Family‐oriented services in pediatric rehabilitation: a scoping review and framework to promote parent and family wellness

Abstract

Family-oriented services are not as common as one would expect, given the widespread endorsement of family-centred care, the role of parents in supporting optimal child outcomes, and legislation and literature indicating that parent outcomes are important in their own right. There are no published service delivery frameworks describing the scope of services that could be delivered to promote parent and family wellness. A scoping review was conducted to identify types of family-oriented services for parents of children with physical disabilities and/or intellectual impairments. This information was then synthesized into a conceptual framework of services to inform service selection and design. A scoping review of the recent literature was performed to capture descriptions of services targeting parents/families of children with physical disabilities and/or intellectual impairments, published in a six-year period (2009 to 2014). Six databases were searched and 557 retrieved articles were screened using inclusion and exclusion criteria. Thirty six relevant articles were identified. Based on descriptions of services in these articles, along with seminal articles describing the nature of desirable services, we propose a needs-based and capacity-enhancing framework outlining a continuum of family-oriented services for parents of children with disabilities. The framework includes six types of services to meet parent/family needs, organized as a continuum from fundamental information/education services, to those supporting parents to deliver services to meet their child's needs, to a variety of services addressing parents' own needs (support groups, psychosocial services and service coordination). The framework provides pediatric rehabilitation service organizations with a way to consider different possible family-oriented services. Implications include the particular importance of providing information resources, support groups and psychosocial services to meet parents' needs, enhance capacity and promote family wellness. There is also an opportunity to provide composite parent-child services to address the needs of both parents and children.

Quality of goal setting in pediatric rehabilitation—A SMART approach

“…The scales served not only as an obvious way to observe each small step towards the goal but also as a plan for how to practice to reach the goal. Experienced clinicians could identify the possibilities to reach the goal and could eliminate obstacles and motivate people in the child's environment (G. King et al, ; M. C. Law et al, ; Lowing et al, ). Hypothetically, these factors could have supported the rather high total goal attainment, which was above the expected level, a result that complies with other studies (Lowing et al, ; Ostensjo, Oien, & Fallang, ; Vroland‐Nordstrand et al, ).…”

“…Over the past two decades, rehabilitation interventions for children with disabilities have gradually shifted focus and now emphasize the children's possibilities to participate in everyday activities rather than focusing primarily on reducing basic impairments (Brogren & Lowing, ; M. Law & Darrah, ; Novak et al, ). This approach involves both the family and child in order to identify which activities are meaningful in their current life situation, and it complies with a family‐centered service (G. King, Williams, & Hahn Goldberg, ). This has resulted in a stronger focus on goals being linked to functionally based interventions in the context of the child's day‐to‐day environment, and setting activity goals has become a core component in the rehabilitation process (Bovend'Eerdt, Botell, & Wade, ; Derick, ; Playford, Richard, William, & Jennifer, ).…”

“…Law & Darrah, 2014;Novak et al, 2013). This approach involves both the family and child in order to identify which activities are meaningful in their current life situation, and it complies with a family-centered service (G. King, Williams, & Hahn Goldberg, 2017).…”

Processus d’une recherche-développement réalisée avec des parties prenantes pour favoriser l’accès à l’information sur les services qu’ils reçoivent

“…L'importance de donner de l'information sur les services a été relevée dans de nombreuses études (Chinn & Homeyard, 2017;King, Williams & Hahn-Goldberg, 2017;Mitchell & Sloper, 2002;Samuel, Hobden, Leroy & Lacey, 2012). Être informé correspond à un besoin identifié par les parents qui reçoivent des services pour leur enfant (Leblanc, Robert & Boyer, 2013).…”

“…Être informé correspond à un besoin identifié par les parents qui reçoivent des services pour leur enfant (Leblanc, Robert & Boyer, 2013). L'information constitue un besoin fondamental (King et al, 2017). Or, malgré la volonté des organisations de bien informer leurs utilisateurs, il semble que l'information sur les services est souvent obtenue de façon informelle ou par l'entremise des autres familles ou des amis, plutôt que par les professionnels de l'organisation (Girard, Miron & Couture, 2014;O'Reilly, Karim & Lester, 2014;Redmond & Richardson, 2003;Samuel et al, 2012), et parfois, les informations sont acquises par hasard, sans démarche systématique de la part des organisations qui les desservent (Hayles, Harvey, Plummer & Jones, 2015).…”