Carers' burden and adjustment to HIV

Abstract

Empirical evidence from well designed studies into the effects on carers of caring for a person with HIV is lacking. This study investigated the correlates of carers' burden and adjustment to their caring for a person with HIV. Thirty-four carers and their HIV-infected patients were interviewed and completed self-administered scales. Measures included two psychosocial adjustment indices, a Problem Checklist (burden) and two patient health status indices. The most common elements of carer's burden were distressing emotions, relationship difficulties, somatic symptoms, and grief. Demographic variables, patient's HIV stage, nature of caregiving relationship and duration of caregiving were unrelated to carers' burden or adjustment. However, living arrangement was found to be significantly associated with carers' burden, with those carers co-residing experiencing more burden than those living apart from the patient. Carers' coping strategies were only weakly related to carer's adjustment and burden. The patients' emotional and existential concerns were strongly positively related to carers' burden and all domains of adjustment, while patients' instrumental concerns and measures of patients' health status were positively related to carers' burden. As predicted, patients had significantly poorer levels of adjustment than carers. The findings supported the use of a reciprocal determinism approach for understanding the relationship between the patient and carer and adjustment outcomes.

Application of a stress and coping model to caregiving in multiple sclerosis

“…This is consistent with anecdotal reports and earlier empirical evidence which show that it is the psychological aspects of caregiving that are often more taxing than the physical demands of caregiving (e.g. Pakenham et al, 1995).…”

“…Lazarus and Folkman's (1984) cognitive-phenomenological stress and coping theory has been widely used to guide research into adaptation to caregiving (e.g. Goode et al, 1999;Pakenham et al, 1995). This theory is transactional in that the person and the environment are viewed as being in a dynamic, mutually reciprocal relationship (Lazarus & Folkman, 1984).…”

Analysis of the burdens of caregivers providing care to people living with HIV/AIDS in Botswana

“…These findings are supported by O'Neill and McKinney 11 and Pakenham and Dadds, 8 who also categorised the caregivers' burdens as physical, social, emotional and financial and included forced changes in household routines, missed days of work, family friction, reduced social contacts, loss of income and reduced energy. In addition, a gender analysis of the caregivers' burdens reveals that, while men's major burdens are economic, those of women are mainly emotional and hinge on worries and feelings of guilt, characteristics demonstrated in women's care for the home and family members.…”

A Telephone-Based Intervention for Depression in HIV Patients: Negative Results from a Randomized Clinical Trial

“…Caregivers, in many instances, might have HIV disease, depression or competing familial demands, and therefore the ability to help the HIV patient may have been reduced. It is well documented that informal caregivers experience a broad range of negative reactions-helplessness, fear, depression, somatic symptoms-to their loved ones' medical disorders (Pakenham, 2001)) and that overall caregiver burden is significant in chronic diseases, including HIV (Lippman, James, & Frierson, 1993;Pakenham, Dadds, & Terry, 1995;Pirraglia et al, 2005). Our study included a wide variety of caregiver subtypes, from live-in romantic partners to friends, and this may have decreased our ability to discern whether particular caregivers contributed to decreased depressive symptoms.…”