Parenting Foster Children With Chronic Illness and Complex Medical Needs

Abstract

The experience of parenting foster children with chronic illness and complex medical needs was explored in a phenomenological inquiry with 10 foster families. Thirteen participants currently fostering chronically ill children with complex medical needs were interviewed. Recorded interviews were transcribed and analyzed using van Manen's method. Data analysis yielded five essential themes: Foster parents described being committed to the child in their care, coming to know the needs of a medically complex foster child, and identifying effective and ineffective interventions encountered through day-to-day living with a medically complex child. Furthermore, they shared what it was like to experience loss of a child through relinquishment and death. Last, for these parents, fostering children with complex health care needs was a life-changing experience. The findings show that parenting a chronically ill foster child with complex medical needs is a multifaceted experience having implications for multiple disciplines.

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

“…Examples vary and include children who have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, or patients with cancer/cancer survivors with ongoing disability in multiple areas. Terms traditionally used to describe this subgroup include a combination of children with 1 or more of the following terms: complex, chronic, medical, conditions, and/or needs (eg, complex chronic conditions [CCCs], 5 complex medical needs, 6 complex medical conditions, 7 and complex health conditions 8 ), as well as medically complex children. 9,10 In this article, we use the term "children with medical complexity" (CMC).…”

Defining Technology Dependence in Children and Adolescents

“…The current inclusion of caregivers reflects a more holistic view, and recognizes the importance of the work of caregivers at home and elsewhere. The complexities of health care needs (n = 10) are recognized in the terminology used in recent publications (Hewitt-Taylor, 2008;Kirk, 2001;Kuo, Cohen, Agrawal, Berry, & Casey, 2011;Lauver, 2008;Law, McCann, & O'May, 2011;MacDonald & Callery, 2008;MacDonald & Gibson, 2010;Rehm & Bradley, 2005b;Thurston et al, 2010;Watson, Abbott, & Townsley, 2007). However, while some of these studies have included technology in their definitions, they have not provided details on the technologies used by these children and adolescents (Hewitt-Taylor, 2008;Law et al, 2011;Thurston et al, 2010).…”

Medicinal commodities and the gift of a caring mother

“…They differentiate between the expertise of doctor and their own experience, yet still view both as legitimate sources of insight. Their accounts also convey how caring for children and navigating the formal healthcare system can be an intense emotional experience for parents, involving uncertainty, worry, anxiety and concern (Bussing and Gary, 2001;Lauver, 2008). Sarah's use of explicit language, as well as increases in the volume and pace of her dialogue, reflects the stress, frustration and desperation she experienced during this event.…”

“…Porter's (1985) concept of the 'family physician' is relevant to the way these mothers act as mediators in their children's relationships with medical professionals, as well as 'prescribers' of substances in their own right (Hodgetts et al, 2011b). Mothers actively consult professionals, and supervise their children's treatment, and ensure compliance with and, where necessary, changes to medication regimens (Lauver, 2008). These are creative consumers whose efforts to navigate the formal health system in the interests of their children, and whose talk of accessing, researching and providing medications to children, and advocating on their behalf, invokes the gift of care metonymically.…”