Trajectory of parental hope when a child has difficult-to-treat cancer: a prospective qualitative study.

OBJECTIVE: This prospective and longitudinal study was designed to further our understanding of parental hope when a child is being treated for a malignancy resistant to treatment over three time points during the first year after diagnosis using a qualitative approach to inquiry. METHODS: We prospectively recruited parents of pediatric cancer patients with a poor prognosis who were treated in the Hematology/Oncology Program at a large children's hospital for this longitudinal grounded theory study. Parents were interviewed at three time points: within 3 months of the initial diagnosis, at 6 months, and at 9 months. Data collection and analysis took place concurrently using line-by-line coding. Constant comparison was used to examine relationships within and across codes and categories. RESULTS: Two overarching categories defining hope as a positive inner source were found across time, but their frequency varied depending on how well the child was doing and disease progression: future-oriented hope and present-oriented hope. Under future-oriented hope, we identified the following: hope for a cure and treatment success, hope for the child's future, hope for a miracle, and hope for more quality time with child. Under present-oriented hope, we identified hope for day-to-day/moment-to-moment, hope for no pain and suffering, and hope for no complications. CONCLUSIONS: For parents of children with a diagnosis of cancer with a poor prognosis, hope is an internal resource that can be present and future focused. These views fluctuated over time in response to changes in the child's well-being and disease progression.

An exploratory study of parents' approaches to health promotion in families of adolescents with physical disabilities.

BACKGROUND: The life expectancy of children with physical disabilities now extends into adulthood and has been accompanied by the transfer of rehabilitation services from institutions to the home. Thus, families must increasingly partner with health service providers to promote their child's health and prevent the development of secondary conditions that may contribute to heart disease, stroke, respiratory diseases, low endurance and emotional difficulties. AIM: To investigate within a family context the health promotion efforts of parents on behalf of a child with a physical disability. METHOD: The Long Interview Method was used to interview 15 families (11 two-parent and 4 single-parent) having a child 11-16 years of age with a physical disability including cerebral palsy (7), spina bifida (3), muscular dystrophy (3) and other conditions (2). RESULTS: Parents' health promotion efforts were characterized by three main themes. First, parents emphasized traditional lifestyle health behaviours including nutrition, physical activity, tobacco, alcohol and drug use, and personal hygiene. Second, parents tried to foster their adolescent's social life and friendships. They expressed particular concern about how, and if, their child would develop a sense of purpose and have a productive future. Third, parents invested a great deal of effort into observing daily routines, making arrangements for their child's social inclusion and supporting their child in a way that balanced independence with safety and energy conservation. CONCLUSIONS: Parents recognize that their child with a physical disability faces greater obstacles, and work hard at health promotion. Healthcare workers need to work with parents to: (1) provide information about specific lifestyle health behaviours including nutrition, physical activity and sexuality; (2) advocate for resources to foster social inclusion; and (3) discuss family strategies that balance parental involvement with their child's need for independence and energy conservation for daily activities.

Challenges of parenting for families living with HIV/AIDS.

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.