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

Abstract

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.

Informal Caregivers’ Perceptions of Self-Efficacy and Subjective Well-Being When Using Telecare in the Home Environment: A Qualitative Study

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Caregivers’ failure to thrive: A case for health and continuing care systems transformation

“…Our co-creation approach was rooted in the belief that the population of interest (ie, family caregivers) are equal stakeholders and contributors throughout the research project. 21 Caregivers and organizations that represent them were involved in developing and beta-testing the survey instrument and recruiting a broad range of caregivers in Canada to complete the survey. Through this co-creation process with family caregivers, we learned that the concept of goals better represents what family caregivers seek to help them integrate their care work with other life responsibilities (such as raising children and maintaining paid employment).…”

“…20 The added time and effort required to navigate these complex systems is yet another item on many family caregivers' growing lists of roles and responsibilities. 21…”

Medicina Conductual: Avances y Perspectivas

“…En esta dimensión se destaca la importancia de poseer conocimiento, habilidades, destrezas y actitudes que definen el desempeño de los cuidadores, las cuales son efectivas para promover conductas deseables entre el cuidador, el receptor de cuidado y la familia, como la socialización, la mejora de la comunicación y la toma efectiva de decisiones. Al respecto, Leslie et al (2020) comentan que para mejorar la capacidad de cuidar será necesario identificar los conocimientos previos relacionados a la condición cambiante de las personas so-bre las que se ejerce el cuidado, un entrenamiento en la navegación y uso de los sistemas de apoyo existentes y, finalmente, ayudar a los CPI a desarrollar estrategias de afrontamiento, así como, oportunidades de tutoría y socialización con otros.…”