Early Intervention in Children (0–6 Years) with a Rare Developmental Disability: The Occupational Therapy Role

Abstract

Objective/Background This study aims to explore the occupational therapists’ role in early intervention for children diagnosed with a rare developmental disability. Methods A survey was distributed by mail or online, to eligible occupational therapists currently used by the Disability and Community Care Services throughout Queensland, Australia. Eligible occupational therapists were those working with children aged 0–6 years. Two in-depth phone interviews were also undertaken. Results Eleven participants who had previously worked with at least one child with a rare developmental disability returned the survey. One participant nominated for a follow-up interview and a second interview with a speech and language pathologist was conducted to gain a multidisciplinary perspective. The most common areas requiring intervention were play support (85.3%), activities of daily living, communication, gross motor, and fine motor skills (79.4%). Conclusion Family-centred practice, play therapy, and individually tailored programmes are identified as key practice areas for this population. The important role occupational therapists play in early intervention teams is highlighted; however, further research is needed to develop the evidence base for best practice with particular rare developmental conditions.

Effects of a family-centered workshop for children with developmental delays

“…[ 12 ] However, only 10% of potentially eligible children receive early intervention services [ 1 ] because of various family- and practice-level barriers. [ 13 ] Such barriers prevent young children with developmental delays from receiving appropriate services during this critical period and include failures to address the needs of children and their families, [ 13 ] resource limitations such as therapist time [ 14 ] and therapy dosage, [ 15 ] and service provision (e.g., urban and rural disparities in specialization and access to therapy services). [ 15 ] Ensuring an adequate number of therapy sessions is vital for parents of children requiring early developmental interventions.…”

Family‐centred care in early intervention: A systematic review of the processes and outcomes of family‐centred care and impacting factors

“…Consistent with the conceptualization of FCC outlined by Dunst and Trivette (1996) and Dunst et al (2006, 2007), the themes of participatory caregiving and relational caregiving were extracted as key facets of FCC. In line with the conceptual literature, participatory caregiving involved ‘engaging with families’ (Dall'Alba et al, 2014), ‘collaborative consultation’ through the formation of an ‘equal and partnering relationship’ (García‐Grau et al, 2019) and the involvement of the family in key processes such as decision making (Dall'Alba et al, 2014). Relational caregiving was defined by ‘good’ clinical skills such as being flexible, demonstrating ‘interpersonal sensitivity’ and ‘respect’ (Pickering & Busse, 2010) and adopting a ‘reciprocal and collegial approach’ (Carter & Thomas, 2011).…”

“…Imparting specific information originated from explicit information needs reported such as financial advice (Pickering & Busse, 2010), medical information (Ideishi et al, 2010), information on services in the charity/private sector and information following diagnosis (Robinshaw & Evans, 2001), amongst others. Family education and skills development also represents a more complex presentation of general and specific information provision in FCC through documenting not just parent teaching practices such as modelling (Dall'Alba et al, 2014), direct teaching (Leiter, 2004) and family coaching (Hwang et al, 2013), but professionals' and parents' unique roles in the transfer of information and skills. Through imparting specific information , family members are conceptualized as passive recipients of professionals' expertise and knowledge through the process of information provision.…”

“…Service operations and resources was the most frequent theme, accounting for factors such as the endorsement and ‘formation of quality teams’ at the service level (Ely & Ostrosky, 2018), the ‘frequency of professional contact with family’ (Wilkins et al, 2010), ‘administrative’ difficulties (Mahoney & O'Sullivan, 1990), service coordination (Fordham et al, 2012) and time constraints (Douglas et al, 2020), amongst other variables. This was related to the theme of service location and logistics , which included the ‘distance between child and therapy’ (Dall'Alba et al, 2014), the distance between team members (Brotherson et al, 1993), and service delivery settings such as home‐ versus clinic‐based service delivery (Ridgley et al, 2020) and EI provided in education settings (Ueda & Yonemoto, 2020). This therefore accounted for the significance of context in the effective delivery of FCC.…”

Ergotherapy: A Job Field That Can Be The Job of Future

“…-0-6 yaþ arasý geliþimsel bozukluðu olan çocuklarda ergoterapinin etkinliðinin araþtýrýldýðý bir çalýþma-da ergoterapinin özellikle oyun desteði, günlük yaþam aktivitelerinin sürdürülmesi, iletiþim, kaba ve ince motor hareketlerde etkili olabileceði öne sürülmüþtür (22).…”