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Recent policy debates are beginning to recognise the potential significance of race in formulating social care policy. This occurs within a wider policy context that emphasises user views. Community service provision, however, has not been responsive to the views of the black user. This paper, by exploring current policy and practice, argues that successful community care cannot rely merely on an understanding of black user views. It must also appraise the organisation and delivery of community services to people who form black minorities.

Cover -- Title Page -- Copyright Page -- Contents -- Foreword -- List of contributors -- Acknowledgements -- Part 1 Ethnicity and primary care -- 1 Meeting the challenges -- 2 Institutional racism, policy and practice -- 3 Issues in the organisation and delivery of primary care -- Part 2 Meeting the needs of the service user -- 4 Equity, clinical governance and primary care -- 5 User involvement in primary healthcare: problems, paradigms and prospects -- 6 Better partnerships, better services -- Part 3 Modernising primary care and improving clinical outcomes -- 7 Heart disease: an assessment of the importance of socio-economic position -- 8 Mental health: disadvantage, discrimination and distress -- 9 Diabetes: a challenge for health professionals and policy makers -- Part 4 Implications for policy and practice -- 10 Better knowledge, better care and better outcomes: implications for primary care policy and practice -- Index

BackgroundThe potential of adult siblings to offer long‐term support to a brother or sister with autism is rarely realized. To understand this, our study explores the expectations of social care among adult siblings.MethodUsing qualitative interviews, we spoke to 21 adult siblings about their family relationships and engagement with service delivery, met with 12 of their siblings with autism and talked to 12 social care staff.ResultsSiblings, although reflecting on the difficulties of growing up with someone who had autism, expressed a commitment towards their brother or sister. Most wanted involvement in their care. While some siblings described positive relationships with services, many felt marginalized. Practitioners largely confirmed their perceptions, while offering a justification for why they struggled to engage with adult siblings.ConclusionBy understanding the way relationships between siblings change over time, adult siblings' contribution to the lives of their disabled brother or sister can be better supported.

Summary Current policy discourses demonstrate a weak connection to broader theoretical debates about family obligation and in particular how family responsibilities become negotiated over time and across the life course. How policy imagines family care can, therefore, be different to the actual experiences of families. This qualitative paper, using semi-structured interviews, explores the experience of a particularly neglected group, adult siblings, who have a brother or sister with autism (plus learning disability). We spoke to 21 adult siblings, met with 12 of their siblings with autism and talked to 12 health and social care professionals. Findings Our analysis suggests that connectedness and commitment, which remained subject to continuous redefinition by all family members, informed sibling relationships Practitioners, however, struggle to engage with this complexity, thereby undermining the extent siblings' relationships can be realised. Application The paper concludes that policy initiatives are at risk of becoming an uneasy compromise, in which the need to offer choice occurs alongside the 'problem' of managing family care. Sibling relationships are more than simply 'being of' or 'belonging to' a family. They are dynamic, subject to contingency and negotiation. Interventions should be formulated to work with these assumptions, without presupposing a definite experience fixed in time and space. This would not only maximise the disabled siblings' quality of life, but also ensure a more productive and fulfilling context for family relationships.

AbstractInterventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life‐course. When evaluating such interventions, health‐related quality‐of‐life is regarded as a primary outcome and used to inform evidence‐based practice. Quality‐of‐life measures, however, are not straightforward heuristic devices but express technologies of epistemic power. By prioritizing methodological certainty over the credibility of personal testimonies, those experiencing disability can find themselves excluded from the evidence base on which public health interventions are based. Our study explores how disability is represented by tools informing evaluative public health research and establishes the possibility of alternate practices, including the potential for more appropriate measures better suited to representing experiences. We conclude by considering how discussions about "flourishing" can create more inclusive and empowering practices able to challenge inequalities and discrimination consistent with a commitment to social justice.Related ArticlesEwert, Benjamin. 2021. "Citizenship as a Form of Anticipatory Obedience? Implications of Preventive Health Policy in Germany." Politics & Policy 49(4): 891–912. https://doi.org/10.1111/polp.12421.Grijalva Maza, Luisa. 2012. "Deconstructing the Grand Narrative in Harry Potter: Inclusion/Exclusion and Discriminatory Policies in Fiction and Practice." Politics & Policy 40(3): 424–43. https://doi.org/10.1111/j.1747‐1346.2012.00358.x.Winburn, Jonathan, and Amanda Winburn. 2020. "The Role of Political Ideology in Public Opinion toward Enumerated Antibullying Policies in Public Schools." Politics & Policy 48(3): 442–63. https://doi.org/10.1111/polp.12355.