Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other? Laura R. Mooney MSc and Bonnie Lashewicz PhD Community Health Sciences, Faculty of Medicine, University of Calgary, Calgary, Alberta, Canada Accepted for publication 8 August 2013 Correspondence Bonnie Lashewicz Community Health Sciences, Faculty of Medicine University of Calgary Room 3D20, TRW Building, 3280 Hospital Drive NW Calgary, Alberta, Canada T2N 4Z6 E-mail: bmlashew@ucalgary.ca What is known about this topic • Collaboration between formal, paid caregivers and informal, family caregivers is central to well- supported futures for adults with pre-existing disabilities and/or mental health issues. • Families often view paid caregivers and agencies as inadequately responsive to their desire for involvement. • Paid caregivers struggle with families who are demanding and others who are uninvolved and hard to reach. What this paper adds • Relationships between families and paid supports can be complex, 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. Keywords: adult mental healthcare, collaborative practice, disabilities, family caregivers, family support, paid caregivers uneven and sometimes characterised by conflict. • Families often do not plan for age- related change and collaboration with agencies is vital to anticipating and effectively navigating next steps in care for adults with disabilities and/or mental health issues. • Agencies face many, and often competing, demands in endeavours to support families who have diverse priorities and styles of care and collaboration. Introduction Adults with pre-existing disabilities and/or mental health issues are liv- ing longer than ever before, bringing new demands for planning and pro- viding for futures that extend beyond the care capacity of their ageing parents. Effective collaboration between formal, paid caregivers and infor- mal, family caregivers is central to well-supported futures for people as they grow older with pre-existing disabilities and/or mental health issues. Much has been written about the contributions of, and demands on, these parties in their respective endeavours, and practice guidelines have been developed to promote effective collaboration between the two. Yet, both parties continue to experience frustrations and unaddressed needs in relation to their collaboration. Existing literature on obstacles to collaboration between paid and family caregivers tends to be focused on family perceptions of paid caregivers as inadequately responsive to © 2013 John Wiley & Sons Ltd 178 Health and Social Care in the Community (2014) 22(2), 178–186 doi: 10.1111/hsc.12074