Dharmi Kapadia

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.

Multidimensional Treatment Foster Care for Adolescents in English care: Randomised trial and observational cohort evaluation

BACKGROUND Children in care often have poor outcomes. There is a lack of evaluative research into intervention options. AIMS To examine the efficacy of Multidimensional Treatment Foster Care for Adolescents (MTFC-A) compared with usual care for young people at risk in foster care in England. METHOD A two-arm single (assessor) blinded randomised controlled trial (RCT) embedded within an observational quasi-experimental case-control study involving 219 young people aged 11-16 years (trial registration: ISRCTN 68038570). The primary outcome was the Child Global Assessment Scale (CGAS). Secondary outcomes were ratings of educational attendance, achievement and rate of offending. RESULTS The MTFC-A group showed a non-significant improvement in CGAS outcome in both the randomised cohort (n = 34, adjusted mean difference 1.3, 95% CI -7.1 to 9.7, P = 0.75) and in the trimmed observational cohort (n = 185, adjusted mean difference 0.95, 95% CI -2.38 to 4.29, P = 0.57). No significant effects were seen in secondary outcomes. There was a possible differential effect of the intervention according to antisocial behaviour. CONCLUSIONS There was no evidence that the use of MTFC-A resulted in better outcomes than usual care. The intervention may be more beneficial for young people with antisocial behaviour but less beneficial than usual treatment for those without.

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.

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.

Pakistani women's use of mental health services and the role of social networks: a systematic review of quantitative and qualitative research

Abstract Pakistani women in the UK are an at‐risk group with high levels of mental health problems, but low levels of mental health service use. However, the rates of service use for Pakistani women are unclear, partly because research with South Asian women has been incorrectly generalised to Pakistani women. Further, this research has been largely undertaken within an individualistic paradigm, with little consideration of patients’ social networks, and how these may drive decisions to seek help. This systematic review aimed to clarify usage rates, and describe the nature of Pakistani womens social networks and how they may influence mental health service use. Ten journal databases (ASSIA, CINAHL Plus, EMBASE, HMIC, IBSS, MEDLINE, PsycINFO, Social Sciences Abstracts, Social Science Citation Index and Sociological Abstracts) and six sources of grey literature were searched for studies published between 1960 and the end of March 2014. Twenty‐one studies met inclusion criteria. Ten studies (quantitative) reported on inpatient or outpatient service use between ethnic groups. Seven studies (four quantitative, three qualitative) investigated the nature of social networks, and four studies (qualitative) commented on how social networks were involved in accessing mental health services. Pakistani women were less likely than white (British) women to use most specialist mental health services. No difference was found between Pakistani and white women for the consultation of general practitioners for mental health problems. Pakistani womens networks displayed high levels of stigmatising attitudes towards mental health problems and mental health services, which acted as a deterrent to seeking help. No studies were found which compared stigma in networks between Pakistani women and women of other ethnic groups. Pakistani women are at a considerable disadvantage in gaining access to and using statutory mental health services, compared with white women; this, in part, is due to negative attitudes to mental health problems evident in social support networks.

The Autism Family Experience Questionnaire (AFEQ): An ecologically-valid, parent-nominated measure of family experience, quality of life and prioritised outcomes for early intervention

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.

How is the benefit of mixed social networks altered by neighbourhood deprivation for ethnic groups

ABSTRACT Previous research has shown that people who are in poverty live in deprived neighbourhoods. Ethnic minority groups are more likely than the White majority to be poor and live in such areas. The likelihood of being poor may be reduced by having access to mixed social networks. But, for those living in deprived neighbourhoods there may be neither opportunities nor resources to form and maintain social networks that are mixed in terms of their ethnic or geographic composition. This paper tests this contention, for ethnic groups in the UK. Specifically, we use the UK’s largest household survey to examine the relationship between deprivation and mixing by investigating the following research questions: (1) Does neighbourhood deprivation alter the influence of mixed social network on poverty status? and (2) Is the influence of neighbourhood deprivation and social networks on poverty status equivalent for all ethnic minority groups? Our results suggest that high neighbourhood deprivation tends to over-ride the positive associations of geographically mixed social networks. Moreover, while this result is strong for the White British majority, there is only weak evidence that it holds for ethnic minority groups. This may imply that resource constraints restrict social network benefits, particularly for ethnic minorities.

Ethnic differences in women’s use of mental health services: do social networks play a role? Findings from a national survey

ABSTRACT Objectives: The reasons for ethnic differences in women’s mental health service use in England remain unclear. The aims of this study were to ascertain: ethnic differences in women’s usage of mental health services, if social networks are independently associated with service use, and if the association between women’s social networks and service use varies between ethnic groups. Design: Logistic regression modelling of nationally representative data from the Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC) survey conducted in England. The analytic sample (2260 women, aged 16–74 years) was drawn from the representative subsample of 2340 women in EMPIRIC for whom data on mental health services, and social networks were available. Results: Pakistani and Bangladeshi women were less likely than White women to have used mental health services (Pakistani OR = 0.23, CI = 0.08–0.65, p = .005; Bangladeshi OR = 0.25, CI = 0.07–0.86, p = .027). Frequent contact with relatives reduced mental health service use (OR = 0.45, CI = 0.23–0.89, p = .023). An increase in perceived inadequate support in women’s close networks was associated with increased odds of using mental health services (OR = 1.91, CI = 1.11–3.27, p = .019). The influence of social networks on mental health service use did not differ between ethnic groups. Conclusions: The differential treatment of women from Pakistani and Bangladeshi ethnic groups in primary care settings could be a possible reason for the observed differences in mental health service use.