Developing a Psychological Management Guideline for Parents of Children with Autism Spectrum Disorder

Abstract

Background: Autism Spectrum Disorders (ASDs), similar to other neuro-developmental disorders, are generally not curable and chronic management is required. It is more difficult for parents to understand and cope as it produces stress and anxiety in life-long care of these children. Therefore, a psychological management guideline needs to be developed in our cultural context. The study aimed to develop a psychological management guideline for parents of children with ASD in Bangladesh. In order to develop the guideline, parents psychological support needs were explored for these children. Participants: The study was conducted in 2 separate phases. In Phase one, 16 parents took part (mean age = 39.13 years; SD = 6.80 years) of children with ASD who were attending a special school in Dhaka, Bangladesh. In-depth interviews were conducted on 6 mothers and 10 parents (7 mothers and 3 fathers) in a focus group discussion (FGD). Mean age of the children during the study was 10.22 years (SD = 4.97 years). Two mothers were also working as special-teacher in the special school. In the second phase, feedbacks were taken from 8 experts and 5 parents to finalize the development of the psychological management guideline of ASD. Procedure: Using a topic guide, parents’ responses were collected regarding emotional and behavioural support needs in caring a child with ASD. The topic guide consisted of questions on understanding the diagnosis of autism, emotional reactions, experiences and so on. All participants completed intensive interviews, mostly conducted face-to-face and subsequently over phone. All interviews were digitally recorded, professionally transcribed and were analyzed following Interpretative phenomenological analysis (IPA) theory. Results: The results of the phase-1 are presented in terms of ten core overarching themes emerged from the qualitative data analysis: (1) Parents’ reactions to the diagnosis; (2) Understanding the consequences of the diagnosis; (3) Stress of raising a child with autism; (4) Concerns about core and secondary problems; (5) Anxiety about child’s future; (6) Parents’ sacrifices arising from caring the child; (7) Uncertainty about child’s future; (8) Parents feelings or prevailing mood; (9) Professional support needs, and (10) Support needs from the Government of Bangladesh. In the phase-2, a draft version of the psychological management guideline was developed based on in-depth interviews of parents. The guideline was then evaluated by 8 experts on autism. Final version of the psychological management guideline was developed after incorporating suggestions from 5 parents.