Psychosocial difficulties parents of young children with severe disabilities face

PSYCHOSOCIAL DIFFICULTIES THAT PARENTS of YOUNG CHILDREN WITH SEVERE DISABILITIES MAY COPE WITH DURING THEIR CHILD'S EARLY YEARS

It is likely that parenting is one of the most demanding roles that an individual will play during their lifespan and how much more so for parents of children with severe disabilities. The child with severe disabilities requires much more hands-on care throughout their life than do other children. Added to this is the psychological and psychosocial adjustment of the child and whether the child is well-adjusted or if they are characterized by very challenging behavior.

ISOLATION COMMON AMONG PARENTS of CHILDREN WITH DISABILITIES

Children With Special Needs: Social Isolation of Children and Families" states that a study conducted in the state of Minnesota shows that students with special health care needs "are much more likely to be dissatisfied with their personal lives..." At a rate of 29%. The rate of their same aged peers in this group is much lower at 17.1%. Parents of children with severe disabilities or challenging behavior "may become isolated from family and social networks much earlier in their lives, because of their all-pervasive caring role. In later years their isolation may thus be even greater." (Minnesota Title V MCH Needs Assessment Fact Sheets, 2004) This study further shows that parents caring for children who were young adults who had severe intellectual disabilities and challenging behavior "...revealed that at this stage very few had frequent or close contact with family outside the household, or with friends." (Minnesota Title V MCH Needs Assessment Fact Sheets, 2004) Furthermore, in this case, the parents were not involved in any social network actively and due to this isolation, they "have less and less in common with friends and relatives who have children of the same age." (Minnesota Title V MCH Needs Assessment Fact Sheets, 2004) the Minnesota report states that studies in this area "have documented increased psychological risk among parents."(Minnesota Title V MCH Needs Assessment Fact Sheets, 2005) Secondary health conditions are cited in the Minnesota study including: "depression, psychological distress and declines in physical health" which result from "the increased financial strain, uncertainty about the future, social isolation, and fatigue" which are stated be associated to meeting the special needs of the child who is severely disabled.

II. REVIEW of META-ANALYSIS RELATING to PARENTAL STRESS and SUPPORTS

The work of Vermaes, Janssens, Bosman and Gerris entitled: "Parent's Psychosocial Adjustment in Families of Children with Spina Bifida: A Meta-Analysis" published ion August 2005 reports that "little is known about the impact of SB on family adjustment. Reviewers have struggled to synthesize the few contradictory studies available." (2005) Vermaes, Janssens, Bosman and Gerris states that their study was conducted in a systematic review through a meta-analysis through delimitation of the scope of review to one concept of family adjustment and specifically the psychosocial adjustment of parents of children with Spina Bifida. Spina Bifida, "the second most common congenital birth defect...worldwide" is reported to have a "negative medium-large effect on parents' psychological adjustment. (Vermaes, Janssens, Bosman and Gerris, 2005) This study is stated to have shown that most of the studies under review in the meta-analysis were lacking in terms of a comparison group in the study design. The results are stated to confirm the hypothesis "that the presence of SB in families predicts higher levels of psychological strain in parents." (Vermaes, Janssens, Bosman and Gerris, 2005)the variability in psychological adjustment of parents of children with SB is stated to have been expected "to be associated with child, parent, family and environment factors." (Vermaes, Janssens, Bosman and Gerris, 2005) the work of Vermaes, Janssens Bosman and Gerris (2005) is one, which examines the categories of factors that are associated with disability of a child and specifically of the family, community or social support mechanisms, and the environment. This study further demonstrated that the parents who actively sought social support were more likely to receive social support in dealing with the issue of having a child who is severely disabled. Family income was positively associated to the psychosocial adjustment of the parents in this study as was having a marital partner. It is likely that this is due to having the necessary resources to hire additional help to assist the parent with the child as well as having private transportation and other bonuses that go along with a good steady income and the activities that are required in resource-seeking and receiving medical care for a severely disabled child. Additionally the level of cognition of the parent was found to be a factor positively associated with the parents' psychological adjustment. A supportive family environment was also found to be positively associated with the parents' psychological adjustment in the study of Vermaes, Janssens, Bosman and Gerris (2005) and environmental factors that were positively associated with the parent being well-adjusted psychologically were those of: (1) positive support from the community; and (2) satisfaction with the level of support provided within the community. This study reports that no association was found between the severity of the disability in the case of Spina Bifida in this study except in the study of Kronenberger and Thompson which was reviewed and which included children with milder forms of SB. Specifically stated is: "Another explanation may be that indexes of the severity of SB have not been conceptualized in a consistent way. Some studies used indicators of physical impairments only, others added functional limitations (e.g., the degree of mobility), and/or indicators of treatment intensity. Conceptual refinement of SB-parameters and treatment will be needed to more effectively investigate which factors cause stress in parents and which do not. Theoretically, the marginality hypothesis may further explain why a linear relationship between SB parameters and parents' psychological functioning was barely found. This theory holds that children with minor disabilities tend to exhibit more psychosocial problems than severely impaired children do because they have difficulties identifying themselves with either able-bodied or disabled peers. Similar identification problems could arise for parents of marginally disabled children with SB." (Vermaes, Janssens, Bosman and Gerris, 2005) Vermaes, Janssens, Bosman and Gerris (2005) note that the parental factors of "appraisals and coping styles" have been hardly studied and that "this is remarkable, since the role of appraisal and coping are of central importance to understanding how stressful events affect people. The scarce findings suggest that parents' appraisals and coping styles are highly predictive of positive as well as negative adjustment." (Vermaes, Janssens, Bosman and Gerris, 2005) This work also relates that as was expected, "parents' psychological health was consistently associated with a supportive family environment." (Vermaes, Janssens, Bosman and Gerris, 2005) Finally, the marital relationship quality also was found to be a "promising correlate of psychological bonadjustment." (Vermaes, Janssens, Bosman and Gerris, 2005) Finally, in the association of positive psychosocial adjustment of parents' in this study was found to be linked to the parent having: "a large informal social network of family and friends that match parents' needs, enhances parents' psychological adjustment..." (Vermaes, Janssens, Bosman and Gerris, 2005)