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This study approached pediatric adherence practices from the perspective of mothers of children with HIV in the USA. The study aimed to articulate what is involved in the daily life experience of giving or supervising a child's HIV medication (i.e., adherence practices) in order to clarify, in more dynamic terms than is often found in adherence research, what promotes or impedes adherence. A team-based qualitative analytic approach was used to analyze the narrative responses of 71 maternal caregivers of children with HIV to interview questions regarding the activities and stresses of caring for a child with HIV. Four themes of dealing with medication on a daily basis that impacted mothers' adherence practices emerged from the analysis: (1) Mothers' attitudes and feelings related to adherence practices. (2) The impact of the medications on adherence practices. (3) Interactions of mothers and children related to adherence practices. (4) Developmental issues and responsibility for medication adherence. These themes, taken together, demonstrate the contextual and longitudinal factors that impact adherence and illustrate the complexity of influences on adherence practices. We found that adherence practices were impacted in a positive way by mothers' commitment to adherence, and in a negative way by feelings of stigma and guilt, by the effects of bereavement on children and by children adopting their mothers' attitudes about medications. The interactive process of giving medication was shaped by children's behavior, mothers' developmental expectations for children, and, for mothers with HIV, their adherence for themselves. We found that pediatric adherence often came at a cost to the caregiving mother's well-being. Keywords: Medication adherence; Mothers' pediatric adherence; Adherence practices; USA; HIV medications; HIV/AIDS

Many studies across a variety of disciplines have identified differences in health status, health care access, and health care utilization by race/ethnicity. (1-5) During the past few years, however, there […]

This study was designed to explore why members of racial/ethnic minority groups, particularly African Americans, may not be using HIV/AIDS pharmaceuticals at the same rate as non-Latino whites, and what […]

Spiritual phenomena were spontaneously reported in interviews of 68 of 125 recently bereaved HIV-positive and HIV-negative partners of men who died from ADDS. Spiritual schemas involving beliefs, experiences, rituals, social support, and roles were used to help assimilate the fact of death and were appraised as sources of solace and meaning. The relationship between spirituality and coping, mood, and physical health was examined. Those reporting spiritual phenomena showed higher levels of depression and anxiety and lower levels of positive states of mind, used more adaptive coping strategies, and reported more physical health symptoms than those who did not report spiritual phenomena. It doesn't matter, for scientific purposes, it doesn't matter at all whether it's true. It doesn't matter whether I'm projecting the events, it doesn't matter whether I'm projecting my own concerns. It was a process, and it functioned, and it's my experience of Michael. I happen to believe that Michael's spirit was there, and that it spoke to me. - Recently bereaved partner of a man who died of AIDS

Narrative accounts of bereaved partners of men with AIDS provided data regarding caregiving, bereavement, and the period immediately following bereavement. The findings of the Harvard Bereavement Study were used to develop the Bereavement Response Scale I (BR-I), containing 21 items within 6 categories. Total scores were correlated with scores from 4 mood measures taken at the time of bereavement and again 12 months following bereavement. A significant association was found with the Positive States of Mind Scale. Item analysis suggested that a shorter version containing 6 items, the Bereavement Response Scale II (BR-II), might be a more effective predictive instrument. Further development of the BR-I and BR-II is proposed as a means for using narrative data to predict bereavement outcomes.

Narratives of 30 caregivers were scored for appraisals and coping responses following the death of their partners from AIDS. Appraisals were identified as valenced beliefs, emotions, and goal outcomes, whereas coping responses included goals and plans of action. The proportion of positive appraisals predicted long-term goals and plans and psychological well-being at both bereavement and 12 months later. Positive appraisals were correlated with positive morale and positive states of mind. The latter were negatively correlated with partner-centered, short-term plans. Positive appraisals were negatively correlated with depressive mood. Caregivers, who reported proportionately more positive appraisals during caregiving and after the loss of their partner, were more likely to have future- and self-oriented goals and plans and to demonstrate positive well-being at bereavement and better recovery 12 months later than were those who reported more negative appraisals.

This study of rituals of dying and death is based on narrative accounts of fifty-two gay men whose partners died of AIDS in the San Francisco Bay Area between 1991 and 1994. Sixty-seven percent of the deaths occurred at home, 71 percent of the caregiving partners were present at the time of death, and 71 percent of the dying partners chose cremation as a means of disposition. These factors influenced the nature of rituals enacted during the final stage of life, immediately after the death, and in the two months following the death. Culturally unique rituals included division of ashes with multiple distribution sites, multiple memorials, self-designed and delivered religious and secular memorials, and private dispersion of ashes without the use of mortuary services. The rites of death described in these data are reflective of the mobile life style among gay men as well as the drive for freedom and control of their own lives that is characteristic of gay liberation.

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T. A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted 2 and 4 weeks following bereavement. This follow-up study reports qualitative and quantitative data from 70 members of the earlier cohort, collected 3 to 4 years later, regarding the presence of spiritual phenomena. Spirituality increased or deepened in 77% of the entire cohort. An ongoing relationship with the deceased partner was reported by 70% of the cohort. The use of spirituality as coping appeared to decline as the bereaved moved further in time from the loss. Instead, spirituality was identified as a personal governing influence that provided value and direction to the individual. In general, relationships between the expression of spirituality and mood, coping, and physical health symptoms were not statistically significant owing to small samples, but there were medium effect sizes.

Presents a study on the rituals of the San Francisco Bay Area, California gay community regarding the dying and death of their partners due to AIDS. Results of the study; Factors influencing the nature of rituals of these men during the final stages of life, at death and two months after; Kinds of rituals performed.