Family Caregivers' Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability

• Published in: Intellectual and developmental disabilities 2013-02, Vol.51 (1), p.62-73
• Main Authors: Swaine, Jamie G, Dababnah, Sarah, Parish, Susan L, Luken, Karen
• Format: Article
• Language: English
• Subjects: Adult; Adult and adolescent clinical studies; Aging; Attrition (Research Studies); Barriers; Biological and medical sciences; Breast cancer; Breast Neoplasms - diagnosis; Cancer; Caregivers; Cervical cancer; Death; Disabled Persons; Early Detection of Cancer; Evidence; Families & family life; Family; Family (Sociological Unit); Female; Female genital diseases; Females; Gynecology. Andrology. Obstetrics; Health care; Health Knowledge, Attitudes, Practice; Health Promotion; Health Services Accessibility; Humans; Influences; Intellectual deficiency; Intellectual disabilities; Intellectual Disability; Mammary gland diseases; Mammography; Medical sciences; Medical Services; Mental Retardation; Middle Aged; Nurses; Older people; Physicians; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Randomized Controlled Trials; Screening Tests; Semi Structured Interviews; Tumors; Uterine Cervical Neoplasms - diagnosis; Women; Womens health
• ISSN: 1934-9556; 1934-9491; 1934-9556
• DOI: 10.1352/1934-9556-51.01.062

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n = 32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed.