Models of service support for parents of disabled children. What do we know? What do we need to know?

Abstract

Research carried out over a number of years provides a consistent picture of the experiences and needs of parents of disabled children. Recent studies, based on models of stress and coping, have identified factors which relate to high or low levels of parental distress. Whilst this research can provide useful information for service development, there appears to have been little change over the years in parents' reports of unmet need. It is clear that parental need covers a wide range of aspects of family life and holistic models of service support are required. Although evaluation studies which identify models of services that can change this situation are few, there are positive examples of models of support. The paper reviews the findings of such evaluation and identifies a number of important characteristics of effective service models.

SWOT analysis of a pediatric rehabilitation programme: A participatory evaluation fostering quality improvement

“…Perceived weaknesses of the PRP are also reported as important issues for families and often lacking in rehabilitation programmes (e.g. accessibility to services [1][2][3][4][5] and psychosocial support [1,6,30,31]). With regards to opportunities, community partnerships are advocated as an essential component of rehabilitation programmes in order to foster children's social participation [7,27,32,33].…”

Aquatic therapy for children with Duchenne muscular dystrophy: a pilot feasibility randomised controlled trial and mixed-methods process evaluation

“…64,[195][196][197] It is also well established that services are often fragmented, that intra-agency service planning is poor and that professionals, as well as families, are confused about provision. 195,197,198 The obstacles to accessing services (see Figure 3) were in evidence, as in other studies, and parents had to 'fight for everything', 199 and relationships with providers are described as 'repeatedly asymmetrical, non-collaborative, and negative': [199][200][201][202] I've had to fight . .…”

Evaluation of group counseling for families of intellectual disabled children

“…[6] Diğer yandan Sloper (1999) derlemesinde engelli çocuğa sahip ailelere için sosyal desteğin önemli olduğunu vurgulanmıştır. [21] Weiss'in (2002) yaptığı çalışmada; sosyal destek algısı yüksek olan annelerin benlik saygısının da yüksek olduğu, daha az depresif oldukları ve daha az stres yaşadıklarını bildirmektedir. [22] Bununla birlikte Yıldırım ve Conk'un (2005) yaptığı çalışmada, zihinsel yetersizliği olan çocuğa sahip anne babalarda planlı eğitimin "Sosyal Destek Arama" puan ortalamalarını istatistiksel olarak anlamlı düzeyde yükseltmediği bulunmuştur.…”

“…Benzer danışmanlık programlarında da beklenti katılımcıların sosyal destek algılarının yükselttiği yönündedir. [6,21,22] …”