The development and evaluation of a psychological intervention program for caregivers of childhood cancer in UKM Medical Centre (UKMMC)

Abstract

The prevalence of psychological distress among caregivers of children with Acute Lymphoblastic Leukemia (ALL) is well-documented. However, interventions to address this issue is in its infancy. Therefore, the main objective of this study was to develop a psychological intervention program to address the psychosocial needs of these caregivers. This study consisted of a needs assessment via semi-structured interview in Phase One, the development of a module and pilot testing in Phase Two and a two-arm, parallel, blinded randomised controlled trial of the improved intervention in Phase Three. Purposive sampling was employed across the phases to recruit caregivers of children with ALL, below 18 years old, six months post diagnosis with active hospital follow-up and fluent in Malay or English. The five main themes, analysed via NVivo 12, that emerged from 13 caregivers in Phase One highlighted caregiver’s emotional reaction towards the diagnosis, psychological, social and informational needs, inevitable lifestyle changes and spiritual coping unique to the Malaysian culture associated to their child’s illness. In Phase Two, a self-help intervention module was developed to address the psychosocial needs within the main themes. The two-week module consisted of chapters on illness-related information, effective communication, cognitive behavioural model, stress and coping, problem solving skills and resources for support. There were six caregivers and five subject matter experts who evaluated the module in Phase Two to be feasible (inter-rater reliability of 87.6%) and potentially effective in relieving psychological distress. This is reflected by participants’ symptomatic improvement on traumatic stress measured by the PTSD Checklist for DSM 5 (PCL-5), depression measured by the Beck Depression Inventory (BDI) and anxiety measured by the Beck Anxiety Inventory (BAI), although no statistical significance was achieved when analysed using paired sample t test on SPSS version 26. In Phase Three, 73 caregivers who were randomly assigned via sequentially, numbered, opaque, sealed envelope (SNOSE) (intervention, n=36; TAU control, n=37) reported a statistically significant difference in traumatic stress symptoms from baseline to post intervention (F(1, 57) = 5.760, p = 0.020, np2 = 0.093) in favour of the intervention group. No statistical significance was found for its effect at one-month follow-up, overall depression and anxiety. However, there was a close to medium effect size between both groups for depression and main effect for post traumatic stress symptoms (PTSS). In conclusion, a psychosocial module developed for caregivers of children with ALL focused on addressing unmet care needs was found acceptable and feasible as an intervention to improve symptoms of traumatic stress and depression. However, its effectiveness on anxiety requires further study. To enhance the delineation of intervention effects, future studies may consider screening for participants of high psychological distress to participate in the intervention, with an active control group.