Fathers’ contributions to the management of their child’s long‐term medical condition: a narrative review of the literature

Abstract

Context FathersÕ contributions to the management of long-term childhood medical conditions are under-represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered.Objective To review studies of fathersÕ actual contributions in a wide range of conditions, the potential to optimize their contribution through additional interventions by health professionals and a direction for future research.Design Narrative review of the literature.Methods CINAHL, Medline, PsychInfo and ERIC databases were searched electronically between the years 1995-2008. The terms adherence, adjustment, child, chronic, compliance, concordance, condition, coping, disease, father, illness, information, long-term, management ⁄ intervention, mother, role, self-care and treatment were searched for separately and in combination. English language papers reporting primary research were selected and supplemented by handsearching reference lists. Thirty-five papers (arising from 29 studies) met criteria and were selected for narrative review.Results Five themes were identified: (i) the impact of long-term conditions on fathersÕ ability to promote their childÕs well-being, (ii) factors influencing fathersÕ involvement in health care, (iii) personal growth ⁄ beneficial effects for fathers, (iv) the impact of fatherÕs involvement on family functioning and (v) strategies that increase fathersÕ participation in their childÕs health care and in research investigating fathersÕ participation.Conclusions The review suggests that fathersÕ involvement in childrenÕs health care can positively impact on fathersÕ, mothersÕ and childrenÕs well-being and family functioning. A range of strategies are identified to inform the promotion of fathersÕ contributions and future research investigating their input.

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

“…For mothers and fathers of children with long-term conditions, family life often focuses on the demands of managing the child's condition (Swallow, Macfadyen, Santacroce & Lambert, 2012;Knafl, Deatrick, Gallo, Grey & Dixon, 2013); Swallow, Nightingale, Williams, Lambert, Webb et al, 2013), and the evolving role of parents to one of care provider (Ward, Glass & Ford, 2014). Through experience, parents become responsive to their child's needs and can provide highly individualised care (Bailing & McCubbin, 2001;Kirk, Glendinning & Callery, 2005;Ward, Glass & Ford, 2014).…”

“…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).…”

“…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). Consequently parents expect care to be negotiated (Dickinson et al 2006) and that they will be involved in care decisions (Fawcett, Baggaley, Wu, Whyte & Martinson, 2005).…”

Care provided by the father to the child with cancer under the influence of masculinities: qualitative meta-synthesis

“…Thus, fatherhood has taken on new values and concerns (3)(4) . When there is a child with a chronic illness in the family, the father is crucial for the process of family adjustment, aimed at including the disease and maintaining balance in family life (5) . Health professionals acknowledge the important role of the father in the care of the child.…”

Collaborating With Parents of Children With Chronic Conditions and Professionals to Design, Develop and Pre-pilot PLAnT (the Parent Learning Needs and Preferences Assessment Tool)

“…Studies of chronic disease management acknowledge the 'work' associated with parental care giving (Hexem, Bosk, & Feudtner, 2011), the ways families adjust (Aldridge, 2008), and the fact that fathers and mothers may have differing support needs (Sullivan-Bolyai, Rosenberg, & Bayard, 2006;V. Swallow, Macfadyen, Santacroce, & Lambert, 2012).…”