Recognizing the role of parents in developmental outcomes: A systems approach to evaluating the child with developmental disabilities

Abstract

When developmental concerns arise in children, a clinical assessment focuses on the child's developmental profile to achieve three goals (1) determine diagnosis, (2) develop interventions, and (3) evaluate progress. Parents often have needs during this time that are not addressed by professionals because of the exclusive focus on the child during the evaluation. In this article, we suggest that clinicians take a "systems" approach to the assessment process by recognizing how the well being of family members can impact a child with a developmental disability. We review systems theory and its conceptualization of individual functioning and discuss how parental well-being differs according to child diagnosis. Finally we suggest a systems-based model to use during the assessment process.

Maternal parenting stress in families with a child with Angelman syndrome or Prader–Willi syndrome

“…Parents with a child with intellectual disability exhibit elevated levels of parenting stress, which tends to be chronic (Hassall & Rose, 2005;Hastings & Beck, 2004;Hatton & Emerson, 2003;Head & Abbeduto, 2007;Olsson, 2008). High levels of parenting stress can have severe implications, such as harsh or withdrawn parenting, and distressed parents are less likely to optimise the child's development (Deater-Deckard, 2004).…”

<b>Stress in Parents of Children and Adolescents with Down Syndrome</b>

“…Já na adolescência é preciso estimular o autoconhecimento, a capacidade de escolha, a aceitação de limites, a autonomia, a preparação para o trabalho e o exercício da sexualidade 4,5 . Cuidar de um filho com deficiência repercute em impacto no sistema familiar e pode gerar dificuldades na adaptação, além de estresse 6,7 . Por outro lado, esse cuidado pode impulsionar mudanças positivas, reestruturação e união familiar.…”

“…O Inventário de Sintomas de Estresse para Adultos de Lipp (ISSL) é um instrumento composto de múltiplas escolhas. Esse instrumento avalia se há estresse, em qual fase ele se encontra (alerta, resistência, quase exaustão e exaustão) e se predominam sintomas físicos ou psicológicos 7 .…”

Parental Perceptions Influencing the Utilization of Early Intervention Services in Children with Developmental Delay

“…Since taking care of a disabled child is an ongoing process, marked by changing needs with the growth of the child 12 , the acceptance of these services heavily relies on the caregivers, their wellbeing, their unique needs and challenges which must be acknowledged 13 .…”