation of a social network designed to alleviate loneliness and social isolation intervention in the community observations, interviews and documentary analysis were conducted. The Consolidated Framework for Implementation Research and a typology of community contexts were used to inform the data analysis and interpret the findings. Key factors were found to affect the implementation of the intervention in the different community contexts. These inter-related factors operated across three domains. Service User Needs affected intervention take up as its suitability varied. The stability of the workforce and nature of everyday work also impacted on implementation. Finally, the fluctuating capacity of organisations and the organisational culture were also influential. No single community environment was found to have all of the optimal factors required for implementation and sustainably. The UK policy agenda of austerity had negatively affected community environments' capacity to deliver such intervention through increasing service user needs and reducing available resources. Trial registration: ISRCTN19193075.
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Soledad , Aislamiento Social , Humanos , Medio SocialRESUMEN
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.
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Trastorno Depresivo Mayor , Trastornos Psicóticos , Adulto , Humanos , Salud Mental , Narración , Red SocialRESUMEN
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.
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Enfermedad Pulmonar Obstructiva Crónica , Autocuidado , Antropología Cultural , Humanos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Investigación Cualitativa , Red Social , Participación SocialRESUMEN
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.
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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.
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Dieta , Abastecimiento de Alimentos , Estudios Transversales , Femenino , Alimentos , Humanos , Red SocialRESUMEN
OBJECTIVES: Health professional-led group programmes are a common form of long-term condition self-management support. Much research has focused on clinical outcomes of group participation, yet there is limited research on how group participants perceive and experience the support they receive. We aim to identify the different types of support that participants receive from both facilitators and other participants, and how they value this support. METHODS: Semi-structured interviews were conducted with 20 participants taking part in a self-management group programme for a long-term condition (obesity, type 2 diabetes or chronic obstructive pulmonary disease). Data pertaining to support types were deductively identified through a social support framework prior to interpretive thematic analysis. RESULTS: Participants identified information and emotional support from both facilitators and other participants as complementary yet distinct. Facilitators' support came from professional training and other participants' support reflected the contextual, lived experience. Professional interactions were prioritised, constraining opportunities for participant-participant support to be received and exchanged. DISCUSSION: We identified a key gap in how self-management support is enacted in groups. Engaging participants to share experiential knowledge will make group support more relevant and mutually beneficial to participants living with a long-term condition.
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Diabetes Mellitus Tipo 2 , Automanejo , Diabetes Mellitus Tipo 2/terapia , Humanos , Investigación Cualitativa , Apoyo SocialRESUMEN
Self-management is a contemporary model of chronic condition care that places expectations on, and roles for, both patients and health professionals. Health professionals are expected to form partnerships with their patients, and patients are expected to be active participants in their own care. In these new roles, control and responsibility for self-management are shared between people with chronic conditions and their health professionals. We still have limited knowledge about how these new roles are enacted in self-management support. In this article, we examine how health professionals perceive the roles of patients and professionals in chronic condition self-management, drawing on Bourdieu's concepts of field, doxa and capital. In this qualitative study, 32 in-depth interviews were conducted with 11 health professionals in Sydney, Australia. Data were analysed thematically. Three themes were derived. First, there was incongruence between how participants characterised and enacted their roles. Second, participants compartmentalised clinical and non-clinical aspects of self-management support. Finally, the roles of health professionals entwined with emotions and judgements of patienthood revealed that the provision of self-management support was linked to a fit between individuals' cultural health capital and the expectations governing the field. We argue that 'taken for granted' assumptions about self-management and self-management support must be challenged to mitigate negative social representations and unrealistic expectations placed on patients and health professionals, particularly those patients with less capital, who are more marginalised within clinical interactions.
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Automanejo , Personal de Salud , Humanos , Percepción , Investigación Cualitativa , AutocuidadoRESUMEN
Background Ketamine and magnesium are antagonists of the N-methyl-d-aspartate receptor, and are valuable adjuvants for multimodal analgesia and opioid sparing. Data are limited regarding the opioid sparing efficacy of the combined intraoperative application of these agents in laparoscopic bariatric surgery. The objective of this study was to compare the postoperative opioid sparing properties of a single intraoperative dose of ketamine versus a combination of single doses of ketamine and magnesium after laparoscopic gastric sleeve resection in bariatric patients. Methods One hundred and twenty- six patients were randomly assigned to receive single boluses of ketamine alone 0.5 mg kg-1 IV (ketamine group); combined ketamine bolus of 0.5 mg kg-1 IV and magnesium 2 g IV (ketamine and magnesium group); or placebo. Opioid consumption at 24 h (in morphine equivalents); pain at rest; postoperative nausea and vomiting impact score; sedation scores; and trends of transcutaneous carbon-di-oxide values were analysed. Results The median (inter-quartile range [range]) morphine consumption at 24 h were 32 (24-47 [4.8-91]) mg in the ketamine group, 37 (18-53 [1-144]) mg in the ketamine and magnesium group, and 26 (21-36 [5-89]) mg in the control group and were not significantly different between the groups. There were no differences for all other outcomes examined. Conclusion Combined single intraoperative bolus doses of ketamine and magnesium did not result in postoperative opioid sparing after laparoscopic gastric sleeve resection.
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Ketamina , Laparoscopía , Analgésicos , Analgésicos Opioides , Método Doble Ciego , Gastrectomía/efectos adversos , Humanos , Magnesio , Morfina , Dolor Postoperatorio/tratamiento farmacológico , Dolor Postoperatorio/etiología , Dolor Postoperatorio/prevención & controlRESUMEN
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.
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BACKGROUND: Use of emergency department (ED) care globally seems to be increasing at a faster rate than population growth (Baker, House of Commons Library. Accident and Emergency Statistics, Demand, Performance, 2017). In the UK there has been a reported 16% rise in emergency admissions over the past 5 years. Estimates that between 11 and 40% of ED attendances are non-urgent, with 11% of patients being discharged from the ED without treatment (NHS Digital 2017), and a further 44% require no follow-up treatment (NHS Digital, Hospital Accident and Emergency Activity 2016-17, 2019) is cited as evidence that these patients did not require this level of care. The solution to not using the most appropriate point in the system has traditionally been seen as a knowledge problem, requiring, improved sign-posting and information to enable people to self-manage or use health care management for minor ailments. However research about help-seeking behaviour suggests that the problem may not be an informational one. A considerable literature points to help seeking as a social process influenced by a range of contingencies and contextual factors including the way in which lay people influence health care utilisation (Giebel et al. BMJ Open 9:1, 2019). Personal communities comprise a variety of active and significant social ties which have potential to influence individual capacity to seek help. Here we extend and unpack further influencing decisions about seeking formal health care with reference to how they are shaped and informed by and within personal social networks. METHODS: We undertook a personal network mapping and qualitative interview-based study to look at, problematize and understand attendance for non-urgent problems. We used network analysis and methods to map and characterise the personal communities of people seeking help from ED for minor ailments and semi-structured interviews with 40 people attending a single ED and associated GP hub providing equivalent care. Interviews were built around an ego network mapping activity and a topic guide structured to explore attender's narratives about why they had visited the ED. This ego network activity uses a diagram consisting of three concentric circles (Fiori et al. J Gerontol B-Psychol 62: 322-30, 2007), representing closest social network members (in the centre) and those at further distance. Participants were initially presented with one of these diagrams and asked to write names of people or resources that had played a role in their attendance and the interviewer probed the interviewee to discuss the actions, input and value of the people and services that supported the visit to the ED. RESULTS: We analysed number and type of network connections and undertook a thematic analysis to identify how imagined and actual network members and influences were implicated in ED attendance. The network maps created during the interviews were examined and a typology of networks was developed and used to distinguish different types of networks informed by our reading of the data, and a Network Typology Scoring Tool, a measure of frequency of contact and relationship type in networks. CONCLUSIONS: Our study suggests that faced with acute minor illness or injury people's networks narrow: they do not (and perhaps cannot) mobilise their imagined care network because the resources or connections may not be there or are difficult to engage. In addition we identified important system drivers of behaviour, notably that these patients are often directed to the ED by 'professional influencers' including health services staff.
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Servicio de Urgencia en Hospital/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Red Social , Adulto , Anciano , Anciano de 80 o más Años , Servicios de Salud Comunitaria/estadística & datos numéricos , Femenino , Conducta de Búsqueda de Ayuda , Humanos , Masculino , Persona de Mediana Edad , Narración , Investigación Cualitativa , Automanejo , Adulto JovenRESUMEN
[This corrects the article DOI: 10.2196/13980.].
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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.
Asunto(s)
Enfermedad Pulmonar Obstructiva Crónica/terapia , Automanejo/métodos , Red Social , Apoyo Social , Anciano , Anciano de 80 o más Años , Análisis Costo-Beneficio , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Calidad de Vida , Método Simple Ciego , Reino UnidoRESUMEN
BACKGROUND: Type 1 diabetes (T1D) requires intensive self-management (SM). An insulin pump is designed to better support personal T1D management, but at the same time, it exacerbates the complexity and requirements of SM. Research shows that people with diabetes are likely to benefit from navigating and connecting to local means of social support and resources through web-based interventions that offer flexible, innovative, and accessible SM. However, questions remain as to which behavior change mechanisms within such resources benefit patients most and how to foster engagement with and endorsement of SM interventions. OBJECTIVE: The aim of this study was to evaluate the perspectives and experiences of people with T1D using an insulin pump and specialist health care professionals (HCPs) and determine what behavior change characteristics and strategies are required to inform the optimization of an existing web-based social network (SN) intervention to support SM. METHODS: Focus groups with insulin pump users (n=19) and specialist HCPs (n=20) in 6 National Health Service (NHS) trusts across the south of England examined the barriers and enablers to incorporating and self-managing an insulin pump. An analysis was undertaken using the Behavior Change Wheel and Theoretical Domains Framework, followed by a taxonomy of behavior change techniques (BCTs) to identify the contents of and strategies for the implementation of a complex health intervention. RESULTS: A total of 4 themes represent the SM perspectives and experiences of stakeholders: (1) a desire for access to tailored and appropriate resources and information-the support and information required for successful SM are situational and contextual, and these vary according to time and life circumstances, and therefore, these need to be tailored and appropriate; (2) specific social support preferences-taking away isolation as well as providing shared learnings and practical tips, but limitations included the fear of judgment from others and self-pity from peers; (3) the environmental context, that is, capacity and knowledge of pump clinic HCPs-HCPs acknowledge the patient's need for holistic support but lack confidence in providing it; and (4) professional responsibility and associated risks and dangers, whereas HCPs are fearful of the consequences of promoting non-NHSSM support, and they question whether SM support fits into their role. BCTs were identified to address these issues. CONCLUSIONS: The use of behavioral theory and a validated implementation framework provided a comprehensive approach for systematically identifying barriers and enablers of self-managing T1D with an insulin pump. A web-based SN intervention appears to offer additional forms of SM support while complementing NHS services. However, for intervention implementation, HCPs' apprehensions about responsibility when signposting to non-NHS SM support would need to be addressed, and opportunistic features would need to be added, through which pump users could actively engage with other people living with T1D.
RESUMEN
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.