Holtslander, Lorraine

Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit.

Background: Life-threatening and life-limiting illnesses in children have profound implications for all family members, many of whom experience unmet health and support needs. Methods: Guided by literature on family-centered care and an Interpretive Description methodology, qualitative focus group interviews were conducted with 18 parental caregivers and health care and support providers to explore family experiences and identify care and support needs across the illness trajectory.

Family caregivers are the backbone of most health-care systems; intensively relied upon, yet their needs go mainly ignored. Technology has the potential to reach family caregivers and create accessible solutions to meet their complex needs. Creating a feasible, acceptable, and effective “app” requires the application of innovative qualitative methods. We combined methodologies including “agile methodology” that requires the continuous integration and involvement of the research team, caregiver participants, community partners, and a technology company, in our effort to develop the app.