Parent Quality of Life in the Context of Pediatric Inflammatory Bowel Disease

Greenley, Rachel Neff; Cunningham, Carin

doi:10.1093/jpepsy/jsn056

Cited by 24 publications

(31 citation statements)

References 24 publications

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“…In the current study, the inclusion of fathers provided the opportunity to compare mother-and father-reported individual and family HRQoL and to investigate whether biological and psychological factors independently and differentially impact maternal and paternal perceptions of parent and family HRQoL. Consistent with Greenley and Cunningham's [20] findings, as youth disease activity increases, both mothers and fathers report lower HRQoL, and fathers report lower family HRQoL. Interestingly, disease activity is associated with all paternal outcomes, but only one of two maternal outcomes.…”

Section: Discussionmentioning

confidence: 78%

“…Higher disease activity was associated with poorer maternal HRQoL in studies of mothers of youth with chronic illnesses such as diabetes and asthma [18,19]. Similarly, there is evidence to support a link between higher youth disease activity and lower mother HRQoL in pediatric IBD [20]. Although no studies have directly examined the relationship between disease activity and maternal perceptions of family HRQoL among pediatric IBD populations, Wood and colleagues [21] found that higher disease activity was associated with poorer family functioning.…”

Section: Impact Of Youth Disease and Adjustment Factorsmentioning

confidence: 99%

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Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease

2011

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Section: Discussionmentioning

confidence: 78%

Section: Impact Of Youth Disease and Adjustment Factorsmentioning

confidence: 99%

Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease

2011

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“…Recently, Greenley and Cunningham 74 performed a cross-sectional study of 49 IBD youths aged 10 -18 years and measured parental QOL using the RAND 36 Health Survey 1.0. This was the first study known to compare the parental QOL to that of a normative population.…”

Section: Family/social Supportmentioning

confidence: 99%

Strategies to improve quality of life in adolescents with inflammatory bowel disease

Karwowski

Keljo

Szigethy

2009

Inflammatory Bowel Diseases

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Inflammatory bowel disease (IBD), which encompasses Crohn's disease (CD) and ulcerative colitis (UC), are chronic and debilitating conditions with unpredictable courses and complicated treatment. Pediatric IBD carries implications that extend beyond the health of the gastrointestinal tract. When these lifelong illnesses are diagnosed during adolescence, a critical developmental period, the transition to adulthood can be even more turbulent. Like other chronic diseases of childhood, patients with IBD are at risk for depression, anxiety, social isolation, and altered self-image, which can all negatively affect health-related quality of life (HRQOL). The review will draw from pertinent adult and pediatric literature about HRQOL over the past 10 years using a PubMed literature search to summarize instruments with which HRQOL is measured, and address factors that affect HRQOL in adolescents and young adults with IBD. Psychosocial interventions that have been utilized to improve quality of life in this population will also be covered. Identifying patients with impaired quality of life is of paramount importance, as is implementing strategies that may improve HRQOL, so that they may have an easier transition to adulthood while living with IBD.

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“…Chronic diseases in children impact not only the patients themselves but also their families including parents and siblings [4][5][6]8,[16][17][18][19] . Despite the fact that both chronic disease in the child and impaired QoL and psychosocial status of parent influences QoL in the sibling negatively, this area is not studied as extensively in asthma.…”

Section: Discussionmentioning

confidence: 99%

“…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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Parent Quality of Life in the Context of Pediatric Inflammatory Bowel Disease

Abstract: Although as a group parental QoL was high, when youth are experiencing disease exacerbations or impaired QoL, parents may benefit from assessment and support.

Cited by 24 publications

References 24 publications

Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease

Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease

Strategies to improve quality of life in adolescents with inflammatory bowel disease

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

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