Supporting parents of youths with intellectual disabilities and psychopathology

• Published in: Journal of intellectual disability research Vol. 50; no. 8; pp. 570 - 581
• Main Authors: Douma, J. C. H., Dekker, M. C., Koot, H. M.
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01.08.2006; Blackwell Publishing; Wiley Subscription Services, Inc
• Subjects: Adolescent; Adolescents; Affective Symptoms - psychology; Anxiety; Behavior Disorders; Child; Child Behavior Disorders - psychology; Child Rearing; Children; Children with disabilities; Coping; Counseling; Developmental disabilities; Disabled Children - psychology; Education; Education of Intellectually Disabled; Emotional Disturbances; Female; Health Services Needs and Demand; Humans; Intellectual Disability; Intellectual Disability - psychology; Longitudinal Studies; Male; Mental disorders; Mental Health; Mental Health Services; Mental Retardation; need for help; Netherlands; Parent Attitudes; Parent Counseling; Parents; Parents & parenting; Parents - psychology; Psychopathology; Respite Care; Social Support; Social Support Groups; Stress; Stress Variables; Stress, Psychological - complications; support; Netherlands; United Kingdom > UK; England; London England
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2006.00825.x

Background  Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. Method  In a sample of 745 youths (aged 10–24 years) with moderate to borderline ID, 289 parents perceived emotional and/or behavioural problems in their child. They were asked about their needs for support and whether these needs were met. Logistic regression analysis revealed the variables associated with both needing and receiving specific types of support. In addition, we asked those parents who had refrained from seeking support about their reasons. Results  Most parents (88.2%) needed some supports, especially a friendly ear, respite care, child mental health care and information. Parents who perceived both emotional and behavioural problems in their child needed support the most. In addition, parents whose child had any of these problems before the past year, who worried most about their child and suffered from psychopathology themselves, more often needed support. Parents of children with moderate ID or physical problems especially needed ‘relief care’, that is, respite care, activities for the child and practical/material help. The need for a friendly ear was met most often (75.3%), whereas the need for parental counselling was met least often (35.5%). Not receiving support despite having a need for it was primarily related to the level of need. Parents who indicated to have a stronger need for support received support more often than parents who had a relatively low need for support. The parents’ main reasons for not seeking support concerned their evaluation of their child’s problems (not so serious or temporary), not knowing where to find support or wanting to solve the problems themselves first. Conclusions  Most parents had various support needs that were frequently unmet. Service providers should especially aim at providing information, activities, child mental health care and parental counselling. Furthermore, parents need to be informed about where and how they can obtain what kind of support. A case manager can be of help in this.