ethics of care

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings.

Participatory methodologies are frequently used in social research and have matured over the past decades. Ethical aspects of participatory research feature in retrospective accounts of partnerships that contribute to quality research, and those that were problematic to negotiate in the research partnership. Meanwhile, social researchers have shared concerns about meaningful transformations from research and the processes involved to achieve effective, responsive partnerships. As participatory methodologies have matured, so has an ethics of care.

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

Social inclusion is a contested concept that identifies the basis for social membership and valued activities in any society. Within social inclusion assessments, care is often overlooked or perceived to be a risk factor for exclusion and a barrier to inclusion. Drawing on ideas from care theories, the authors argue that social inclusion needs revising to take account of care.