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Parents' Perceptions of Their Child's Symptom Burden During and After Cancer Treatment
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. (Barnonkologisk forskning/Pfeifer)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatrics. (Barnonkologisk forskning/Pfeifer)
2013 (English)In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 3, 366-375 p.Article in journal (Refereed) Published
Abstract [en]

Context

Parents’ perceptions of their child’s symptom burden during and after cancer treatment.

Objectives

The aim is to describe parents’ perceptions of their child’s symptom burden during and after cancer treatment and to investigate whether parents’ perceptions vary with child characteristics and parent gender.

Methods

160 parents (49% fathers) of 89 children answered a modified version of the Memorial Assessment Symptom Scale (MSAS) 10-18 at six assessments from one week after the child’s diagnosis (T1) to 12-18 months after the end of successful treatment (T6).

Results

Feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms, and less hair than usual the most prevalent symptom during treatment. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout treatment. The child’s symptom burden decreases over time. There is no difference with regard to reported symptom burden between parents of a daughter or a son, or parents of a child over or under 7 years of age. Mothers’ and fathers’ assessments of the symptom number, total MSAS, and the subscales are associated, but mothers’ assessments are often higher than fathers’.

Conclusion

The prevalence and distress of symptoms and symptom burden decrease over time. However, even though the cancer is cured, feeling sad is reported as being prevalent and psychological distress is an issue. A dialogue between staff and the family about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during the disease trajectory.

Place, publisher, year, edition, pages
2013. Vol. 46, no 3, 366-375 p.
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:uu:diva-172337DOI: 10.1016/j.jpainsymman.2012.09.012ISI: 000324026700006PubMedID: 23498966OAI: oai:DiVA.org:uu-172337DiVA: diva2:514642
Available from: 2012-04-10 Created: 2012-04-04 Last updated: 2017-12-07Bibliographically approved
In thesis
1. Distressing Symptoms in Children with Cancer in General; During Needle Procedures in Particular
Open this publication in new window or tab >>Distressing Symptoms in Children with Cancer in General; During Needle Procedures in Particular
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The main aims of this thesis were to investigate the effect of distraction, midazolam and morphine on fear, distress, and pain during needle procedures, and to longitudinally describe parents’ perceptions of their children’s symptom burden during and after cancer treatment.

The design in Study I-III was that of a randomized controlled trial (RCT) conducted in a medical setting; Studies II-III were placebo controlled. Study IV has a longitudinal design, and data were collected at three times during treatment and three times after the end of successful treatment. Participants in Study I were children aged 1 to 7 (n=28), in Study II children aged 1 to 19 (n=50), in Study III children aged 1 to 19 (n=50), and in Study IV parents (n=160) of children aged 1 to 19.

Blowing soap bubbles or having a heated pillow reduces children’s fear and distress in connection with needle procedures. Low-dose oral midazolam 0.3mg/kg body weight is effective in reducing fear and distress, especially in younger children. Interestingly, oral morphine at a dose of 0.25mg/kg body weight does not reduce fear, distress or pain.

These studies have evaluated interventions that may be of help for the most frightened children during needle procedures. We suggest that the first-line intervention against procedural fear, distress, and/or pain should be standard care (i.e. EMLA) in addition to distraction interventions when needed, and only when this is insufficient to add pharmacological interventions.

According to parents, feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms in their children, whereas less hair than usual is the most prevalent symptom during treatment. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout treatment. The child’s symptom burden, as reported by parents, decreases over time. Information about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during and after cancer treatment.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2012. 59 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 772
Keyword
Childhood cancer, pain, RCT, symptoms
National Category
Pediatrics
Research subject
Pediatrics
Identifiers
urn:nbn:se:uu:diva-172905 (URN)978-91-554-8358-6 (ISBN)
Public defence
2012-06-02, Rosénsalen, Ingång 95-96 NBV, Akademiska barnsjukhuset, Uppsala, 09:15 (Swedish)
Opponent
Supervisors
Available from: 2012-05-10 Created: 2012-04-17 Last updated: 2012-08-01Bibliographically approved

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Hedén, LenaPöder, Ulrikavon Essen, LouiseLjungman, Gustaf

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