Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors.

OBJECTIVES: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers' experiences of caring, factors contributing to their stress, and strategies used to overcome stress. DESIGN: A qualitative approach involving in-depth interviews was used to explore informal carers' experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses. RESULTS: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers' emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers' pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers' strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives. CONCLUSION: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.

Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups.

BACKGROUND: Conventional systematic review techniques have limitations when the aim of a review is to construct a critical analysis of a complex body of literature. This article offers a reflexive account of an attempt to conduct an interpretive review of the literature on access to healthcare by vulnerable groups in the UK METHODS: This project involved the development and use of the method of Critical Interpretive Synthesis (CIS). This approach is sensitised to the processes of conventional systematic review methodology and draws on recent advances in methods for interpretive synthesis. RESULTS: Many analyses of equity of access have rested on measures of utilisation of health services, but these are problematic both methodologically and conceptually. A more useful means of understanding access is offered by the synthetic construct of candidacy. Candidacy describes how people's eligibility for healthcare is determined between themselves and health services. It is a continually negotiated property of individuals, subject to multiple influences arising both from people and their social contexts and from macro-level influences on allocation of resources and configuration of services. Health services are continually constituting and seeking to define the appropriate objects of medical attention and intervention, while at the same time people are engaged in constituting and defining what they understand to be the appropriate objects of medical attention and intervention. Access represents a dynamic interplay between these simultaneous, iterative and mutually reinforcing processes. By attending to how vulnerabilities arise in relation to candidacy, the phenomenon of access can be better understood, and more appropriate recommendations made for policy, practice and future research. DISCUSSION: By innovating with existing methods for interpretive synthesis, it was possible to produce not only new methods for conducting what we have termed critical interpretive synthesis, but also a new theoretical conceptualisation of access to healthcare. This theoretical account of access is distinct from models already extant in the literature, and is the result of combining diverse constructs and evidence into a coherent whole. Both the method and the model should be evaluated in other contexts.

British South Asian communities and infertility services.

This paper presents key findings from the first major study of the provision of infertility services to South Asian communities in the UK. The research aimed to explore the social meanings of infertility and to examine the experiences of couples receiving fertility treatment. Focus groups with people from Pakistani, Bangladeshi and Indian communities (n = 93) revealed a strongly pro-natalist ideology and a relatively limited knowledge of infertility and treatments. Interviews with 50 participants from the same communities revealed a general satisfaction with secondary level infertility services. However, a minority felt inadequately informed about their condition, tests undertaken and treatment options; only one-third were given any written information about treatment; many were concerned about delays and waiting times; a minority felt that staff could be more sympathetic in their response to 'failed' treatment and several couples suggested that additional emotional support would be helpful. No information or resources were available in any South Asian language and the arrangements for communication support for non-English speakers were generally less than adequate. There was little evidence of the use of data on ethnic or religious background in infertility clinics. Recommendations for policy and practice are proposed.

Do they look after their own? Informal support for South Asian carers.

Policy on care in the community was founded on the premise that the care of frail elderly people with disabilities would be a joint responsibility for health and social care professionals, and family carers, supported by people within their social networks. The policy assumes that such social networks are common features of all communities in contemporary Britain, containing a reserve of people who can be called upon to provide support to carers. The present paper draws on material gathered for a qualitative study of the experiences carers in South Asian communities to examine the quality and quantity of informal support that was available in different types of households. Male and female carers were selected from the Punjabi Sikh, Gujarati Hindu, and Bangladeshi and Pakistani communities. A total of 105 carers participated in the project. Participants were caring for people in all age groups with physical and/or mental distress, and in some cases, with multiple and complex impairments. The analysis of carers' accounts suggested that, for a variety of reasons, the main carer, irrespective of gender, had limited support both in nuclear and extended households. In addition, societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks. The paper concludes that the evidence does not support the assumption about extended families, and their willingness and ability to support carers. Many issues highlighted in this paper have far-reaching implications for policy makers in many countries in the West where South Asian people have made their homes.

Supporting South Asian carers and those they care for: the role of the primary health care team.

BACKGROUND: Demographic and socioeconomic changes have increased policy interest in informal carers. However, despite the multicultural nature of British society, most research in this field has been in majority communities. AIM: To explore the role of the primary health care team (PHCT) in supporting carers from British South Asian communities. DESIGN OF STUDY: Qualitative study. SETTING: Four South Asian communities in Leicestershire and West Yorkshire. METHODS: Focus groups and in-depth interviews were used to assess male and female carers, supported by a literature review. RESULTS: Failure to recognise carers' needs, gaps in service provision, and communication and language issues compromised carers' ability to care. While some carers were positive about the PHCT role, the main weaknesses concerned poor consultation, PHCT attitudes towards carers, and access to appropriate services. CONCLUSION: South Asian carers' experiences largely parallel those of others, but there are some issues that are distinct, namely, language and communication barriers, culturally inappropriate services, and implicit or explicit racism. The multi-ethnic nature of Great Britain requires that professional practice enhances the ability of minority ethnic communities to provide informal care. The findings underline the important role of the PHCT in ensuring that carers' needs are taken seriously and that appropriate services reach them.