Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens

Ponnala, Siddarth; Block, Laura; Lingg, A. J.; Kind, Amy; Werner, Nicole E.

doi:10.1016/j.apergo.2020.103070

Cited by 26 publications

(19 citation statements)

References 28 publications

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“…However, the extent of the effectiveness of passive learning content (eg, reading an article or watching a video) provided by these apps is unknown and may be limited as opposed to engaged active learning approaches that foster information retention [ 28 - 30 ]. In addition, care partners also reported the need for training, support for coordination across the caregiving network, connection to relevant resources, and social support [ 4 , 5 , 27 , 31 - 33 ]. Some apps did attempt to address care partners’ need for social support by offering forums, chats, and community features.…”

Section: Discussionmentioning

confidence: 99%

“…Below acceptable engagement scores are concerning, as engagement issues can lead to technology abandonment, reduced acceptance, or failure to use the app to its full potential [ 49 , 50 ]. For care partners, engagement may be critical, as they often experience high levels of demands associated with their caregiver role [ 31 , 51 , 52 ]. As demonstrated in other populations with chronic health conditions [ 53 , 54 ], engagement is important to sustain care partners’ attention when their attention is drawn to the many other demands they experience daily.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation

Werner¹,

Brown²,

Loganathar³

et al. 2022

JMIR Mhealth Uhealth

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Background Over 11 million care partners in the United States who provide care to people living with Alzheimer disease and related dementias (ADRD) cite persistent and pervasive unmet needs related to their caregiving role. The proliferation of mobile apps for care partners has the potential to meet care partners’ needs, but the quality of apps is unknown. Objective This study aims to evaluate the quality of publicly available apps for care partners of people living with ADRD and identify design features of low- and high-quality apps to guide future research and user-centered app development. Methods We searched the US Apple App and Google Play stores with the criteria that included apps needed to be available in the US Google Play or Apple App stores, accessible to users out of the box, and primarily intended for use by an informal (family or friend) care partner of a person living with ADRD. We classified and tabulated app functionalities. The included apps were then evaluated using the Mobile App Rating Scale (MARS) using 23 items across 5 dimensions: engagement, functionality, aesthetics, information, and subjective quality. We computed descriptive statistics for each rating. To identify recommendations for future research and app development, we categorized rater comments on score-driving factors for each MARS rating item and what the app could have done to improve the item score. Results We evaluated 17 apps. We found that, on average, apps are of minimally acceptable quality. Functionalities supported by apps included education (12/17, 71%), interactive training (3/17, 18%), documentation (3/17, 18%), tracking symptoms (2/17, 12%), care partner community (3/17, 18%), interaction with clinical experts (1/17, 6%), care coordination (2/17, 12%), and activities for the person living with ADRD (2/17, 12%). Of the 17 apps, 8 (47%) had only 1 feature, 6 (35%) had 2 features, and 3 (18%) had 3 features. The MARS quality mean score across apps was 3.08 (SD 0.83) on the 5-point rating scale (1=inadequate to 5=excellent), with apps scoring highest on average on functionality (mean 3.37, SD 0.99) and aesthetics (mean 3.24, SD 0.92) and lowest on average on information (mean 2.95, SD 0.95) and engagement (mean 2.76, SD 0.89). The MARS subjective quality mean score across apps was 2.26 (SD 1.02). Conclusions We identified apps whose mean scores were more than 1 point below minimally acceptable quality, whereas some were more than 1 point above. Many apps had broken features and were rated as below acceptable for engagement and information. Minimally acceptable quality is likely to be insufficient to meet care partner needs. Future research should establish minimum quality standards across dimensions for care partner mobile apps. Design features of high-quality apps identified in this study can provide the foundation for benchmarking these standards.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation

Werner¹,

Brown²,

Loganathar³

et al. 2022

JMIR Mhealth Uhealth

View full text Add to dashboard Cite

show abstract

“…Furthermore, role clarification can decrease reduce informal caregivers’ burden ( Wittenberg et al, 2018 ) and role conflicts between informal caregivers and healthcare professionals ( Bowers, 1988 ). Especially, during nursing home transitions role clarification is required ( Bucknall et al, 2016 ), as informal caregivers may adopt their roles ( Graneheim et al, 2014 ) from focussing more on housekeeping ( Brodaty & Donkin, 2009 ), personal care and vigilance ( Ponnala et al, 2020 ) in HC to emphasizing attention on advocating ( Prince, Prina, & Guerchet, 2013 ), decision-making and additional monitoring in nursing homes ( Hoek et al, 2020 ). Apart from identifying and discussing the types of roles, conversing about the participation level ( Thompson, 2007 ) is also part of clarifying informal caregivers’ position within interprofessional collaboration.…”

Section: Discussionmentioning

confidence: 99%

Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers

Bolt

Janssen

2022

Dementia

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A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: ( 1) Informal caregivers’ roles in interprofessional collaboration with healthcare professionals and ( 2) Informal caregivers’ perception of interprofessional collaboration among healthcare professionals. Informal caregivers’ roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers’ collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.

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“…Future work should aim to capture a more diverse range of caregiving perspectives. Additionally, we only interviewed one caregiver from each network, so this data does not represent experiences of the whole caregiving network, which should be a next step (Ponnala et al, 2020).…”

Section: Limitations and Future Directionsmentioning

confidence: 99%

“…While MRT has many merits in conceptualizing capacity, it only focuses on an individual's cognitive resources. However, studies have shown that patient work extends beyond cognitive demands, including physical and socio-behavioral demands (Ponnala, Block, Lingg, Kind, & Werner, 2020;Valdez, Holden, Novak, & Veinot, 2014;Wisniewski et al, 2003). Therefore, it is possible that non-cognitive resources could also be employed to fulfill work demands.…”

Section: Introductionmentioning

confidence: 99%

Exploring Informal Caregiver Workload using a Macroergonomics Lens on Multiple Resources

Ponnala

Werner

2020

Proceedings of the Human Factors and Ergonomics Society Annual

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Persons with dementia (PwD) are an increasing population that are becoming more dependent on informal caregivers. Thus, caregiver workload is becoming a national concern due to the amount of patient work associated with caregiving. While we have a rudimentary understanding of caregiving work demands, caregiving capacity is an area that needs further inquiry. In this study, we apply a macroergonomic approach to identify non-cognitive resources employed by caregivers, and contingencies for caregivers’ resource usage. We conducted 30 semi-structured interviews with self-identified primary caregivers of persons with dementia. Using the patient work system model, we conducted content and thematic analyses of interview data to build a conceptual model of caregiving capacity. Our conceptual model includes 6 different resources channels that caregivers may activate. We also identified 3 contingencies of resource usage. This model can serve as a foundation for exploring distribution of caregiver workload among non- cognitive resources.

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Conceptualizing caregiving activities for persons with dementia (PwD) through a patient work lens

Cited by 26 publications

References 28 publications

Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation

Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation

Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers

Exploring Informal Caregiver Workload using a Macroergonomics Lens on Multiple Resources

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