Helen Brooks

Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities.

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances. This is relevant for understanding the division of labour and the meeting of needs for those living with a long-term condition. We therefore took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management. Whilst partners and close family make the highest contributions there is evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner. This indicates a degree of substitutability between differently constituted networks, and that the level and type of input by different members of a network might change according to circumstances. A network perspective offers an opportunity to redress the balance of an exclusively individual focus on self-management because it addresses the broader set of contributions and resources available to people in need of chronic illness management and support.

'Permission to participate?': a qualitative study of participation in patients from differing socio-economic backgrounds

Participation in health care is an important element of self-management in chronic illness, and policy emphasises patient’s choice. Evidence suggests that this may be inequitable and inadequate, since active participation is strongly associated with socio-demographic variables. This qualitative study explores the perceptions of participation in people with differing socio-economic status with themes related to health literacy and relationship with health-care professionals. Patients perceive participation in different ways, related to their prior expectations of a health-care consultation, cultural expectations and social position. Policies aimed at simply improving ‘health literacy’ and choice will not be successful if these broader disparities are not addressed.

Innovation in mental health services: what are the key components of success?

BackgroundService development innovation in health technology and practice is viewed as a pressing need within the field of mental health yet is relatively poorly understood. Macro-level theories have been criticised for their limited explanatory power and they may not be appropriate for understanding local and fine-grained uncertainties of services and barriers to the sustainability of change. This study aimed to identify contextual influences inhibiting or promoting the acceptance and integration of innovations in mental health services in both National Health Service (NHS) and community settings.MethodsA comparative study using qualitative and case study data collection methods, including semi-structured interviews with key stakeholders and follow-up telephone interviews over a one-year period. The analysis was informed by learning organisation theory. Drawn from 11 mental health innovation projects within community, voluntary and NHS settings, 65 participants were recruited including service users, commissioners, health and non-health professionals, managers, and caregivers. The methods deployed in this evaluation focused on process-outcome links within and between the 11 projects.ResultsKey barriers to innovation included resistance from corporate departments and middle management, complexity of the innovation, and the availability and access to resources on a prospective basis within the host organisation. The results informed the construction of a proposed model of innovation implementation within mental health services. The main components of which are context, process, and outcomes.ConclusionsThe study produced a model of conducive and impeding factors drawn from the composite picture of 11 innovative mental health projects, and this is discussed in light of relevant literature. The model provides a rich agenda to consider for services wanting to innovate or adopt innovations from elsewhere. The evaluation suggested the importance of studying innovation with a focus on context, process, and outcomes.

Linking people with long-term health conditions to healthy community activities: development of Patient-Led Assessment for Network Support (PLANS).

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.

Why less may be more: a mixed methods study of the work and relatedness of ‘weak ties’ in supporting long-term condition self-management

BackgroundThe 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.MethodsThis 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.ResultsThe 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.ConclusionsWeak 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.

Professional perspectives on service user and carer involvement in mental health care planning: A qualitative study

Background Involving users/carers in mental health care-planning is central to international policy initiatives yet users frequently report feeling excluded from the care planning process. Rigorous explorations of mental health professionals’ experiences of care planning are lacking, limiting our understanding of this important translational gap. Objectives To explore professional perceptions of delivering collaborative mental health care-planning and involving service users and carers in their care. Design Qualitative interviews and focus groups with data combined and subjected to framework analysis. Setting UK secondary care mental health services. Participants 51 multi-disciplinary professionals involved in care planning and recruited via study advertisements. Results Emergent themes identified care-planning as a meaningful platform for user/carer involvement but revealed philosophical tensions between user involvement and professional accountability. Professionals emphasised their individual, relational skills as a core facilitator of involvement, highlighting some important deficiencies in conventional staff training programmes. Conclusions Although internationally accepted on philosophical grounds, user-involved care-planning is poorly defined and lacks effective implementation support. Its full realisation demands greater recognition of both the historical and contemporary contexts in which statutory mental healthcare occurs.

Creature comforts: personal communities, pets and the work of managing a long-term condition.

Objectives: To explore in the context of peoples’ personal social networks, the contribution that pets make to ‘the work’ associated with the management of long-term conditions. Method: Mixed methods survey with nested parallel qualitative study; 300 participants were drawn from diabetes and chronic heart disease registers of General Practices across Greater Manchester in the North West of England. Notions of ‘work’ were used to describe the illness and everyday activities associated with chronic illness. Results: Nineteen percent of participants identified at least one pet within their network. Pets contributed mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). There were indicators that pets mediated relationships for people living with a long-term condition through very weak ties with others in domestic and community settings. Conclusion: The findings suggest that pets have unique qualities and are not simply substitutes for human relationships in long-term condition management. The study has potential implications for furthering a social contextual analysis of chronic illness, the understanding of relationships, and the meaning and the role of companion animals in long-term condition management.

Carers’ experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services

BackgroundFormal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.MethodsQualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.ResultsWhilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.ConclusionsThis qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.

Social status and living with a chronic illness: an exploration of assessment and meaning attributed to work and employment.

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.

Effect of information and telephone-guided access to community support for people with chronic kidney disease: Randomised controlled trial

Background Implementation of self-management support in traditional primary care settings has proved difficult, encouraging the development of alternative models which actively link to community resources. Chronic kidney disease (CKD) is a common condition usually diagnosed in the presence of other co-morbidities. This trial aimed to determine the effectiveness of an intervention to provide information and telephone-guided access to community support versus usual care for patients with stage 3 CKD. Methods and Findings In a pragmatic, two-arm, patient level randomised controlled trial 436 patients with a diagnosis of stage 3 CKD were recruited from 24 general practices in Greater Manchester. Patients were randomised to intervention (215) or usual care (221). Primary outcome measures were health related quality of life (EQ-5D health questionnaire), blood pressure control, and positive and active engagement in life (heiQ) at 6 months. At 6 months, mean health related quality of life was significantly higher for the intervention group (adjusted mean difference = 0.05; 95% CI = 0.01, 0.08) and blood pressure was controlled for a significantly greater proportion of patients in the intervention group (adjusted odds-ratio = 1.85; 95% CI = 1.25, 2.72). Patients did not differ significantly in positive and active engagement in life. The intervention group reported a reduction in costs compared with control. Conclusions An intervention to provide tailored information and telephone-guided access to community resources was associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for patients with stage 3 CKD compared with usual care. However, further research is required to identify the mechanisms of action of the intervention. Trial Registration Controlled-Trials.com ISRCTN45433299