What is 'care quality' and can it be improved by information and communication technology? A typology of family caregivers' perspectives.

INTRODUCTION: With governments worldwide reducing their involvement in the provision of institutional long-term elder care, community-based family caregivers (FCs) have become a key element in policies aimed at improving the quality of healthcare systems and maintaining their financial sustainability. This paper uses data from focus groups with FCs providing care to older adults to describe their approaches to and priorities for achieving care quality and sustainability as they work with formal health and social care systems. It describes FCs' views on information and communications technology (ICT) as potential supports for achieving these care quality and sustainability goals. METHODS: We held 10 focus groups from May 2017 to August 2018 and recruited 25 FCs through a mix of convenience and snowball sampling strategies. We employed an inductive approach and used qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. RESULTS: Quality of care - as delivered by both FCs themselves, and formal health and social care systems - was a major preoccupation for our participants. They saw communications quality as a key aspect of the broader concept of care quality. Our data analysis produced a typology of communications quality from the FC perspective. Analysis of our data also revealed ICT development opportunities and available products in key areas. CONCLUSIONS: Our findings suggest that the formal care system providers could be more caregiver-oriented in their communications by engaging FCs in the decision-making process and allowing them to express their own concerns and goals. The implication of our findings for those seeking to develop policies and ICT products in support of FCs is that these should focus on human relationships and seek to expand facilitative communications.

The care capacity goals of family carers and the role of technology in achieving them.

BACKGROUND: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. METHODS: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. RESULTS: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. CONCLUSIONS: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers.

An implementation history of primary health care transformation: Alberta's primary care networks and the people, time and culture of change.

BACKGROUND: Primary care, and its transformation into Primary Health Care (PHC), has become an area of intense policy interest around the world. As part of this trend Alberta, Canada, has implemented Primary Care Networks (PCNs). These are decentralized organizations, mandated with supporting the delivery of PHC, funded through capitation, and operating as partnerships between the province's healthcare administration system and family physicians. This paper provides an implementation history of the PCNs, giving a detailed account of how people, time, and culture have interacted to implement bottom up, incremental change in a predominantly Fee-For-Service (FFS) environment. METHODS: Our implementation history is built out of an analysis of policy documents and qualitative interviews. We conducted an interpretive analysis of relevant policy documents (n = 20) published since the first PCN was established. We then grounded 12 semi-structured interviews in that initial policy analysis. These interviews explored 11 key stakeholders' perceptions of PHC transformation in Alberta generally, and the formation and evolution of the PCNs specifically. The data from the policy review and the interviews were coded inductively, with participants checking our emerging analyses. RESULTS: Over time, the PCNs have shifted from an initial Frontier Era that emphasized local solutions to local problems and featured few rules, to a present Era of Accountability that features central demands for standardized measures, governance, and co-planning with other elements of the health system. Across both eras, the PCNs have been first and foremost instruments and supporters of family physician authority and autonomy. A core group of people emerged to create the PCNs and, over time, to develop a long-term Quality Improvement (QI) vision and governance plan for them as organizations. The continuing willingness of both these groups to work at understanding and aligning one another's cultures to achieve the transformation towards PHC has been central to the PCNs' survival and success. CONCLUSIONS: Generalizable lessons from the implementation history of this emerging policy experiment include: The need for flexibility within a broad commitment to improving quality. The importance of time for individuals and organizations to learn about: quality improvement; one another's cultures; and how best to support the transformation of a system while delivering care locally.