Fathers’ Experience of Parenting a Child With Juvenile Rheumatoid Arthritis

Abstract

The author examined the experience of fathers who have a child with juvenile rheumatoid arthritis (JRA). He used grounded theory methodology, in which 22 fathers participated in semistructured interviews, and developed a substantive theory of fathers' experience that addresses the impact of their child's JRA, their adaptational responses, and the meanings they associated with their experiences. Fathers were profoundly affected, perceived their child's condition as a catalyst for meaningful involvement, experienced many emotions, and sought to adopt a positive approach to making sense of their child's condition. Fathers' efforts to be strong for others resulted in an overreliance on self-support strategies, particularly during periods of high stress. Given the nature of fathers' experience and the extent of their involvement, greater attention by health care practitioners to fathers' adaptation is indicated.

Fathering a Child with a Disability in India: A Perspective from Mumbai

“…Fathers themselves benefit from more involvement with a child who has a disability. Fathers of children with chronic illness or disability report experiencing amore "holistic" identity of themselves as fathers (McNeill, 2004) and an overall greater personal growth (Meyer, 1986).…”

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

“…Because most studies have focused on the experiences of mothers as the primary caregivers, future studies should include male caregivers as well as other children in the family. Continuing to ignore fathers' experiences undermines efforts to help decrease mothers' caregiver burden (McNeill, 1999). In addition, recruitment efforts are needed to increase the number of ethnic minorities (Doornbos, 2002;Litt, 2004;McNeill, 1999;Nelson, 2002) in caregiver research studies in order to more fully understand and effectively address the needs of all caregivers of children with mental health needs…”

Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

“…Britton & A. Moore, 2002; C. Britton & A. Moore, 2002; Gomez-Ramirez et al, 2016; Jerrett, 1994; Jones, Rodger, Broderick, & De Monte, 2009; Knafl, Leeman, Havill, Crandell, & Sandelowski, 2015; McNeill, 2004; Stinson et al, 2012; Waite-Jones & Madill, 2008). The majority of these studies involve parents of 6-to-18-year-old children diagnosed 1–16 years prior to the time of interview, or are limited to specific experiences (e.g., parents’ emotional experience).…”