04 SES 03 D, What You See Is Not What You Get: Disability Revisited
Scientific literature has emphasized that changes and needs relating to the education of children and young people with disability can affect the entire family system (Felizardo, Ribeiro & Amante, 2016). Parents or caregivers seem to experience higher levels of global stress compared to caregivers of children without disability, particularly with regard to child domain stress, constituting situations of increased risk to develop disorders on subjective well-being and mental health (Benson & Karloff, 2009; Felizardo, 2016; Gupta & Singhal, 2004; Heiman, 2002). In the same vein, Simeonsson (2000) argues that these families feel complex, momentary or continuous needs in terms of information, social support, as well as explanatory needs to provide to others, community services, financial conjunctures and, still, of the functioning of the family. The caregivers present a greater need for information regarding the child's growth and development, interaction, play, communication with them, as well as information needs about the learning/teaching processes or even how to deal with the child's behavior (McWilliam, 2012; Verma & Kishore, 2009). Studies of Heiman (2002) on resilient families of children with disabilities stressed the importance of social resources and the effects of various types of support in response to family needs. These results lead us to the importance of rethinking the ways and formats of intervention in this field, particularly as regards the type of support to provide, and should be more suited to family’s needs and resources (Felizardo, 2013, 2016).
The present study was developed with the purpose of evaluating the needs of families with children with disability that receive specialized support respectively: in a Hospital’s pediatric Service (Hps), and in the Portuguese Association for Development and Autism Disorders’ (PADAD) delegation with the objective of optimizing their services.
The study’s exploratory nature had the 52 participants (30 parents from Hps and 22 parents of PADAD delegation). The instruments used were: a sociodemographic questionnaire and the Family Needs Survey adapted from the original version (Bailey & Simeonson, 1988; Bailey, Blasco, & Simeonson, 1992).
The results reveals that, in general, the most felt needs of the respondents are in the area of information about the child's problems, followed by the needs of social and family support. We also highlight the need for parents to meet and talk to other parents of other children with similar problems and experiences. There were statistically significant differences in parental needs, as a function of the following variables: child's diagnosis, severity of impairment, marital status and socioeconomic level. The data also suggests the need of programs focused in children’s problematic area, and investment in formal and informal support network, as a way of improving the family functioning. As McWilliam (2012) refers, formal and informal support helps parents move beyond the various stages of child development, with the exchange of informal experiences from other parents and friends, as well as the formal support provided by professionals and services. The literature emphasizes that contact with other parents promotes the learning of new techniques and strategies, thus developing a greater trust and sense of competence. In this framework, intervention programs should include ways to support the adaptation of families, seeing them as the most important context of child development, and we should have special attention. Thus, the measures and actions should include topics at the level of information about the specific issues, as well as on issues related to learning and behavior control. This work could be developed in the family therapy contexts, but it is particularly important the social support provided by parents groups, especially in the early stages of adjustment to disability (Gupta & Singhal, 2004, Felizardo, Ribeiro & Amante, 2016).
Benson, P.R. & Karlof, K.L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal. Autism Dev. Disord., 39, 350-362. Dunst, C. J., Boyd, K., Trivette, C. M., & Hamby, D. W. (2002). Family-oriented program models and professional helpgiving practices. Family Relations, 51, 221–229. Felizardo, S. (2016). Parental functioning and social support in families of children with autism spectrum disorders. Atención Primaria, 48 Supl C, 48. ISSN: 0212-6567. Felizardo, S. A., Ribeiro, E., & Amante, M. J. (2016). Parental adjustment to disability, stress indicators and the influence of social support. Procedia – Social and Behavioral Sciences, 217C, 830-837. doi: 10.1016/j.sbspro.2016.02.157. Guralnick M. J. (2004). Family investments in response to the developmental challenges of young children with disabilities. In A. Kalil & T. Deleire (Eds.), Family Investments in Children’s Potential: Resources and Parenting Behaviors that Promote Success (pp. 119–137). Lawrence Erlbaum, Mahwah, NJ. Gupta, A. & Singhal, N. (2004). Positive perceptions in parents of children with disabilities. Asia Pacific Disability Rehabilitation Journal, 15 (1), 22-35. Heiman, T. (2002). Parents of children with disabilities: Resilience, coping and future expectations. Journal of Developmental and Physical Disabilities, 14 (2), 159-171. McWilliam, R. (2012). Implementing and preparing for home visits. Topics in Early Childhood Special Education, 31(4), 224–231. Simeonsson, R. J. (2000). Early Childhood Intervention: Toward a Universal Manifesto. Infants and Young Children, 12, 4–9. Verma, R. K. & Kishore, M. T. (2009). Needs of Indian parents having children with intellectual disability. International Journal of Rehabilitation Research, 32 (1), 71-76.
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