Social support and barriers to family involvement in caregiving for persons with AIDS: implications for patient education

• Published in: Patient education and counseling Vol. 27; no. 1; pp. 85 - 94
• Main Authors: Smith, Meredith Y., Rapkin, Bruce D.
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier Ireland Ltd 1996
• Subjects: Acquired Immunodeficiency Syndrome - nursing; Adult; Aged; AIDS; AIDS/HIV; Caregiver; Caregivers - education; Caregivers - psychology; Family; Family - psychology; Female; Health Services Accessibility; Humans; Male; Middle Aged; Nursing; Nursing Assessment; Patient education; Patient Education as Topic; Social Support; Surveys and Questionnaires; Family; AIDS; Patient education; Caregiver; Social support
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/0738-3991(95)00792-X

If efforts to promote family involvement in patient education and other caregiving activities for people with AIDS (PWAs) are to be successful, clinicians need information concerning PWAs' family network and the barriers PWAs face in obtaining support. Using data from interviews with 224 PWAs in New York City, we assessed the size and composition of their family network and the self-identified barriers to support. Overall, respondents mentioned having an average of less than two sources of close support. Women relied on children for support more than men did. Male injection drug users and men reporting sex with men relied on friends and traditional family almost equally, while men at risk for HIV via heterosexual contact relied more on traditional family sources. Barriers to support included interpersonal costs, lack of access, lack of acceptance, lack of intimacy, negative interactions and fear of disclosure. Health professionals need to conduct comprehensive network assessments with PWAs in order to determine the full scope of support resources available to each patient. Educational initiatives that provide information about family conflict resolution and the course and transmission of HIV may assist in alleviating these barriers. Clinicians can facilitate family involvement in patient education by addressing the informational needs that are salient to both PWAs' and their family caregivers.