title: Paid- and family-carers' views on supporting women with intellectual disability through breast screening.
abstract: The cancer needs of people with intellectual disabilities are increasingly being debated. This paper explores the views and experiences of paid- and family-carers when supporting women with intellectual disabilities through breast screening. An ethnographic approach was drawn on and purposive sampling methods were employed. One-to-one semi-structured interviews with 13 carers (10 paid-carers, three family-carers) were undertaken and supported by periods of focused observation on behaviour related to breast awareness and breast screening. Findings indicated that most women with intellectual disabilities needed some support but the quality and quantity of support depended upon both the woman's level of intellectual disability and who was supporting them. In terms of breast screening, the findings suggested that the women were potentially being let down at all the different stages of the breast screening process, from the arrival of the invitation letter to the experience of having a mammogram. The conclusion drawn was that there was evidence of equality of service provision but inequality of service delivery and uptake.
authors.affiliation: Nursing and Health Care, School of Medicine, Veterinary and Life Sciences, University of Glasgow, Glasgow, Scotland.
authors.forename: D S
authors.initials: DS
authors.lastname: Willis
authors.affiliation: Nursing and Community Health, School of Health & Life Sciences, Glasgow Caledonian University, Glasgow, Scotland.
authors.forename: L
authors.initials: L
authors.lastname: Kilbride
authors.affiliation: School of Nursing, Midwifery and Social Care, Faculty of Health, Life & Social Sciences, Edinburgh Napier University, Edinburgh, Scotland.
authors.forename: D
authors.initials: D
authors.lastname: Horsburgh
authors.affiliation: Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland.
authors.forename: C M
authors.initials: CM
authors.lastname: Kennedy
mesh_terms: D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000517:prevention & control / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D055088:Early Detection of Cancer; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology*; D008297:Male; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D011369:Professional-Patient Relations; D012944:Social Support; D055815:Young Adult
keywords: breast screening; family-carers; focused ethnography; intellectual disability; paid-carers; support