ABSTRACT
OBJECTIVE: Parents of children with cancer are at risk for developing psychosocial problems. The present study aims to evaluate the effect of an online group intervention (Op Koers Online, in English: On Track Online) on psychosocial wellbeing and coping skills. METHODS: Parents of a child with cancer (diagnosis <5 years ago) participated in a randomized controlled trial. In six consecutive (and one booster-) protocolled sessions in an online chatroom, trained psychologists and social workers taught coping skills using cognitive behavioral and acceptance and commitment techniques. Questionnaires assessed anxiety, depression, distress, situation-specific emotional reactions and coping skills (Op Koers Questionnaire/Cognitive Coping Strategies Scale Parent Form) and evaluated the intervention. Linear mixed-model analyses were performed to detect differences between the conditions in changes over time; T0-T1 and T0-T2 (6-week and 6-month follow-up), and to detect changes in scores T2-T3 (12-month follow-up) for the intervention group only. RESULTS: 89 parents were included in analyses (mean age 41.9 years, 86% female, 62%/38% post/during treatment of their child). Beneficial intervention effects (p < 0.05) were found at T1 for anxiety, depression, distress, loneliness and relaxation, and at T2 for anxiety, uncertainty and relaxation. In the intervention condition, scores did not change from T2 to T3, except loneliness that decreased and relaxation that improved. All effect sizes were small to medium (ß = -0.21 to 0.46). Parents were generally positive about the intervention. CONCLUSIONS: Op Koers Online for parents of children with cancer has a positive effect on psychosocial wellbeing and the coping skill relaxation. Implementation is recommended to prevent psychosocial problems. CLINICAL TRIAL REGISTRATION: Dutch Trial Register https://onderzoekmetmensen.nl/en NL73763.041.20.
Subject(s)
Neoplasms , Parents , Child , Humans , Female , Adult , Male , Parents/psychology , Stress, Psychological/therapy , Stress, Psychological/psychology , Anxiety/therapy , Coping Skills , Neoplasms/therapy , Neoplasms/psychologyABSTRACT
BACKGROUND: Siblings of children and adolescents with a chronic condition are at risk for developing psychosocial problems. It is important, that they receive appropriate support according to their needs. A sibling-specific module of an existing online intervention (Op Koers Online) for adolescents with a chronic condition might be an appropriate way to offer psychosocial support to siblings. The aim of the current study is to identify siblings' online support needs in order to develop a sibling-specific module of the existing Op Koers Online intervention. RESULTS: A total of 91 siblings (mean age 15.2 years, Standard Deviation 2.7) of children with a chronic condition completed an online questionnaire; nine semi-structured interviews were held additionally. Of all participants, 55% would like to initiate or increase contact with other siblings of children with a chronic condition and 46% of those were interested in an online chat course. The themes for online support considered most important were impact on daily life, worrying about brother's/sister's future, handling other people's reactions, and how attention is divided within the family. CONCLUSIONS: Siblings are interested in peer contact and online support. Op Koers Online for siblings seems to be a suitable intervention to offer online psychosocial support. The next step is to develop a sibling specific module of the Op Koers Online course, taking into account the identified themes.
ABSTRACT
BACKGROUND: This study assesses health-related quality of life (HRQOL), and variables associated with HRQOL, in children and adolescents with haemophilia and congenital bleeding disorders (CBD) in the Netherlands. METHODS: Patients <18 years with CBD under treatment at the Hemophilia Comprehensive Care Center of the Academic Medical Center were included. Participants completed generic HRQOL questionnaires (TAPQOL 0-5 years; PedsQL 6-18 years). Differences and effect sizes in HRQOL compared to healthy peers, and between hemophilia severity groups, were tested using Mann Whitney U-tests. Multivariate regression analyses were performed to assess variables associated with HRQOL. RESULTS: Data of 145 patients (81%) were analyzed (N = 32 with severe haemophilia). Children (0-12 years) show no significant impairments in HRQOL compared to healthy peers. Adolescent boys (13-18 years) with CBD report a slightly higher HRQOL on the total and emotional functioning scales than healthy peers (small-moderate effect sizes). In contrast, adolescent girls experience lower HRQOL on total, social functioning and psychosocial health scales compared to healthy peers (moderate effect sizes). No differences between severity groups were found in HRQOL, but more problem behaviour was found in young boys (0-5 years) with severe haemophilia. Male gender, participation in sports and school attendance are positively associated with HRQOL. Parental country of birth, type of treatment and number of bleeds are not associated with HRQOL. CONCLUSION: Continuing monitoring HRQOL in daily clinical practice for children with CBD is important, since possible influencing psychosocial factors can change over time, with special focus on adolescent girls, sports participation and school absence.
