In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample. Issues related to social isolation due to infection control precautions were predominant. Themes included emotional upheaval, communication challenges, and changes in parental and professional roles. These findings reveal the cogent effects of SARS on family-centered care. The notion of providing family-centered care within an environment plagued by an infectious outbreak suggests an omniously difficult task. Efforts must be made to optimize family-centered care despite obstacles. The authors suggest effective clinical approaches in the event of future outbreaks.
Given the continual rise of HIV infection in our communities and the improved life span for many who are HIV-positive, social workers in all fields of practice have clients whose lives have been touched by HIV/AIDS. This article reviews relevant literature and reports on the parenting needs that emerged in a Canadian study that examined the experiences of 105 mothers and fathers living with HIV/AIDS. The majority of the children in the study were not HIV-positive. Some themes related to parenting in the literature, and evident in this study, were chronic sorrow, stress and burden, normalization, stigma, secrecy, and disclosure. In the study parenting was found to be a source of joy and an additional challenge in an already complicated life. Important new themes were family life as precious time, focused parenting, the different effects of HIV/AIDS, the parenting preparation needs of fathers, and the efforts to parent affected and infected children differently. Parenting when living with HIV/AIDS requires attention from clinicians and researchers in a range of settings.
This paper reports on the findings from a multi-site psychosocial study of Canadian families with HIV-positive mothers. A total of 110 adults, representing 91 families across Canada participated in interviews. Qualitative analysis revealed a number of themes including: a complex web of personal, health and family concerns; the needs of children; family finances; disclosure dilemmas; and social experiences and challenges. These themes reflect an intricate and dynamic picture of parental and family life for adults and children living with HIV infection. Nowhere in the literature do we see HIV framed as a 'family infection'. Surveillance reporting reflects information on infected adults and children but not family groupings. Yet with HIV several family members and multiple generations as well as single or both parents may be infected, highlighting the importance of 'family HIV' as a framework for health policy and programme development. At issue is the problem that medical and other institutions view issues of surveillance, treatment and care through the lens of the infected individual, rather than being family focused. Often it is only in the context of identifying support, or barriers to support, for the medically diagnosed individual that biological or socially created families become a focus of concern. The failure to situate both chronic and life-threatening illnesses within the family setting has serious quality of life and planning consequences for parents and children living with HIV infection as well as other illnesses.
Psychosocial issues related to pediatric isolation remain relevant to both clinical practice and research. The early theories of Bowlby and Robertson are central to this discussion for it was predominantly their work that elicited several policy changes aimed at improving psychosocial care in pediatric settings. Recognizing the significant effects of isolating hospitalized children is just as relevant today where serious infectious diseases can lead to separation of family members. An ethnographic, qualitative study examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 23 participants: five children, 10 parents, and eight health care providers. Data analyses illuminated a range of perceived experiences for this triadic sample. Themes related to the effects of social isolation on children were predominant. They included emotional upheaval, changes in parental and professional roles, and familial experiences following hospital discharge. Finally, the paper draws on the findings of the present study and other recent work in offering recommendations for effective clinical approaches in the event of future outbreaks.
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