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BACKGROUND: The enlargement of the European Union since 2004 has led to an increase in the number of Eastern European migrants living in the UK. The health of this group is under-researched though some mixed evidence shows they are at higher risk of certain physical health conditions such as heart attacks, strokes, HIV and alcohol use and have poorer mental health. This is compounded by poor or insecure housing, low pay, isolation and prejudice. We aimed to understand the health needs and health service experiences of the Eastern European population in a town in Northern England. METHODS: Five semi structured one-to-one and small group interviews and five focus groups were conducted with 42 Eastern European participants between June and September 2014. The majority of participants were Polish and other participants were from Belarus, Hungary, Latvia, Russia, Slovakia and Ukraine. The data were analysed using thematic framework analysis. RESULTS: Key findings included a good understanding the UK health service structure and high registration and use of general practice/primary care services. However, overall, there were high levels of dissatisfaction, frustration and distrust in General Practitioners (GP). The majority of participants viewed the GP as unhelpful and dismissive; a barrier to secondary/acute care; reluctant to prescribe antibiotics; and that GPs too often advised them to take paracetamol (acetaminophen) and rest. CONCLUSIONS: Overwhelmingly participants had strong opinions about access to primary care and the role of the general practitioners. Although the design of the UK health service was well understood, participants were unhappy with the system of GP as gatekeeper and felt it inferior to the consumer-focused health systems in their country of origin. More work is needed to promote the importance of self-care, reduce antibiotic and medication use, and to increase trust in the GP.
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Atitude Frente a Saúde/etnologia , Clínicos Gerais , Medicina Estatal , Migrantes , Acetaminofen/uso terapêutico , Adolescente , Adulto , Antibacterianos/uso terapêutico , Europa Oriental/etnologia , Feminino , Grupos Focais , Serviços de Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Atenção Primária à Saúde , Pesquisa Qualitativa , Medicina Estatal/estatística & dados numéricos , Reino Unido , Adulto JovemRESUMO
BACKGROUND: Primary care professionals are presumed to play a central role in delivering long-term condition management. However the value of their contribution relative to other sources of support in the life worlds of patients has been less acknowledged. Here we explore the value of primary care professionals in people's personal communities of support for long-term condition management. METHODS: A mixed methods survey with nested qualitative study designed to identify relationships and social network member's (SNM) contributions to the support work of managing a long-term condition conducted in 2010 in the North West of England. Through engagement with a concentric circles diagram three hundred participants identified 2544 network members who contributed to illness management. RESULTS: The results demonstrated how primary care professionals are involved relative to others in ongoing self-care management. Primary care professionals constituted 15.5 % of overall network members involved in chronic illness work. Their contribution was identified as being related to illness specific work providing less in terms of emotional work than close family members or pets and little to everyday work. The qualitative accounts suggested that primary care professionals are valued mainly for access to medication and nurses for informational and monitoring activities. Overall primary care is perceived as providing less input in terms of extended self-management support than the current literature on policy and practice suggests. Thus primary care professionals can be described as providing 'minimally provided support'. This sense of a 'minimally' provided input reinforces limited expectations and value about what primary care professionals can provide in terms of support for long-term condition management. CONCLUSIONS: Primary care was perceived as having an essential but limited role in making a contribution to support work for long-term conditions. This coalesces with evidence of a restricted capacity of primary care to take on the work load of self-management support work. There is a need to prioritise exploring the means by which extended self-care support could be enhanced out-with primary care. Central to this is building a system capable of engaging network capacity to mobilise resources for self-management support from open settings and the broader community.
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Diabetes Mellitus/terapia , Cardiopatias/terapia , Papel do Profissional de Enfermagem , Papel do Médico , Médicos de Atenção Primária , Autocuidado , Apoio Social , Animais , Doença Crônica , Estudos Transversais , Gerenciamento Clínico , Inglaterra , Família , Amigos , Humanos , Modelos Lineares , Análise Multinível , Animais de Estimação , Enfermagem de Atenção Primária , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: There are approximately 2.7 million Muslims in the UK, constituting 4.8% of the population. It is estimated that 325,000 UK Muslims have diabetes. Whilst dietary practices of Muslims with diabetes have been explored, little work has described the beliefs and decisions to fast during Ramadan, whereby Muslims with diabetes refrain from eating, drinking and taking medication between sunrise and sunset. OBJECTIVE: To explore beliefs and experiences of fasting during Ramadan of Muslim respondents with diabetes and their perceptions of the role played by their general practitioner (GP) and/or practice nurse (PN) in supporting them. DESIGN: Qualitative study. SETTING: General practices and community groups located in Greater Manchester. PARTICIPANTS: 23 South Asian Muslims. METHODS: Semi-structured interviews were conducted as part of the Collaboration of Applied Health Research and Care (CLAHRC) programme, Greater Manchester. Respondents were recruited using random and purposive sampling techniques. Interviews were analysed thematically using a constant comparison approach. RESULTS: Thirteen respondents reported they fasted and altered diabetes medication and diet during Ramadan. The decision to fast was influenced by pressures from the family and the collective social aspect of fasting, and respondents made limited contact with primary care during fasting. CONCLUSION: Tensions exist between the respondent's personal desire to fast or not fast and their family's opinion on the matter, with a strong reluctance to disclose fasting to GP and/or PN. Future research needs to explore whether GPs or PNs feel competent enough to support patients who wish to fast.
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Diabetes Mellitus , Dieta , Jejum , Islamismo , Relações Médico-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Comunicação , Inglaterra , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Religião e MedicinaRESUMO
BACKGROUND: British South Asians have a higher incidence of diabetes and poorer health outcomes compared to the general UK population. Beliefs about diabetes are known to play an important role in self-management, yet little is known about the sociocultural context in shaping beliefs. This study aimed to explore the influence of sociocultural context on illness beliefs and diabetes self-management in British South Asians. METHODS: A mixed methods approach was used. 67 participants recruited using random and purposive sampling, completed a questionnaire measuring illness beliefs, fatalism, health outcomes and demographics; 37 participants completed a social network survey interview and semi-structured interviews. Results were analysed using SPSS and thematic analysis. RESULTS: Quantitative data found certain social network characteristics (emotional and illness work) were related to perceived concern, emotional distress and health outcomes (p < 0.05). After multivariate analysis, emotional work remained a significant predictor of perceived concern and emotional distress related to diabetes (p < 0.05). Analysis of the qualitative data suggest that fatalistic attitudes and beliefs influences self-management practices and alternative food 'therapies' are used which are often recommended by social networks. CONCLUSIONS: Diabetes-related illness beliefs and self-management appear to be shaped by the sociocultural context. Better understanding of the contextual determinants of behaviour could facilitate the development of culturally appropriate interventions to modify beliefs and support self-management in this population.
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Cultura , Diabetes Mellitus , Autocuidado/psicologia , Adulto , Povo Asiático/psicologia , Comparação Transcultural , Diabetes Mellitus/etnologia , Diabetes Mellitus/psicologia , Diabetes Mellitus/terapia , Etnicidade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Apoio Social , Inquéritos e Questionários , Reino Unido/epidemiologiaRESUMO
BACKGROUND: Self-management support interventions can improve health outcomes, but their impact is limited by the numbers of people able or willing to access them. Men's attendance at existing self-management support services appears suboptimal despite their increased risk of developing many of the most serious long term conditions. The aim of this review was to determine whether current self-management support interventions are acceptable and accessible to men with long term conditions, and explore what may act as facilitators and barriers to access of interventions and support activities. METHODS: A systematic search for qualitative research was undertaken on CINAHL, EMBASE, MEDLINE, PsycINFO and Social Science Citation Index, in July 2013. Reference lists of relevant articles were also examined. Studies that used a qualitative design to explore men's experiences of, or perceptions towards, self-management support for one or more long term condition were included. Studies which focused on experiences of living with a long term condition without consideration of self-management support were excluded. Thirty-eight studies met the inclusion criteria. A meta-ethnography approach was employed to synthesise the findings. RESULTS: Four constructs associated with men's experience of, and perceptions towards, self-management support were identified: 1) need for purpose; 2) trusted environments; 3) value of peers; and 4) becoming an expert. The synthesis showed that men may feel less comfortable participating in self-management support if it is viewed as incongruous with valued aspects of their identity, particularly when activities are perceived to challenge masculine ideals associated with independence, stoicism, and control. Men may find self-management support more attractive when it is perceived as action-oriented, having a clear purpose, and offering personally meaningful information and practical strategies that can be integrated into daily life. CONCLUSIONS: Self-management support is most likely to be successful in engaging men when it is congruent with key aspects of their masculine identity. In order to overcome barriers to access and fully engage with interventions, some men may need self-management support interventions to be delivered in an environment that offers a sense of shared understanding, connectedness, and normality, and involves and/or is facilitated by men with a shared illness experience.
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Doença Crônica/terapia , Saúde do Homem , Autocuidado/psicologia , Emoções , Identidade de Gênero , Humanos , Masculino , Grupo Associado , Percepção , Pesquisa Qualitativa , Apoio Social , ConfiançaRESUMO
BACKGROUND: Advocating the need to adopt more self-management policies has brought with it an increasing demand for information about living with and making decisions about long-term conditions, with a significant potential for using cartoons. However, the purposeful use of cartoons is notably absent in many areas of health care as is evidence of their acceptability to patients and lay others. This paper outlines the process used to develop and evaluate cartoons and their acceptability for a series of self-management guidebooks for people with inflammatory bowel disease, irritable bowel syndrome, diabetes, chronic obstructive pulmonary disease and chronic kidney disease (CKD). METHODS: Principles for a process to develop information and cartoons were developed. Cartoon topics were created using qualitative research methods to obtain lay views and experiences. The CKD guidebook was used to provide a detailed exemplar of the process. Focus group and trial participants were recruited from primary care CKD registers. The book was part of a trial intervention; selected participants evaluated the cartoons during in-depth interviews which incorporated think-aloud methods. RESULTS: In general, the cartoons developed by this process depict patient experiences, common situations, daily management dilemmas, making decisions and choices and the uncertainties associated with conditions. CKD cartoons were developed following two focus groups around the themes of getting a diagnosis; understanding the problem; feeling that facts were being withheld; and setting priorities. Think-aloud interviews with 27 trial participants found the CKD cartoons invoked amusement, recognition and reflection but were sometimes difficult to interpret. CONCLUSION: Humour is frequently utilised by people with long-term conditions to help adjustment and coping. Cartoons can help provide clarity and understanding and could address concerns related to health literacy. Using cartoons to engage and motivate people is a consideration untapped by conventional theories with the potential to improve information to support self-management.
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Desenhos Animados como Assunto , Doença Crônica/terapia , Educação de Pacientes como Assunto/métodos , Autocuidado/métodos , Idoso , Idoso de 80 Anos ou mais , Diabetes Mellitus/terapia , Feminino , Grupos Focais , Humanos , Doenças Inflamatórias Intestinais/terapia , Entrevistas como Assunto , Síndrome do Intestino Irritável/terapia , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/terapia , Insuficiência Renal Crônica/terapia , Senso de Humor e Humor como AssuntoRESUMO
BACKGROUND: Recent initiatives to target the personal, social and clinical needs of people with long-term health conditions have had limited impact within primary care. Evidence of the importance of social networks to support people with long-term conditions points to the need for self-management approaches which align personal circumstances with valued activities. The Patient-Led Assessment for Network Support (PLANS) intervention is a needs-led assessment for patients to prioritise their health and social needs and provide access to local community services and activities. Exploring the work and practices of patients and telephone workers are important for understanding and evaluating the workability and implementation of new interventions. METHODS: Qualitative methods (interviews, focus group, observations) were used to explore the experience of PLANS from the perspectives of participants and the telephone support workers who delivered it (as part of an RCT) and the reasons why the intervention worked or not. Normalisation Process Theory (NPT) was used as a sensitising tool to evaluate: the relevance of PLANS to patients (coherence); the processes of engagement (cognitive participation); the work done for PLANS to happen (collective action); the perceived benefits and costs of PLANS (reflexive monitoring). 20 patients in the intervention arm of a clinical trial were interviewed and their telephone support calls were recorded and a focus group with 3 telephone support workers was conducted. RESULTS: Analysis of the interviews, support calls and focus group identified three themes in relation to the delivery and experience of PLANS. These are: formulation of 'health' in the context of everyday life; trajectories and tipping points: disrupting everyday routines; precarious trust in networks. The relevance of these themes are considered using NPT constructs in terms of the work that is entailed in engaging with PLANS, taking action, and who is implicated this process. CONCLUSIONS: PLANS gives scope to align long-term condition management to everyday life priorities and valued aspects of life. This approach can improve engagement with health-relevant practices by situating them within everyday contexts. This has potential to increase utilisation of local resources with potential cost-saving benefits for the NHS. TRIAL REGISTRATION: ISRCTN45433299.
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Autocuidado , Grupos de Autoajuda , Telefone , Idoso , Feminino , Grupos Focais , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pesquisa Qualitativa , Insuficiência Renal Crônica/terapiaRESUMO
BACKGROUND: Improving the quality of care for patients with vascular disease is a priority. Clinical guidance has emphasised the importance of early identification and active management of chronic kidney disease (CKD) in primary care in order to maintain vascular health. However, awareness of stage 3 CKD amongst patients remains limited. We aimed to identify predictors of patient self-report of CKD to inform tailoring of conversations around CKD in primary care for diverse patient populations. METHODS: We conducted a cross-sectional analysis of baseline data from 436 patients with stage 3 CKD from 24 GP practices taking part in a randomised controlled trial (RCT) evaluating a complex self-management intervention, which aimed to support the maintenance of vascular health in patients with stage 3 CKD. Potential predictors of patient self-report of CKD included demographics, stage of CKD, cardiovascular risk, self-reported co-morbidities, health status, self-management ability, and health service utilisation. RESULTS: Around half (52%, n = 227) of patients did not self-report CKD. Self-report rates did not appreciably differ by practice. Multivariate analysis revealed that female patients (p = 0.004), and patients with stage 3b CKD (p < 0.001), and with higher anxiety levels (p < 0.001), were more likely to self-report CKD. CONCLUSIONS: Self-report of kidney problems by patients on CKD registers was variable and patterned by sociodemographic factors. Although it cannot be assumed that failure to self-report indicates a lack of awareness of CKD, our data do suggest the need for greater consistency in discussions around kidney health, with meaningful and relevant clinical dialogue that is aligned with existing clinical encounters to enable shared decision making and minimise anxiety.
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Ansiedade/epidemiologia , Doenças Cardiovasculares/epidemiologia , Medicina Geral , Serviços de Saúde/estatística & dados numéricos , Nível de Saúde , Insuficiência Renal Crônica/epidemiologia , Autocuidado , Autorrelato , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Estudos Transversais , Feminino , Humanos , Masculino , Análise Multivariada , Ensaios Clínicos Controlados Aleatórios como Assunto , Índice de Gravidade de Doença , Fatores SexuaisRESUMO
OBJECTIVE: To combine insights from service users with long-term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health-relevant resources. BACKGROUND: Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self-care support. METHOD: A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long-term condition management (LTCM) to develop a community referral tool. RESULTS: Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self-care. This helped to inform a tool (PLANS) to tailor access to types of community-based resources which can support LTCM. CONCLUSIONS: Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices.
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Doença Crônica/terapia , Serviços de Saúde Comunitária/organização & administração , Redes Comunitárias/organização & administração , Idoso , Doença Crônica/psicologia , Participação da Comunidade/métodos , Inglaterra , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Desenvolvimento de Programas/métodos , Autocuidado/métodos , Isolamento Social/psicologia , VoluntáriosRESUMO
BACKGROUND: Improved prevention and management of vascular disease is a global priority. Non-health care professionals (such as, 'lay health workers' and 'peer support workers') are increasingly being used to offer telephone support alongside that offered by conventional services, to reach disadvantaged populations and to provide more efficient delivery of care. However, questions remain over the impact of such interventions, particularly on a wider range of vascular related conditions (such as, chronic kidney disease), and it is unclear how different types of telephone support impact on outcome. This study assessed the evidence on the effectiveness and cost-effectiveness of telephone self-management interventions led by 'lay health workers' and 'peer support workers' for patients with vascular disease and long-term conditions associated with vascular disease. METHODS: Systematic review of randomised controlled trials. Three electronic databases were searched. Two authors independently extracted data according to the Cochrane risk of bias tool. Random effects meta-analysis was used to pool outcome measures. RESULTS: Ten studies were included, primarily based in community settings in the United States; with participants who had diabetes; and used 'peer support workers' that shared characteristics with patients. The included studies were generally rated at risk of bias, as many methodological criteria were rated as 'unclear' because of a lack of information.Overall, peer telephone support was associated with small but significant improvements in self-management behaviour (SMD = 0.19, 95% CI 0.05 to 0.33, I2 = 20.4%) and significant reductions in HbA1c level (SMD = -0.26, 95% CI -0.41 to -0.11, I2 = 47.6%). There was no significant effect on mental health quality of life (SMD = 0.03, 95% CI -0.12 to 0.18, I2 = 0%). Data on health care utilisation were very limited and no studies reported cost effectiveness analyses. CONCLUSIONS: Positive effects were found for telephone self-management interventions via 'lay workers' and 'peer support workers' for patients on diabetes control and self-management outcomes, but the overall evidence base was limited in scope and quality. Well designed trials assessing non-healthcare professional delivered telephone support for the prevention and management of vascular disease are needed to identify the content of effective components on health outcomes, and to assess cost effectiveness, to determine if such interventions are potentially useful alternatives to professionally delivered care.
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Autocuidado/métodos , Doenças Vasculares/terapia , Serviços de Saúde Comunitária/métodos , Análise Custo-Benefício , Humanos , Grupo Associado , Autocuidado/economia , Telefone , Resultado do Tratamento , Doenças Vasculares/prevenção & controleRESUMO
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.
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Solidão/psicologia , Isolamento Social/psicologia , Rede Social , Participação Social , Apoio Social , Análise Custo-Benefício , Promoção da Saúde , Nível de Saúde , Saúde Mental , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida , Reino Unido , Listas de EsperaRESUMO
BACKGROUND: Diabetes is disproportionately high among British South Asians compared to the general UK population. Whilst the migrant British South Asians group has received most attention on research related to diabetes management, little consideration has been given to impact of travel back to the East. This study aimed to explore the role of social networks and beliefs about diabetes in British South Asians, to better understand their management behaviours whilst holidaying in the East. METHODS: Semistructured interviews were conducted in Greater Manchester. Forty-four participants were recruited using random and purposive sampling techniques. Interviews were analysed thematically using a constant comparison approach. RESULTS: Migrant British South Asians expressed a strong preference to be in a hot climate; they felt they had a healthier lifestyle in the East and often altered or abandoned their diabetes medication. Information acquisition on diabetes and availability of social networks in the East was valued. CONCLUSION: Social networks in the East are a valued source of information and support for diabetes. The lack of adherence to medication whilst abroad suggests that some migrant British South Asians have a poor understanding of diabetes. Future research needs to explore whether patients are seeking professional advice on diabetes management prior to their extended holiday.
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Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 2/tratamento farmacológico , Conhecimentos, Atitudes e Prática em Saúde , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Povo Asiático , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 2/psicologia , Inglaterra , Feminino , Férias e Feriados , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
The prevalence of people living with long-term conditions is increasing, accompanied by an increased expectation that patients will become more involved in self-management. Long-term conditions are associated with increased social isolation and poor physical and mental health. But there remains a gap in health provision between providing medical treatment and effectively addressing psychosocial well-being. One potential way of addressing this gap is by utilising social interventions which link patients from health services to community-based sources of support. However, the mechanisms involved in the delivery of interventions providing that link and their effectiveness remain unclear. This review adopted the methodological framework for conducting scoping studies, searching for both academic and grey literature on social interventions which link people from healthcare settings to a range of community and voluntary sector organisations. A literature search between May and June 2013, involving five electronic databases, hand searching of two journals and the use of Google search engine, identified seven studies relevant to the review question. In terms of key characteristics and mechanisms of the interventions, mental health conditions and social isolation were the most common reasons for referral to the interventions, and referrals were usually made through general practices. Almost all the interventions were facilitator-led, whereby the facilitator worked to identify and link participants to appropriate community-based resources. In regard to health and social outcomes and their cost-effectiveness, studies reported improvement to participants' psychological and social well-being as well as their decreased use of health services, although there were limited measures of participants' physical health outcomes. Interventions for linking patients from healthcare setting to community-based resources target and address psychosocial needs of participants. The review identified involvement of health professionals in aiding the referral of patients to the intervention and the role of the intervention facilitators as key components of the interventions.
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Doença Crônica/psicologia , Pessoal de Saúde/psicologia , Saúde Mental , Apoio Social , Seguridade Social , Humanos , Atenção Primária à Saúde , AutocuidadoRESUMO
Voluntary and community organisations (VCOs) have health benefits for those who attend and are viewed as having the potential to support long-term condition management. However, existing community-level understandings of participation do not explain the involvement with VCOs at an individual level, or the nature of support, which may elicit health benefits. Framing active participation as 'doing and experiencing', the aim of this qualitative study was to explore why people with long-term vascular conditions join VCOs, maintain their membership and what prevents participation. Twenty participants, self-diagnosed as having diabetes, chronic heart disease or chronic kidney disease, were purposefully sampled and recruited from a range of VCOs in the North West of England identified from a mapping of local organisations. In semi-structured interviews, we explored the nature of their participation. Analysis was thematic and iterative involving a continual reflection on the data. People gave various reasons for joining groups. These included health and well-being, the need for social contact and pursuing a particular hobby. Barriers to participation included temporal and spatial barriers and those associated with group dynamics. Members maintained their membership on the basis of an identity and sense of belonging to the group, developing close relationships within it and the availability of support and trust. Participants joined community groups often in response to a health-related event. Our findings demonstrate the ways in which the social contact associated with continued participation in VCOs is seen as helping with long-term condition management. Interventions designed at improving chronic illness management might usefully consider the role of VCOs.
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Doença Crônica/terapia , Redes Comunitárias , Autocuidado/psicologia , Apoio Social , Instituições Filantrópicas de Saúde , Idoso , Idoso de 80 Anos ou mais , Diabetes Mellitus/terapia , Feminino , Cardiopatias/terapia , Humanos , Entrevistas como Assunto , Nefropatias/terapia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino UnidoRESUMO
Early detection of long term conditions is predicated on assumptions that lifestyle changes and medications can be used to reduce or manage the risk of condition progression. However, ambiguity remains about the nature and place of diagnostic disclosure to people in newly recognised or asymptomatic 'pre' conditions such as early stage chronic kidney disease (CKD). The disclosure of a diagnosis is relevant to instigating strategies which rely on actively engaging patients as self-managers of their own care. Whilst primary care routinely records a diagnosis of early stage CKD, little is known about how patients learn about the fact that they have CKD or how they respond to this. This study aimed to explore patients' experiences of disclosure of CKD in primary care settings. A nested qualitative study of participants recruited to a trial of an intervention for CKD patients in Greater Manchester, UK was undertaken. A purposive sample of 26 patients, with a mean age of 72 years (range 59-89, median 71), were interviewed during 2012. Interview transcripts were analysed using constant comparative techniques. Narrative accounts reflected limited or partial disclosure of CKD; often cast in vague terms as "nothing to worry about". How patients described themselves in terms of participation and their tendencies towards 'active' or 'passive' involvement in consultations emerged as important components of narratives around disclosure. The findings illuminate the ways in which diagnosis is oriented in a context where it is possible to meet the requirements for remuneration under a pay for performance system of primary care, whilst apparently not disclosing a label or a diagnosis to patients. This challenges the presumptions inherent in wider health policy objectives that are increasingly built on the notion of responsible patients and the ethos of the active support of self-management for pre-conditions.
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Revelação , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Atenção Primária à Saúde , Autocuidado/psicologia , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Conscientização , Negação em Psicologia , Inglaterra , Feminino , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/economia , Estilo de Vida , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde/economia , Pesquisa Qualitativa , Reembolso de Incentivo/economia , Remuneração , Autocuidado/economiaRESUMO
OBJECTIVES: To examine the role of community groups to support people living with long-term conditions and the organisational factors that influence this role. METHODS: Thirty-three semi-structured interviews were conducted with voluntary group organisers purposefully sampled in Greater Manchester from a local database of community groups. Interviews explored the organisations role in supporting people living with a long-term condition, their social networks and the origins of the groups. RESULTS: Respondents' construed their role in supporting individual capacity for management either explicitly (e.g. providing exercise) or implicitly (e.g. emotional support). This role was influenced by a combination of group ideology, funding and social networks. Analysis highlights the role of the non-clinical setting, the social support provided within the group, as well as organisational processes that influenced their capacity to support people living with long-term conditions. CONCLUSION: By examining the organisation of voluntary groups, this study highlights the way in which they may support or constrain access to an extended range of support for people with long-term conditions. This paper has implications for commissioning of services by the health service from the third sector because of the differing ideological perspectives and limited operational capacity.
Assuntos
Doença Crônica/terapia , Redes Comunitárias/organização & administração , Autocuidado/métodos , Apoio Social , Instituições Filantrópicas de Saúde/organização & administração , Adulto , Doença Crônica/psicologia , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa QualitativaRESUMO
OBJECTIVES: To assess the effectiveness of self-management support interventions in men with long-term conditions. METHODS: A quantitative systematic review with meta-analysis. DATA SOURCES: The Cochrane Database of Systematic Reviews was searched to identify published reviews of self-management support interventions. Relevant reviews were screened to identify randomised controlled trials (RCTs) of self-management support interventions conducted in men alone, or which analysed the effects of interventions by sex. REVIEW METHODS: Data on relevant outcomes, patient populations, intervention type and study quality were extracted. Quality appraisal was conducted using the Cochrane Risk of Bias Tool. Meta-analysis was conducted to compare the effects of interventions in men, women, and mixed-sex sub-groups. RESULTS: 40 RCTs of self-management support interventions in men, and 20 eligible RCTs where an analysis by sex was reported, were included in the review. Meta-analysis suggested that physical activity, education, and peer support-based interventions have a positive impact on quality of life in men. However, there is currently insufficient evidence to make strong statements about whether self-management support interventions show larger, similar or smaller effects in men compared with women and mixed-sex groups. CONCLUSIONS: Clinicians may wish to consider whether certain types of self-management support (eg, physical activity, education, peer support) are particularly effective in men, although more research is needed to fully determine and explore this.
Assuntos
Doença Crônica/terapia , Exercício Físico , Saúde do Homem , Educação de Pacientes como Assunto , Qualidade de Vida , Autocuidado , Apoio Social , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The distribution of the roles and responsibilities of long-term condition management (LTCM) outside of formal health services implicates a wide set of relationships and activities of involvement. Yet, compared to studies of professional implementation, patient systems of implementation remain under-investigated. The aim of this paper is to explore the work, meaning and function attributed to 'weaker' ties relative to other more bonding relationships in order to identify the place of these within a context of systems of support for long-term conditions. METHODS: This is a mixed methods survey with nested qualitative study. A total of 300 people from deprived areas in the North West of England with chronic illnesses took part in a survey conducted in 2010 to 2011. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. Notions of 'work' were used to describe activities associated with chronic illness and to identify how weaker ties are included and perceived to be involved through social network members (SNM) contributions. RESULTS: The results provide an articulation of how SNMs are substantially involved in weak tie illness management. Weaker ties constituted 16.1% of network membership involved in illness work. The amount of work undertaken was similar but less than that of stronger ties. Weaker ties appeared more durable and less liable to loss over time than stronger ties. The qualitative accounts suggested that weak ties enabled the moral positioning of the self-managing 'self' and acted on the basis of a strong sense of reciprocity. CONCLUSIONS: Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
Assuntos
Doença Crônica/psicologia , Doença Crônica/terapia , Autocuidado/psicologia , Apoio Social , Animais , Estudos Transversais , Inglaterra , Pessoal de Saúde , Humanos , Animais de Estimação , Pesquisa Qualitativa , Grupos de AutoajudaRESUMO
UNLABELLED: Evidence for the effectiveness of patient education programmes in changing individual self-management behaviour is equivocal. More distal elements of personal social relationships and the availability of social capital at the community level may be key to the mobilisation of resources needed for long-term condition self-management to be effective. AIM: To determine how the social networks of people with long-term conditions (diabetes and heart disease) are associated with health-related outcomes and changes in outcomes over time. METHODS: Patients with chronic heart disease (CHD) or diabetes (nâ=â300) randomly selected from the disease registers of 19 GP practices in the North West of England. Data on personal social networks collected using a postal questionnaire, alongside face-to-face interviewing. Follow-up at 12 months via postal questionnaire using a self-report grid for network members identified at baseline. ANALYSIS: Multiple regression analysis of relationships between health status, self-management and health-economics outcomes, and characteristics of patients' social networks. RESULTS: Findings indicated that: (1) social involvement with a wider variety of people and groups supports personal self-management and physical and mental well-being; (2) support work undertaken by personal networks expands in accordance with health needs helping people to cope with their condition; (3) network support substitutes for formal care and can produce substantial saving in traditional health service utilisation costs. Health service costs were significantly (p<0.01) reduced for patients receiving greater levels of illness work through their networks. CONCLUSIONS: Support for self-management which achieves desirable policy outcomes should be construed less as an individualised set of actions and behaviour and more as a social network phenomenon. This study shows the need for a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long term illness management.
Assuntos
Nível de Saúde , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Inglaterra , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Autocuidado , Adulto JovemRESUMO
BACKGROUND: Traditional measures of social status are predicated on position in the labour market. There has been less attention directed to the meanings of social position for people with a long-term condition whose relationship to employment is precarious. Previous research has demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social status, which makes it a useful tool for exploring changes in meaning. AIMS: The paper explores the meanings and experiences of social status of people living with a long-term condition with particular reference to employment status. METHODS: A sample of 300 participants was drawn from diabetes and chronic heart disease registers of General Practices in North West England. A cross-sectional survey with nested qualitative interviews was used in collecting and analysing the data. FINDINGS: Having financial independence and participating in valued activities are more important for people with chronic illness than power and status mediated through the labour market. Income and the lack and loss of employment were given a central role in respondents' narratives reflecting the absence of acceptable alternative routes through which social status for those with a long-term condition can realistically be rebuilt outside of participation in the labour market. CONCLUSION: Social participation, where people with chronic illness feel valued and of tangible utility to other people, might offer some opportunities for rebuilding social status outside the labour market. Chronic illness management interventions need to focus on improving people's engagement with such activities.