Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project

Hatzmann, Janneke; Heymans, H. S. A.; Ferrer-i-Carbonell, Ada; Praag, B.M.S. van; Grootenhuis, Martha A.

doi:10.1542/peds.2008-0582

Cited by 170 publications

(146 citation statements)

References 30 publications

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“…Studies have shown high caregiving demands, [5][6][7] stress, 6,8,9 distress, 6,10 and lower health-related quality of life in caregivers. 11 Psychological outcomes have been found to be associated with the child's illness progression, perceived caregiving burden, social support, and financial burden. 5,6,9,10 However, survey and interview studies have also described components of DBMD caregiving that were perceived as beneficial, including an improved ability to appreciate life experiences and other positive coping strategies to manage the progressive disease course and chronic sorrow.…”

Section: Introductionmentioning

confidence: 99%

“…20 We also measured coping self-efficacy, which assesses perceived ability to cope with challenges and threats. 21 On the basis of the importance of disease progression on caregiver outcomes in the DBMD literature, 6,11 the functional status of the child with DBMD was also assessed. This longitudinal study includes data from three survey points (baseline, year 1, and year 2) and aims to: (i) assess the associations between child's functional status and mothers' resilience, illness perceptions and coping self-efficacy; and (ii) determine whether child's functional status and mothers' personal attributes, illness perceptions, and coping self-efficacy as measured at baseline predict mothers' psychological adaptation to DBMD 2 years later.…”

Section: Introductionmentioning

confidence: 99%

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Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

et al. 2015

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Duchenne and Becker muscular dystrophy (DBMD) cause significant emotional and care-related burden on caregivers, but no studies have evaluated predictors of positive caregiver outcomes, including disorder-specific psychological adaptation. Using a community-engaged approach focused on supporting mothers in positive aspects of caregiving, this prospective study aims to assess (i) the association between child's baseline functional status and mothers' illness perceptions, resilience, and coping selfefficacy; and (ii) predictors of mothers' psychological adaptation to caring for a child with DBMD. Biological mothers with at least one living child with DBMD completed a baseline survey (n = 205) with 1-year (n = 147) and 2-year (n = 144) follow-up surveys. Worse child's baseline function was associated not only with increased caregiver burden and reduced maternal resilience, but also with perception of positive disease impact on the family. At two follow-ups, increased psychological adaptation to DBMD was predicted by resilience (β = 0.264, P = 0.001) and perceived positive impact (β = 0.310, Po0.001), controlling for mother's age (β = − 0.305, Po0.001) and income (β = − 0.088, P = 0.245). Child's functional status and caregiver burden of DBMD did not predict DBMD-specific adaptation. Though clinicians caring for families with DBMD should anticipate increased caregiver burden as the disorder progresses, interventions focused on caregiver burden are not expected to influence mothers' psychosocial adaptation. Efforts to improve mothers' well-being should focus on fostering mothers' resilience and enhancing perceptions of positive disease impact (benefit finding). Results suggest that psychosocial interventions can highlight strengths and well-being rather than burden and deficit.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

et al. 2015

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“…Goldbeck (2006) found that parents of children with a chronic health condition, compared with parents of healthy children, reported a persistent impairment in most dimensions of perceived parental QoL. A study by Hatzmann, Heymans, Ferrer-i-Carbonell, van Praag, and Grootenhuis (2008) reported that, when compared to parents of healthy children, parents of chronically ill children had lower health-related QoL, with 45% of parents at risk for health-related QoL impairments, including difficulties in sleep, vitality, social functioning, daily activities, and emotions.…”

Section: Description Parents' Qol In the Context Of Pediatric Health mentioning

confidence: 99%

“…Another study in the Netherlands (Hatzmann et al, 2008) showed that parents of children with asthma, together with parents of children with sickle cell disease and metabolic diseases, reported lower QoL in a sample that was comprised of ten different conditions and a healthy comparison group. Differences in QoL among these parental groups may be difficult to explain due to the distinctive characteristics of the conditions and the heterogeneity of the samples in terms of disease severity and control.…”

Section: Specific Issues For Parents Of Children With Asthmamentioning

confidence: 99%

Parents with Asthmatic Children, Quality of Life

Crespo¹,

Silva²

2014

Encyclopedia of Quality of Life and Well-Being Research

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SynonymsCaregivers' health-related quality of life with asthmatic children; Caregivers' quality of life with asthmatic children; Parents' health-related quality of life with asthmatic children; Parental quality of life with asthmatic children. DefinitionAsthma is the most prevalent chronic health condition in childhood. The quality of life (QoL) of asthmatic children and their parents/caregivers has been increasingly acknowledged as an important outcome in pediatric asthma health care. Although children's QoL has been the main focus of research, scholars and clinicians in the field of pediatric chronic conditions have also started to take an interest in how parents perceive their own QoL. In this relatively new area of inquiry, research has conceptualized and assessed parents' QoL in diverse ways. Consequently, scientific literature on parents' QoL is heterogeneous, and a clear or consensual definition for this construct is still elusive.Two main approaches have been developed to study the QoL of parents with children who have chronic conditions, including asthma. A generic approach has examined parents' QoL according to the universal definition provided by the World Health Organization, which is that QoL is a multidimensional construct covering the physical health, level of independence, psychological state, social relationships and interactions with the environment, as subjectively perceived by the individual embedded in a cultural context (The WHOQOL Group, 1998). A specific approach, which is applied in the majority of studies, has looked at the perceived impact of a child's disease and treatments on

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“…Severity of this deterioration is associated with many different sociocultural and economic factors as well as social support 3 . Many previous studies have assessed the influence of child's chronic disease on QoL and psychosocial well-being of parents and caregivers and demonstrated impairment in many aspects such as sleep, social functioning, daily activities, vitality, positive emotions, and depressive emotions [4][5][6][7][8] . Similar psychosocial outcomes have been observed in siblings of children with a chronic disease and they were reported to have higher anxiety and depression as well as lower cognitive development and peer activities 9 .…”

mentioning

confidence: 99%

Does having an asthmatic sibling affect the quality of life in children?

Yılmaz¹,

Türkeli²,

Karaca³

et al. 2017

Turk J Pediatr

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Chronic illness in a family member leads to deterioration of quality of life in other members of that family. We aimed to investigate the influence of having an asthmatic sibling on a child's quality of life (QoL). We enrolled 2-12 year aged healthy children with an asthmatic sibling in the study group and healthy children with a healthy sibling in the control group of this cross-sectional study. Sociodemographic characteristics of children and disease severity characteristics of asthmatic siblings were recorded. All parents filled in Turkish generic PedsQL TM short form appropriate for the child's age group. Study and control groups had 114 children each. Total PedsQL TM scores were not significantly different in any of the age groups (p=0.23, p=0.13, p= 0.11 respectively). Emotional PedsQL TM sub-scores in children with an asthmatic sibling were significantly worse (83.0±16.5 vs 91.6±10.9 in the 2-4 year age group, 72.0±17.8 vs 92.2±11.6 in the 5-7 year age group, 73.7±24.1 vs 88.7±14.8 in the 8-12 year age group respectively, p≤0.002 for all). Similarly, psychosocial sub-score was significantly lower in the 2-4 and 5-7-year-olds but not the 8-12 year old groups (p=0.01, p=0.01, p=0.08 respectively). In conclusion, healthy children with asthmatic siblings have significantly lower emotional QoL and this needs to investigated for other chronic diseases in further research.

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Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project

Abstract: Parents of chronically ill children report a seriously lower health-related quality of life, which should receive attention and supportive care if necessary. A family-centered approach in pediatrics is recommended.

Cited by 170 publications

References 30 publications

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

Parents with Asthmatic Children, Quality of Life

Does having an asthmatic sibling affect the quality of life in children?

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