A Parental Perspective on Living with a Chronically Ill Child: A Qualitative Study.

Sällfors, Christina; Hallberg, Lillemor R.‐M.

doi:10.1037/1091-7527.21.2.193

Cited by 50 publications

(64 citation statements)

References 27 publications

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“…Our participant fathers appeared to judge themselves against the traditional role of the man as protector and provider and to feel their competence erode as they struggled to support their family financially and in practical ways (Britton, 2001;McNeill, 2004;Sallfors & Hallberg, 2003). Baumann and Braddick's (1999) findings that potential challenges to masculinity through fathering a disabled child are countered by fathers' sense of their increased importance within their family were not reflected in our study.…”

Section: Theme 5: Social and Emotional Adjustmentcontrasting

confidence: 42%

“…Models of behaviour are provided by parents, within men's social networks, and displayed in public arenas (Chesler & Parry, 2001;Maurer & Pleck, 2006). Fathers were particularly susceptible to comparisons that revealed their child's physical limitations, particularly those of a son, and described missing shared sporting activities (Sallfors & Hallberg, 2003). Sport provides training in instrumental masculinity made visible in the athletic male body (Connell, 1995;Robertson, 2006), is the normative way boys develop a masculine identity (Watson, 2000), and can contribute to the 'male bonding' of father and son (Seidler, 2007).…”

Section: Theme 5: Social and Emotional Adjustmentmentioning

confidence: 99%

“…Baumann and Braddick's (1999) findings that potential challenges to masculinity through fathering a disabled child are countered by fathers' sense of their increased importance within their family were not reflected in our study. All fathers interviewed, except for the single father, appeared to be in a peripheral supporting role (see also Sallfors & Hallberg, 2003).…”

Section: Theme 5: Social and Emotional Adjustmentmentioning

confidence: 99%

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Concealed concern: Fathers’ experiences of having a child with Juvenile Idiopathic Arthritis

Waite-Jones¹,

Madill²

2008

Psychology & Health

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Despite increased research into families of chronically ill children, more needs to be known about the father's experience. We address this issue through asking: 'What is it like to be the father of a child with juvenile idiopathic arthritis?' (JIA). Four members of eight families with an adolescent diagnosed with JIA, including seven fathers, were interviewed and transcripts analyzed using grounded theory. This study suggests that fathers of children with JIA experience several severe losses which are exacerbated through comparisons they make between their own situation and that of fathers of healthy children. In addition, the fathers faced several constraints which reduced their opportunities to communicate with their ill child through shared activities. Fathers appeared to conceal their distress by adopting strategies of denial and distraction however their adjustment was facilitated, to some extent, by social support. They could also develop greater acceptance of their situation over time as the care of their ill child became assimilated into family life and constraints upon their life gradually reduced through the increased maturity of their son or daughter with JIA. These findings have implications for healthcare professionals and voluntary organizations.

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Section: Theme 5: Social and Emotional Adjustmentcontrasting

confidence: 42%

Section: Theme 5: Social and Emotional Adjustmentmentioning

confidence: 99%

Section: Theme 5: Social and Emotional Adjustmentmentioning

confidence: 99%

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Concealed concern: Fathers’ experiences of having a child with Juvenile Idiopathic Arthritis

Waite-Jones¹,

Madill²

2008

Psychology & Health

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“…The psychological distress felt by family members often results from their feelings of helplessness and lack of control. 3,38 Many different emotions are mentioned by family members; guilt, anger, worry, upset, frustration, embarrassment, despair, loss, relief. Each emotion affects family members in different ways and to different extents, often depending on the disease severity of the patient, 39,40 and the period of time that has passed since the diagnosis.…”

Section: Emotional Impactmentioning

confidence: 99%

The impact of disease on family members: a critical aspect of medical care

et al. 2013

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Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of “family” varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members’ lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialty- specific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient's close social group of partner and family.

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“…Besides role conflicts [1], socio-economic difficulties (e.g., among single parents [2]) or a child's chronic or life-threatening disease [3], everyday hassles related to childrearing such as annoying or noncompliant child behaviors [4] [5] constitute a prevalent source of parental strain. There is evidence that mothers are more negatively affected by parenting-related hassles [6] and demands resulting from household and family work [7] [8] than fathers.…”

Section: Introductionmentioning

confidence: 99%

Stress and Resources in Women Attending an Inpatient Prevention/Rehabilitation Measure for Parents: Secondary Analysis of Quality Assurance Data

Lukasczik¹,

Gerlich²,

Schüler³

et al. 2015

OJMP

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Questionnaire data from two projects on the development of quality assurance instruments for an inpatient rehabilitation/prevention program for parents were used for a secondary analysis. In this analysis, the associations of gains in a psychosocial resource (parenting self-efficacy) and two types of stressors experienced by mothers at the start of treatment (parenting hassles, depressive symptoms) with general life satisfaction and satisfaction with health at the end of treatment were explored. Structural equation modeling was applied to data from N = 1724 female patients. Potential resource-stressor interactions were tested using the Latent Moderated Structural Equations approach. Results showed that parenting hassles were negatively associated with general life satisfaction and satisfaction with health while self-efficacy gains were weakly positively correlated with both variables. No interaction of parenting hassles and self-efficacy gains was found. Depressive symptoms were negatively associated with both satisfaction measures. In these models, selfefficacy gains were not substantially correlated with life satisfaction, but showed a small association with satisfaction with health. There was no significant interaction of depressive symptoms and self-efficacy gains. The findings imply that interventions for distressed mothers-as exemplarily illustrated by this inpatient setting-should focus on identifying and reducing initial stressors as these may continue to impair mothers' subjective health despite gains in parenting-related resources. M. Lukasczik et al.24

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A Parental Perspective on Living with a Chronically Ill Child: A Qualitative Study.

Cited by 50 publications

References 27 publications

Concealed concern: Fathers’ experiences of having a child with Juvenile Idiopathic Arthritis

Concealed concern: Fathers’ experiences of having a child with Juvenile Idiopathic Arthritis

The impact of disease on family members: a critical aspect of medical care

Stress and Resources in Women Attending an Inpatient Prevention/Rehabilitation Measure for Parents: Secondary Analysis of Quality Assurance Data

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