The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Ruggiano, Nicole; Brown, Ellen L.; Shaw, Shanae; Geldmacher, David S.; Clarke, Peter J.; Hristidis, Vagelis; Bertram, Jessica

doi:10.1080/01634372.2018.1546786

Cited by 42 publications

(74 citation statements)

References 25 publications

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“…In light of these findings and the range of low and high technology suggestions made by FCs in our study, increased policy and production attention to technological and social solutions to the fragmentation of the support services system is imperative [69]. While our participants envisioned technology that had the potential to improve the care FCs provided by giving greater knowledge of available support services and in-the-moment tactics to manage challenging behaviors, the present state of commercial development has focused on addressing specific challenges in caregiving such as emotional support and education [40,44,45] as well as specific physical challenges (e.g. mobility aids, monitoring devices) [75,76].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Discussionmentioning

confidence: 99%

“…In another study, GPS tracking technology was shown to help people in the early stages of dementia and their FCs feel less stressed and worried [42]. As such, many policy makers and commercial developers have come to see technology as a panacea that will enhance the sustainability of FCs' caregiving [43][44][45].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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Section: Discussionmentioning

confidence: 99%

Seeking Resilience: The Care Capacity Goals of Family Carers and the Role of Technology in Achieving Them

Leslie

Gray

Eales

et al. 2019

Preprint

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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. 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.

show abstract

“…In light of these findings and the range of low and high technology suggestions made by FCs in our study, increased policy and production attention to technological and social solutions to the fragmentation of the support services system is imperative [78]. While our participants envisioned technology that had the potential to improve the care FCs provided by giving greater knowledge of available support services and in-the-moment tactics to manage challenging behaviors, the present state of commercial development has focused on addressing specific challenges in caregiving such as emotional support and education [47,49,50] as well as specific physical challenges (e.g. mobility aids, monitoring devices) [84,85].…”

Section: Discussionmentioning

confidence: 99%

“…Technology-based interventions are purported to have the potential to support FCs caring for older adults -especially those caring for persons with dementia [45][46][47]. As such, many policy makers and commercial developers have come to see technology as a cure all that will enhance FCs' resilience and so make their care efforts sustainable [48][49][50].…”

Section: Introductionmentioning

confidence: 99%

Seeking Resilience: The Care Capacity Goals of Family Carers and the Role of Technology in Achieving Them

Leslie

Gray

Eales

et al. 2019

Preprint

View full text Add to dashboard Cite

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, FCs’ resilience and the sustainability of their unpaid care work have become pressing issues. This paper explores FCs’ care-related work goals and 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 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 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.

show abstract

The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Cited by 42 publications

References 25 publications

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

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

Seeking Resilience: The Care Capacity Goals of Family Carers and the Role of Technology in Achieving Them

Seeking Resilience: The Care Capacity Goals of Family Carers and the Role of Technology in Achieving Them

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