Analysing family service needs of typically underserved families in the USA

Abstract

Findings underscore the need for resources to empower families and the value of using the FQOLS-2006 to ascertain the service support needs and strengths of families.

Understanding Resource Needs of Persons with Dementia and Their Caregivers

“…Lack of awareness is one of the main barriers that family caregivers face in accessing support services, similar to past studies on families of persons with developmental disabilities (Burnette, 1999;Kalyanpur & Rao, 1991;Samuel, Hobden, LeRoy & Lacey, 2012).…”

Impact of Grandchild Caregiving on African American Grandparents

“…A closer analysis of the participants’ descriptions of these problems, however, indicates that most were not able to describe or state their grandchild’s diagnosis or type of disability. In the case of autism spectrum disorders (ASD), for example, only 5 (1.34%) of the 372 grandparents who responded to the open-ended question designed to elicit data on the grandchild’s diagnosis reported that at least one of their grandchildren had an ASD, in contrast to research based on convenience samples from metro Detroit that have indicated a higher parent-reported incidence of ASD (Samuel et al, 2011 & 2012). National and state-level data also indicate that ASD is the fastest growing developmental disability, resulting in long waits to obtain services (Boyle et al, 2011; Jones et al, 2016; Michigan ASD State Plan, 2012).…”

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).…”

“…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).…”