Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other?

Abstract

Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.

Home Care Technology Through an Ability Expectation Lens

“…At the same time, a number of researchers point out difficulties associated with participation by people with disabilities [39,44,45] including needs for adapting processes through which informed consent, as well as study-topic related needs and preferences, are provided by participants. We refer readers to resources created to facilitate such adapted processes including Alberta Human Services, Adult Guardianship and Trusteeship Act (AGTA), which details guidelines for supporting adults who need assistance with decision making, and the Law Commission of Ontario, which provides a recent (2014) collection of commissioned papers pertaining to capacity, decision-making, and guardianship.…”

Quality Group Home Care for Adults with Developmental Disabilities and/or Mental Health Disorders: Yearning for Understanding, Security and Freedom

“…The impact of staff approach is evidenced by Abbott & McConkey () who report that adults with developmental disabilities felt restricted in social inclusion opportunities when they perceived staff members to be treating them in childlike, or otherwise disrespectful, fashion. Correspondingly, Mooney & Lashewicz (), who conducted a series of focus groups with family members of adults with developmental disabilities and/or mental health disorders, presented family member reports of constraints to social inclusion that arise when staff members are self‐focused or otherwise preoccupied away from facilitating social inclusion opportunities. The same focus groups of family members described restrictions to self‐determination for their family member with a developmental disability and/or mental health disorder that occur when staff members misread and mishandle interactions, and consequently provoke behaviour outbursts.…”

Family Involvement in Person-Centered Approaches for People with Intellectual Disabilities and Challenging Behaviors: A Scoping Review

“…Family members ordinarily wish to have continuing involvement in their relatives' lives after they have left their family home, as issues relating to their care remain deeply concerning to them (Bright et al, 2018). However, previous research has found that the collaboration between families and professionals may not always be straightforward (Bright et al, 2018;Mooney & Lashewicz, 2014;Redmond & Richardson, 2003;Ryan & Quinlan, 2018). Neither families nor professionals find it easy to develop collaborative relationships (Mooney & Lashewicz, 2014).…”

“…However, previous research has found that the collaboration between families and professionals may not always be straightforward (Bright et al, 2018;Mooney & Lashewicz, 2014;Redmond & Richardson, 2003;Ryan & Quinlan, 2018). Neither families nor professionals find it easy to develop collaborative relationships (Mooney & Lashewicz, 2014). The main barriers for families are poor communication, inadequate support and coordination, a lack of information and lack of child or family centeredness (e.g., a concern with individual needs instead of what a service offers; Redmond & Richardson, 2003;Ryan & Quinlan, 2018).…”

“…They indicate to sometimes struggle with families who can be demanding and others who seem uninvolved or hard to reach. Professionals can find it sometimes difficult to attune to the different priorities and styles of care and collaboration (John, 2020;Mooney & Lashewicz, 2014). Families are sometimes convinced that support staff may fall short or miss the mark in terms of their judgment and insight into individuals' needs, thereby even contributing to challenging behaviors (Mooney & Lashewicz, 2014).…”