Adjustment and coping by parents of children with cancer: a review of the literature

Grootenhuis, Martha A.

doi:10.1007/s005200050116

Cited by 194 publications

(186 citation statements)

References 84 publications

(175 reference statements)

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“…They described how, over time, NF1 became a part of their lives, but it was always on their mind and events could act as triggers that easily took them back to a very emotional state of being. Similar patterns of adjustment and coping are reported in Grootenhuis and Last's (1997) review of coping and adjustment of parents of children with cancer. Fisher (2001) writes that a change of lifestyle clearly takes place for parents when their child has a chronic condition.…”

Section: Discussionsupporting

confidence: 76%

“…What is less clear is how parents manage the changes that chronic illness brings. Adaptation may be related to informational needs being met (Cavallo et al 2009), individual personality traits (Vermaes et al 2008), social support and optimism (Grootenhuis and Last 1997). Yet parents in the current study highlighted the challenges of accessing social support due to a perceived lack of understanding of NF1, and finding trustworthy information about the condition was a concern for some parents.…”

Section: Discussionmentioning

confidence: 78%

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Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

2015

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Neurofibromatosis type 1 (NF1) is a variable and unpredictable genetic condition that can lead to changes to an individual's appearance. Research has started to explore children's and young people's experiences of living with the condition; however, there is a lack of research with parents. This exploratory qualitative study set out to examine parents' experiences of caring for a young person with NF1. Seven parents took part in semi structured interviews which were subjected to a thematic analysis. Three key themes were identified which related to managing the uncertainty of the condition, the impact of an altered appearance, and others' awareness and understanding of NF1. Parents felt that understanding NF1 themselves in order to support their child was beneficial whilst a perceived lack of understanding by others was cited as a significant challenge. Parents require trustworthy information and also more widely call for greater understanding and awareness of the condition.

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Section: Discussionsupporting

confidence: 76%

Section: Discussionmentioning

confidence: 78%

Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

2015

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“…Nevertheless, many long-term survivors of childhood cancer turned out to function well [11,12](see reviews by Langeveld et al [3] and Stam et al [4]). This appeared also to be true for their parents; overall, most of them did not experience more emotional disturbances than healthy controls [13][14][15][16]. However, if illness related concerns were taken into account, parents of survivors of childhood cancer seemed to experience feelings of uncertainty and loneliness [17,18].…”

Section: Introductionmentioning

confidence: 87%

Health‐related quality of life in children and emotional reactions of parents following completion of cancer treatment

Stam

Grootenhuis

Brons

et al. 2005

Pediatric Blood & Cancer

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BackgroundCompleting therapy is one of the major transitions in care in the practice of pediatric oncology and, therefore, deserves special consideration. The purpose of the study was to investigate health‐related quality of life (HRQOL) of pediatric patients, and emotional reactions of their parents, shortly after the end of successful treatment.MethodsHRQOL of 126 patients, aged 1–15 years, on average 2 months after the end of successful treatment, was assessed with the TNO‐AZL Pre‐school Quality of life Questionnaire and the TNO‐AZL Children's Quality of life Questionnaire. Emotional adjustment of 124 mothers and 111 fathers was assessed with the General Health Questionnaire and the Situation Specific Emotional Reaction Questionnaire. The outcomes of the patients and parents were compared with norm data by means of one sample t‐tests, one sample sign‐tests or binomial tests.ResultsAll age groups, except patients aged 8–11 years, experienced worse HRQOL than the norm with respect to motor functioning. In addition, pre‐school patients were rated worse on sleeping, appetite, stomach, skin, problem behavior, anxiety, and liveliness, and patients aged 6–7 years on autonomy and cognitive functioning. Parents reported more psychological distress than the norm. Compared to parents whose children were 1–5 years after cancer treatment, they suffered more from feelings of loneliness, helplessness, and uncertainty.ConclusionsA few months after the end of successful cancer treatment, both patients and parents appeared to experience worse well‐being than the norm to a clinically relevant extent. Supporting patients and parents should not stop when treatment ends. Pediatr Blood Cancer 2006;47:312–319. © 2005 Wiley‐Liss, Inc.

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“…Although most parents show remarkable resilience over time, for a subgroup of parents, levels of psychological distress remain high throughout the entire treatment period and thereafter [1][2][3][4][5]. Heightened levels of depression [6,7], anxiety [8][9][10][11], stress [10,12], a decreased quality of life [13], marital distress [14,15] and post-traumatic stress symptoms (e.g.…”

Section: Introductionmentioning

confidence: 99%

Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi‐center study

et al. 2010

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Egeler, R. M. (2010). Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study. Psycho-oncology, 19(4), 368-375. DOI: 10.1002/pon.1571 Copyright Other than for strictly personal use, it is not permitted to download or to forward/distribute the text or part of it without the consent of the author(s) and/or copyright holder(s), unless the work is under an open content license (like Creative Commons).Take-down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim.Downloaded from the University of Groningen/UMCG research database (Pure): http://www.rug.nl/research/portal. For technical reasons the number of authors shown on this cover page is limited to 10 maximum. AbstractObjectives: Diagnosis and treatment of childhood cancer are continuous stressors in the lives of the entire family involved. Disease-related tools for the assessment of parental stress and adaptation are scarce. For that reason, the Pediatric Inventory for Parents (PIP), a diseaserelated measure, was translated into Dutch and its psychometric qualities were determined to prove its value. Methods: The PIP and three other measures (State-Trait Anxiety Inventory, General Health Questionnaire and Parenting Stress Index, Short Form) were administered to 174 parents of 107 children diagnosed with cancer in three university medical centers in the Netherlands.Results: Internal consistency (Crohnbach's a 5 0.94 and 0.95) and test-retest reliability (Pearson's r between 0.67 and 0.87) of the Dutch PIP total scales are satisfactory. Validity was illustrated by a high correlation between PIP-scores and anxiety and general stress. Confirmatory factor analysis showed acceptable fit to the data for the original four-factor and the one-factor models; the four-factor model showed slightly better fit.Conclusion: The PIP can be used in clinical practice to assess disease-related parental stress. Further psychometric testing is highly recommended.

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Adjustment and coping by parents of children with cancer: a review of the literature

Cited by 194 publications

References 84 publications

Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

Parents’ experiences of caring for a young person with neurofibromatosis type 1 (NF1): a qualitative study

Health‐related quality of life in children and emotional reactions of parents following completion of cancer treatment

Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi‐center study

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