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Parental fears following their child's brain tumor diagnosis and treatment
Astrid Lindgren Children's Hospital, Stockholm, Sweden .ORCID iD: 0000-0002-3691-7086
2009 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 26, no 2, p. 68-74Article in journal (Refereed) Published
Abstract [en]

The objective of this study is to portray the illness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their child's brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treatment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of individualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.

Place, publisher, year, edition, pages
Sage Publications, 2009. Vol. 26, no 2, p. 68-74
Keywords [en]
childhood cancer, central nervous system tumors, late effects, parental fears, survivors
National Category
Social Sciences
Research subject
Psychology
Identifiers
URN: urn:nbn:se:kau:diva-48162DOI: 10.1177/1043454208323912ISI: 000265137400002PubMedID: 19190177OAI: oai:DiVA.org:kau-48162DiVA, id: diva2:1082123
Available from: 2017-03-15 Created: 2017-03-15 Last updated: 2019-09-26Bibliographically approved
In thesis
1. Fears, Stress and Burnout in Parents of Children with Chronic Conditions: Treatment with Cognitive Behavioural Therapy and Mindfulness
Open this publication in new window or tab >>Fears, Stress and Burnout in Parents of Children with Chronic Conditions: Treatment with Cognitive Behavioural Therapy and Mindfulness
2017 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Long-term stress can lead to some form of chronic stress reaction. In study one, fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. Parents were offered either a CBT or a mindfulness programme. Both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, fears concerning future cancer recurrence and late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction.

Abstract [en]

The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions who suffer from fears, stress and burnout; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Research on parents of children with chronic conditions has shown that this parent group frequently suffers from psychological problems. Long-term stress can lead to some form of chronic stress reaction. In study one, parents of children with brain tumours were asked to rate the extent to which they experienced a set of specific fears related to their child’s brain tumour and its treatment. Fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. After a waiting list control period, parents were offered either a CBT or a mindfulness programme. After eight group therapy sessions, both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, many parents of children with chronic conditions suffer from stress-related mental illness and need targeted interventions for their own problems. The present research concludes that fears concerning future cancer recurrence and concerning late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction in parents of children with chronic conditions.

Place, publisher, year, edition, pages
Karlstads universitet, 2017. p. 88
Series
Karlstad University Studies, ISSN 1403-8099 ; 2017:19
Keywords
Parents of children with chronic conditions, mindfulness, CBT, stress, burnout, HRQoL, life satisfaction
National Category
Psychology
Research subject
Psychology
Identifiers
urn:nbn:se:kau:diva-48462 (URN)978-91-7063-779-7 (ISBN)978-91-7063-780-3 (ISBN)
Public defence
2017-06-13, 9C203, Nyquistsalen, 10:15 (Swedish)
Opponent
Supervisors
Available from: 2017-05-23 Created: 2017-05-03 Last updated: 2018-02-26Bibliographically approved

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