The experience of parenting children with chronic health conditions: a new reality

Abstract

The experience of parenting children with chronic health conditions: a new reality Aim. This study was undertaken to synthesise recent qualitative literature in the years 2000 to 2009, exploring the phenomenon of parents' experiences of parenting a child with one or more chronic health conditions. Background. The experience of parenting children with chronic health conditions has been predominantly studied by examining the effects of specific illnesses such as sickle cell anaemia and cystic fibrosis. While the chronic conditions may differ, the parents of children with any chronic illness appear to experience similar phenomena as they care for and parent their affected children. Method. Metasynthesis is an exacting process of analysis of focused qualitative research results aimed at advancing knowledge and concept development through the synthesis and summation of themes and concepts extracted from the included studies.Results. The parents of children with a wide range of chronic conditions described similar experiences in the reviewed qualitative studies. The key findings of this metasynthesis were major themes describing grief, particularly relating to the diagnosis, and as an ongoing chronic state; a lack of information; and the inadequacy of some relationships with professionals. Conclusion. This metasynthesis provides an enhanced empirical understanding of the experiences of people who parent and care for children with chronic health conditions as described by the reviewed literature. While it is apparent that many of these experiences are perceived as negative and undesirable, parents are also noted to describe positive experiences which enhance their lives and give them meaning. Relevance to clinical practice. This metasynthesis provides healthcare professionals with information pertaining to the lived experiences of the parents of children with chronic health conditions. It highlights areas requiring special attention such as communication, support, and understanding, and challenges the concepts of familycentred care and true partnership between the child, parents and professionals.

A Systemic Approach to Pediatric Chronic Health Conditions: Why We Need to Address Parental Stress

“…behavioral or emotional difficulties), and neglects the distress experienced by many parents. Parent distress interferes with their ability to assimilate new information at the point of diagnosis; subsequently, parents report a lack of information or misinformation and distrust for healthcare professionals (Kepreotes et al 2010). The risk is an increased chance of failure in condition management.…”

Parallel vigilance: Parents’ dual focus following diagnosis of Type 1 diabetes mellitus in their young child

“…A focus on the manifestations of expertise displayed by health professionals and by parents of a child with a chronic disease provides an opportunity to re-examine expert lay knowledge in the context of the specialty-medical consultation. Kepreotes and Keatinge (2010) conducted a metasynthesis of qualitative literature published between 2000 and 2009 that explored parents' experiences of parenting a child with a chronic health condition. Key findings describe parents' ongoing grief relating to diagnosis and beyond, lack of information and the inadequacy of relationships with professionals.…”

Hispanic Mothers’ Narratives: Experiences of Parenting a Child with Cystic Fibrosis, Health Beliefs, and Health Care Experiences Related to Cystic Fibrosis

“…While caring for a child with a chronic health condition demands much attention and time of the parenting role, it was also found be a most overwhelming task, resulting in fatigue, role strain, and depression. Characteristics such as grief, fear, vigilance, isolation, confusion, a fragile sense of control, advocacy, and uncertainty were described in two metasyntheses of parenting a child across a spectrum of chronic health conditions (J. S. Coffey, 2006;Kepreotes, Keatinge, & Stone, 2010). In addition, these studies reported more covert findings that many families eventually defined as a new normal.…”

“…In part, findings reflect inconsistent definitions of terminology, roles, functions, and contexts (Gage, Everett, & Bullock, 2006;Nicholl & Begley, 2012). Studies have explored parenting a child with a chronic health condition through a general perspective on chronic illness (J. S. Coffey, 2006;Kepreotes et al, 2010;Ray, 2002), disease-specific perspectives (Carpenter & Narsavage, 2004;Cronin, 2004;Moola, 2012), and other factors such as coping and adjustment (Rehm, 2000), family function (Knafl & Deatrick, 1986;McClellan & Cohen, 2007); sleep (Meltzer & Mindell, 2006;Yilmaz et al, 2008), and depression (Besier et al, 2011;Smith, Modi, Quittner, & Wood, 2010). Parenting a child with a chronic health condition has also provoked parenting studies, particularly the traditional maternal role as primary caregivers.…”

“…Two meta-syntheses captured salient pervasive findings from the literature (J. S. Coffey, 2006;Kepreotes et al, 2010). J. S. Coffey (2006) reported findings from 11 studies on parenting a child with a chronic illness.…”