Academic journal article The Qualitative Report

The Family Context of Care in HIV/AIDS: A Study from Mumbai, India

Academic journal article The Qualitative Report

The Family Context of Care in HIV/AIDS: A Study from Mumbai, India

Article excerpt

Though the continuum of care model has been adopted in HIV/AIDS intervention, there is little empirical work documenting the experiences of caregiving families. Addressing this gap, a study on family caregiving and care receiving was undertaken in Mumbai, India. In-depth interviews were conducted with seven seropositive caregivers, seven seropositive care receivers and five seronegative caregivers. Thematic analysis of the data was conducted, yielding a number of key themes. This paper discusses the key theme of the family context of care which includes the caregiving system, family values, perceived mode of infection, gender of the seropositive person, and class. Implications of the findings for policy and program planning are discussed. Key words: Family, Care, and Organization of Care


HIV/AIDS has grown from an infection that at first was seen as affecting gay men in a few American cities into a pandemic. Nelkin, Willis and Parris (1990) maintain that AIDS:

   is no ordinary epidemic. More than a devastating disease, it is
   freighted with profound social and cultural meaning. More than a
   passing tragedy, it will have long-term, broad-ranging effects on
   personal relationships, social institutions and cultural
   configurations ... the effects of the epidemic extend far beyond
   their medical and economic costs to shape the very ways we organize
   our individual and collective lives. (p. 1)

Psychosocially, HIV/AIDS is a chronic illness with a long-term, incapacitating, terminal, and stigmatizing character. As is the case with other chronic illnesses, HIV/AIDS unleashes a devastating effect on affected families. Changes in family roles and relationships, drain on the family economy and deprivation, emotional distress, and caregiver burden are frequently observed outcomes, particularly contemporaneously when policies of community care and reduced social expenditure are forcing families to undertake the responsibility for their ill members. These effects are influenced by various family related factors such as structure, life cycle, processes, support systems, and belief systems as well as extra-familial influences, such as socio-cultural beliefs and health care services (D'Cruz, 1998).

But apart from these similarities, there are other unique effects, specific to the distinguishing features of the infection. Given the nature of the disease, it is not unlikely that the caregiver as well as the care recipient and perhaps other family members, are unwell too (Lesar & Maldonado, 1997; McCann & Wadsworth, 1994; Millon, Mantero-Atienza, & Szapocznik, 1992; Reidy, Taggart, & Asselin, 1994; Seeley, Kajura, Bachengana, Okongo, Wagner, & Mulder, 1994). Not only do caregivers have a dual role, being clients with psychosocial needs and service providers in need of advice and information to manage ongoing care (Sosnowitz & Kovacs, 1992), but they also experience extra demands, with limits on the care they can provide, alternating between periods of providing care and needing it. Further, since the pandemic has struck mainly young adults, caregiving engenders role reversals that represent major upheavals for families. Elderly parents and dependent, young children often end up performing the caregiving role, sometimes unsuited for their age (Lesar & Maldonado, 1997; McCann & Wadsworth, 1994; Reidy et al., 1994).

The caregiving experience for HIV/AIDS is therefore a complex one, singularly different from that of other chronic conditions (Lesar & Maldonado, 1997; McCann & Wadsworth, 1994; Reidy et al., 1994). The role of the family in the provision of care in HIV/AIDS is considered to be much more stressful than it is in other diseases. With the virus targeting mainly young adults in the sexually active and economically productive age group, with its stigmatizing and terminal nature and with the prolonged "living-dying interval" (Pattison as cited in Stephenson, 1985, p. …

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