Children with a Long-Term Illness: Parents' Experiences of Care

The Described Experience of Primary Caregivers of Children With Mental Health Needs

“…Consistent with previous studies, caregivers described a mental health system that was not only hard to access, but for the most part did not function effectively to meet their children's needs and address their caregiving challenges (Goldberg-Arnold, Fristad, and Gavazzi, 1999;Nuutila & Salantera, 2006). Like caregivers of children with physical disabilities, the caregivers in this study described a protracted, convoluted, and frustrating process of accessing care for their children (Jackson et al, 2008;Lutenbacher et al, 2005;Parminder et al, 2005;Rosenwald & Bronstein, 2008;Scharer, 2002;Smith & Smith, 2000).…”

“…Our study findings about the benefits of support groups with others going through similar experiences reinforce the work of other researchers who reported that access and participation in support groups helped to increase caregivers' ability to understand themselves and others, to talk and be listened to without judgment, to put their problems into perspective, and to make use of the group to provide an outlet for stress relief. (Jackson et al, 2008;Lefley, 1997;Lovenfosse & Viney, 1999;Nuutila & Salantera, 2006;Rosenwald & Bronstein, 2008;Vilela, Phillips, and Minnes , 2008).…”

“…These caregivers describe the challenges of not knowing what is wrong with their children, the stress of seeking diagnoses, and the need to acquire the knowledge and skills to provide medical care for their children, in addition to the burden of their day-to-day practical needs (Nuutila & Salantera;. Further, these caregivers face challenges related to the time and effort required to get the children ready for outings such as medical appointments and to transport medical assistive devices such as wheel chairs from their homes to other locations and back (Yantzi et al, 2006).…”

“…Further, these caregivers face challenges related to the time and effort required to get the children ready for outings such as medical appointments and to transport medical assistive devices such as wheel chairs from their homes to other locations and back (Yantzi et al, 2006). Finally, they report difficulty accessing adequate respite care because of the special skills required to care for their children (Nuutila & Salantera;Yantzi et al, 2006).…”

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Evidence suggests that care-giving such as providing medical and nursing interventions above usual parenting tasks is a significant feature of living with a child with a long-term condition for both fathers and mothers (Cashin, Small & Solberg, 2008;Smith, Cheater & Bekker, 2013a;Wennick & Hallström, 2007). In order to manage their child's condition, parents need to; gain knowledge of the condition and treatments (Bailing & McCubin 2001;Knafl, Deatrick, Knafl, Gallo, et al, 2013, Nuutila & Salanterä, 2006; learn how to identify and respond to illness symptoms in their child (Smith, Cheater, Bekker & Chatwin, 2013b;Wennick & Hallström, 2007); and develop effective relationships with health professionals (Dickinson, Smythe, & Spence, 2006;Swallow & Jacoby, 2001;Swallow, Lambert, Santacroce, Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012). Many mothers and fathers living with a child with a long-term condition develop considerable expertise in managing their child's condition and want to work in partnership with health professionals (Swallow, Lambert, Santacroce & Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012;Smith, Cheater, Bekker & Chatwin, 2013c).…”