Mobile Health Technology Is Here—But Are Hospice Informal Caregivers Receptive?

Phongtankuel, Veerawat; Shalev, Ariel; Adelman, Ronald D.; Dewald, Richard; Dignam, Ritchell; Baughn, Rosemary; Prigerson, Holly G.; Teresi, Jeanne A.; Czaja, Sara J.; Reid, M. Carrington

doi:10.1177/1049909118779018

Cited by 27 publications

(27 citation statements)

References 26 publications

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“…The use of ICT solutions raises ethical concerns as issues of privacy and autonomy, among other moral issues, can be present. Questions about how ICT solutions are dehumanizing the care process, how the privacy of informal caregivers and their care recipients is protected, or the confidentiality of the information provided are raised throughout the literature [ 29 , 32 , 34 , 35 , 39 , 41 , 46 , 53 ].…”

Section: Resultsmentioning

confidence: 99%

“…Literature shows that informal caregivers are concerned that if they have uploaded personal information this would compromise their safety and there might be the possibility of other people reading and accessing their private notes [ 27 , 52 ]. Concerns about online privacy and confidentiality are reported in many studies [ 42 , 46 , 48 , 49 , 52 , 58 ], showing that informal caregivers are often afraid that their personal data may be misused and manipulated.…”

Section: Resultsmentioning

confidence: 99%

“…ICT solutions need to focus on standard development guidelines and security authentication measures such as passwords, strong encryption mechanisms, and informative privacy policies [ 39 , 46 ]…”

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%

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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“…The mobile apps category includes eight reviewed studies with the main focus on mobile-based mental health tools-i.e., mobile apps (7,11,(22)(23)(24)(25)(26)(27). The thematic analysis of the result sections within the mobile category indicated reappearing topics-e.g., cope, stress, depression, self-regulation, behavior change, selfcontrol-that were further grouped into themes of "coping skills" and "emotional self-regulation."…”

Section: Mobile Apps Categorymentioning

confidence: 99%

Digital Mental Health Tools for Caregivers of Older Adults—A Scoping Review

Petrovic

Gaggioli

2020

Front. Public Health

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Informal caregivers have an important role in bridging the gap between the assistance care recipients need and what can be provided by the health care systems across Europe. The burden of the caregiving role places a significant threat to caregiver health, and the vast majority of caregiver's report stress and emotional strain, depression, and increased rates of chronic diseases. In line with this, strengthening the caregiver's mental health is one of the main goals for optimal caregiving. Caregivers already struggle with the demand of their role while coping with health problems, social, family, and work obligations. The solution for the caregiver's mental health needs to be accessible, low cost, and time-effective. This scoping review investigates digital mental health tools available as a mean of supporting the mental health of caregivers. Method: Databases searched include Summon search box, the Cochrane Library, and PubMed. Three groups of keywords were combined: relating to digital mental health interventions for caregivers, digital mental health interventions and stress in elderly care, and digital mental health interventions and burden in elderly care. Results: Caregivers reported that digital mental health tools have an overall positive role in their health. Coping skills, emotion regulation, skill building, and education are found to be important aspects of digital mental health tools. There was a noted lack of digital mental health apps available specifically for the caregiver of older adults. Furthermore, the digital mental health tools, divided into three categories in this review, focused either on building skills or educating caregivers and assisting with the duties rather than the mental health of the caregiver itself. As repeatedly suggested in the reviewed studies, digital mental health interventions overall contribute to reducing the caregiver burden with a limitation of addressing one aspect of caregiver needs-i.e., specific coping skills or education regarding illnesses such as Alzheimer's disease and Dementia. The lack of all-encompassing, data and theory-driven digital mental health tools for addressing and supporting the caregiver's mental health is evident.

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“…Previous work indicates that informal caregivers in palliative care settings are receptive to using mHealth. 34 This offers a rationale for better integration of family, caregivers, and social networks into mHealth program development for palliative care. Health-related mobile applications typically target one, individual user rather than a network of users to maximize benefit.…”

Section: Recommendations For Palliative Care Mhealthmentioning

confidence: 99%

“We're Taking Something So Human and Trying to Digitize”: Provider Recommendations for mHealth in Palliative Care

Portz

Ford

Bekelman

et al. 2020

Journal of Palliative Medicine

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Background: Mobile health (mHealth) is a promising tool for improving health outcomes. However, the benefits of using mHealth in palliative care are under studied. Objective: As a first step to designing meaningful palliative care-specific mobile applications, this research explored provider perspectives regarding the utility of mHealth in palliative care. Design: A qualitative phenomenological study with semistructured interviews. Setting/Subjects: Providers from multiple disciplines working in palliative care settings at an academic medical center. Results: Thematic analysis resulted in five provider recommendations regarding the utility and design of palliative care-specific mHealth, including (i) thoughtfulness to language, context, and delivery when assessing palliative care needs; (ii) include tools for prognosis and advance care planning; (iii) tailor health and qualityof-life goals; (iv) emphasize supports for family and caregivers; and (v) consider technology abilities of older adults. Conclusions: Palliative care providers are enthusiastic about the use of mHealth to improve care coordination, facilitate communication, enhance symptom monitoring, and improve patient-family support. However, providers have reservations about mobile functionality and depersonalized assessment and care. Providers stress the utility of mHealth to facilitate palliative care rather than replace important multidisciplinary services.

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Mobile Health Technology Is Here—But Are Hospice Informal Caregivers Receptive?

Cited by 27 publications

References 26 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

Digital Mental Health Tools for Caregivers of Older Adults—A Scoping Review

“We're Taking Something So Human and Trying to Digitize”: Provider Recommendations for mHealth in Palliative Care

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