Abstract
BackgroundParenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child’s cancer disease after end of treatment.ObjectiveOne aim of this study was to develop an internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention.MethodsParticipatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection.ResultsA 10-week, internet-administered, cognitive behavior therapy–based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in future studies testing and evaluating the intervention were discussed; consensus was not reached for all aspects.ConclusionsTo the best of our knowledge, this study is the first use of a participatory action research approach to develop a psychological intervention for parents of children previously treated for cancer and to identify acceptable study procedures. Involvement of parents with lived experience was vital in the development of a potentially relevant and acceptable intervention for this population.
Highlights
Introduction and organisationThis report contains information on all children with cancer diagnosed in Sweden between 1984 and 2010.Chapter 1 presents the childhood cancer organisation in Sweden including section, working groups, regional centres and the staff of the Childhood Cancer Epidemiology Research Unit at Karolinska Institutet which has been responsible for the report.we report the material and methods for collection of data and the statistical methods used in the analyses.The results are presented in chapter 3 with an initial survey of the three main diagnostic groups followed by analyses of the separate sub diagnoses in childhood cancer
Discussion childhood cancer represents less than 2% of human cancers, they are histologically very diverse and differs in types and distributions from those found in young and old adults [6]
The EUROCARE3 study has compiled data from populationbased cancer registries in 20 European countries [8, 9] and several papers containing the same type of information from 50000 children with cancer in 35 countries and was produced from Automated Childhood Cancer Information (ACCI) and appeared in Eur J Cancer in September 2006 [10, 11, 12]
Summary
Rapporten omfattar uppgifter på samtliga barn med cancer diagnostiserade i Sverige åren 1984 -2010. I kapitel 1 ges en presentation av nuvarande barnonkologiska organisation med sektion, arbetsgrupper, barnonkologiska centra och staben vid Barncancerepidemiologiska forskningsenheten vid Karolinska Institutet, som ansvarat för utgivningen av rapporten. Kapitel 2 redovisar materialet, metod för insamling av data samt de statistiska metoder som använts vid analyserna. Resultaten presenteras i kapitel 3 med primärt en översikt av de tre stora diagnosgrupperna (leukemier, solida tumörer och CNS- tumörer) följt av separata analyser för varje underdiagnos av barncancer. För att kunna presentera prognosutvecklingen inklusive tidsperioden innan uppgifter fanns i vår egen databas har data från Svenska Cancerregistret använts. I kapitel 4 diskuteras klassificering av sjukdomarna och prognosutvecklingen över tiden och resultaten i det aktuella materialet jämförs med andra internationella publicerade data. Publikationslistan omfattar internationella artiklar som helt eller delvis baseras på data från Svenska Barncancerregistret.
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