Getting what they need when they need it

Werner, Nicole E.; Stanislawski, Barbara; Marx, Katherine; Watkins, Daphne C.; Kobayashi, Marissa A; Kales, Helen C.; Gitlin, Laura N.

doi:10.4338/aci-2016-07-ra-0122

Cited by 52 publications

(29 citation statements)

References 33 publications

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“…The content delivered via ICT solutions is often static and not specific to caregiving needs [ 34 , 41 ]. The literature reported that the experience of seeking information about caregiving situations using ICT solutions appeared to be a chaotic and confusing process, as informal caregivers need to access multiple information routes to get the information they need [ 34 , 37 , 38 , 55 ]. In many studies, informal caregivers reported difficulties in finding specific and up-to-date information related to their caregiving situation which adapts to changing needs over time [ 41 , 48 , 55 ].…”

Section: Resultsmentioning

confidence: 99%

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Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

Hassan¹

2020

JMIR Aging

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Background Information and communication technology (ICT)–based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions. Objective The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges. Methods A scoping review methodology was used following the Arksey and O’Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions. Results The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers. Conclusions Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders—including policy makers, health care professionals, informal caregivers, and care recipients—about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.

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Section: Resultsmentioning

confidence: 99%

“…Some informal caregivers don’t feel confident about the information provided via ICT solutions [ 41 , 55 ]. Informal caregivers reported their concerns about the quality of the content presented via ICT solution [ 33 , 34 , 51 ].…”

Section: Resultsmentioning

confidence: 99%

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

Hassan¹

2020

JMIR Aging

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“…The results of this search strategy show that only two of the included 46 references were implementation studies ( Boots et al, 2017 ; Griffiths et al, 2016 ) The results of this search strategy show that only one of the included 46 references used the term ‘implementation’ in the title ( Griffiths et al, 2016 ) and one study used the term ‘process evaluation’ in the title ( Boots et al, 2017 ). Four more studies were designed as retrospective evaluations of barriers and facilitators to the development and implementation of eHealth interventions for caregivers of people with dementia ( Chiu and Eysenbach, 2011 ; Davis et al, 2014 ; Malak et al, 2016 ; Werner et al, 2017 ). The included papers could be classified by type of study as RCTs (n = 16), pre-test and post-test mixed methods studies (n = 15), qualitative analyses of interviews and other text-based sources (n = 14), and quantitative studies, like questionnaires (n = 2).…”

Section: Resultsmentioning

confidence: 99%

“… Theme 1: Determinants associated with the eHealth application Theme 2: Determinants associated with the informal caregiver Categories and Subcategories References Categories and subcategories References User-friendliness ( Boots et al, 2017 ; Boyd et al, 2014 ; Chiu, 2010 ; Chiu et al, 2010 ; Gaugler et al, 2015 ; Gaugler et al, 2016 ; Griffiths et al, 2016 ; Hattink et al, 2016 ; Hattink et al, 2015 ; Kales et al, 2016 ; Marx et al, 2015 ; Núñez-Naveira et al, 2016 ; Pagán-Ortiz et al, 2014 ) Psychological factors Expectation of use ( Gaugler et al, 2016 ; Ko, 2011 ) Psychological state ( Chiu et al, 2009 ; Finkel et al, 2007 ; Griffiths et al, 2016 ; Pot et al, 2015 ) Trust ( Werner et al, 2017 ) Autonomy ( Andersson et al, 2016 ) Motivation ( Gaugler et al, 2016 ; Hattink et al, 2016 ; Schaller et al, 2016 ) Confidence ( Andersson et al, 2016 ) Development Process ( Fowler et al, 2014 ; Ko, 2011 ; Schaller et al, 2016 ; van der Roest et al, 2010 ) Frustration ( Fowler et al, 2014 ; Griffiths et al, 2...…”

Section: Resultsmentioning

confidence: 99%

A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Christie

Bartels

Boots

et al. 2018

Internet Interventions

122

116

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ObjectivesThe objectives were to (1) systematically review the literature on the implementation of eHealth interventions for informal caregivers of people with dementia, and (2) identify determinants of successful implementation.MethodsOnline databases were searched for articles about eHealth interventions for informal caregivers of people with dementia, providing information on their implementation. Articles were independently screened and inductively analyzed using qualitative analysis. The analysis was mapped onto the Consolidated Framework for Implementation Research (CFIR; Damschroder et al., 2009).Findings46 articles containing 204 statements on implementation were included. The statements on implementation were grouped into four categories: Determinants associated with the eHealth application, informal caregiver, implementing organization, or wider context. Mapping of the determinants on the CFIR revealed that studies have focused mostly on characteristics of the intervention and informal caregiver. Limited attention has been paid to organizational determinants and the wider context.ConclusionsDespite prolific effectiveness and efficacy research on eHealth interventions for caregivers of people with dementia, there is a critical dearth of implementation research. Furthermore, there is a mismatch between eHealth intervention research and implementation frameworks, especially concerning organizational factors and wider context. This review underscores the importance of future implementation research in bridging the gap between research and practice.

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“…This also runs the risk of misinformation when caregivers take medical advice from community members rather than trained medical professionals. Generally, family caregivers in low-income countries confront barriers in obtaining needed information about behavioral symptom management including but not limited to timely access to information, access to information that is tailored or specific to caregiver's needs and contexts and usable information that directly informs on how caregivers' manage behaviors (43).…”

Section: Tablementioning

confidence: 99%

Psychosocial supports utilized by caregivers of patients with dementia in South western Uganda: A qualitative investigation

Abaasa

Obua

Wakida

et al. 2019

Preprint

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Background Patients with dementia experience problems ranging from mild to severe impairments in daily life activities. In Uganda, like in most other low and middle-income countries, families are a cornerstone in providing care to patients with dementia. Serving as a caregiver for a person with Alzheimer’s disease is a physically, emotionally and financially demanding role, that is associated with increased stress, depression, fatigue, and financial strain. These have often resulted in elder abuse or neglect of the patients. Currently, data on psychosocial supports available to caregivers of patients with dementia in Uganda is not available.Methods We conducted a qualitative assessment of the psychosocial supports available to caregivers of patients with Alzheimer’s disease and related dementias in southwestern Uganda, including the content of the formal and informal support interventions and by whom they are delivered.Results Medical practitioners provide educational support on the diagnosis and prognosis of dementia, but may not provide emotional support in the form of counseling to caregivers of patients with dementia. Caregivers in Southwestern Uganda, receive unstructured emotional and instrumental support from sources outside of the medical system such as family and community, which leave the Caregivers in confusion.Conclusions The medical care system offers some information about the clinical presentation of Alzheimer’s disease but little or no psychosocial support to the Caregivers of patients with the disease. This has implications for how families and Caregivers cope with the day-to-day care of patients with Alzheimer’s disease in Uganda and calls for institutionalization of structured psychosocial support for Caregivers to improve the care given to Alzheimer’s patients.

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Getting what they need when they need it

Abstract: The sociotechnical system framework is a useful approach for identifying information needs of family caregivers to inform design of web-based platforms that are user-centered.

Cited by 52 publications

References 33 publications

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

A systematic review on the implementation of eHealth interventions for informal caregivers of people with dementia

Psychosocial supports utilized by caregivers of patients with dementia in South western Uganda: A qualitative investigation

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