Good and Bad Days

Pihet, Sandrine; Passini, Christina Moses; Eicher, Manuela

doi:10.1097/nnr.0000000000000243

Cited by 14 publications

(10 citation statements)

References 33 publications

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“…Recently, a study [ 10 ] used EMA to identify major areas of concern for caregivers of persons with Alzheimer disease; the study’s overall goal was to provide support and information for caregivers in their home. Another study used experience sampling methodology to examine the day-to-day effects of caregiving on dementia caregivers which could be used to tailor interventions to their individual needs [ 11 ]; however, there has been a paucity of research to date examining the use of EMA to sample data from both persons with dementia and their caregivers.…”

Section: Introductionmentioning

confidence: 99%

Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study

Potts¹,

Bond²,

Ryan³

et al. 2020

JMIR Mhealth Uhealth

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Background User-interaction event logs provide rich and large data sets that can provide valuable insights into how people engage with technology. Approaches such as ecological momentary assessment (EMA) can be used to gather accurate real-time data in an individual’s natural environment by asking questions at any given instant. Objective The purpose of this study was to evaluate user engagement and responses to EMA questions using InspireD, an app used for reminiscence by persons with dementia and their caregivers. Research findings can be used to inform EMA use within digital health interventions. Methods A feasibility trial was conducted in which participants (n=56) used the InspireD app over a 12-week period. Participants were a mean age of 73 (SD 13) and were either persons with dementia (n=28) or their caregivers (n=28). Questions, which they could either answer or choose to dismiss, were presented to participants at various instants after reminiscence with personal or generic photos, videos, and music. Presentation and dismissal rates for questions were compared by hour of the day and by trial week to investigate user engagement. Results Overall engagement was high, with 69.1% of questions answered when presented. Questions that were presented in the evening had the lowest dismissal rate; the dismissal rate for questions presented at 9 PM was significantly lower than the dismissal rate for questions presented at 11 AM (9 PM: 10%; 11 AM: 50%; χ21=21.4, P<.001). Questions asked following reminiscence with personal media, especially those asked after personal photos, were less likely to be answered compared to those asked after other media. In contrast, questions asked after the user had listened to generic media, in particular those asked after generic music, were much more likely to be answered. Conclusions The main limitation of our study was the lack of generalizability of results to a larger population given the quasi-experimental design and older demographic where half of participants were persons with dementia; however, this study shows that older people are willing to participate and engage in EMA. Based on this study, we propose a series of recommendations for app design to increase user engagement with EMA. These include presenting questions no more than once per day, after 8 PM in the evening, and only if the user is not trying to complete a task within the app.

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Section: Introductionmentioning

confidence: 99%

Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study

Potts¹,

Bond²,

Ryan³

et al. 2020

JMIR Mhealth Uhealth

View full text Add to dashboard Cite

show abstract

“…Carers' experiences of positive (e.g., satisfaction, fulfillment, purpose, and carer-recipient cohesiveness) or negative (strain, depression, and anxiety) caregiving outcomes can change over time (Silverberg-Koerner and Baete-Kenyon, 2007). Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability of potential predictive factors themselves is understudied (e.g., Pihet et al, 2017;Van Knippenberg et al, 2017;van Knippenberg et al, 2018). The negative consequences of caregiving have been found to have a detrimental impact on carers' psychological and physical well-being (Parveen et al, 2011;Williams et al, 2014;Angelo and Egan, 2015;Faucher and Garner, 2015;Liu et al, 2019) and can continue even after the role has been relinquished (Seddon et al, 2002;Boerner et al, 2004).…”

Section: Introductionmentioning

confidence: 99%

Gaining Longitudinal Accounts of Carers' Experiences Using IPA and Photograph Elicitation

Morrison

Williams

2020

Front. Psychol.

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Fluctuations in positive and negative caregiving experiences remain only partially explained as the significant variability over time of potential predictive factors themselves is understudied. The current study aims to gain considerable insight into caregiving experiences and perceptions over time by using photovoice methodology to support semi-structured interviews. A case study, longitudinal design is taken with three female caregivers who provide detailed insight into their caregivers' experiences over a 12 month period. The interview transcripts were analyzed using IPA- Interpretative Phenomenological Analysis. This innovative combination of methods resulted in the emergence of three related themes which included consuming the role, feeling consumed by the role, and letting go of the role. The idiographic approach taken allowed both within case differences to be examined over time, and also between carer differences to be highlighted. Implications of illness type and its characteristics, and of attachment and relationship quality with the care recipient were seen in terms of how and when the caregivers moved between the themes identified. The use of others' support or respite care is examined vis-a vis caregiver's own beliefs, emotions, relationship attachment and motivations to care. Caregivers self-efficacy beliefs also shifted over time and were influential in caregiver experience as the care recipient condition or needs changed. No previous studies have found that negative caregiving consequences are, in part, under volitional control and yet our data on the underlying reasons for consuming caregiving or allowing themselves to consume, would suggest this may in part be true. This is important because it suggests that interventions to support caregivers should address relational and motivational factors more fully.

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“…The end‐user meetings in our study showed that informal caregiver wellbeing fluctuates and can even differ per day which was found before in the context of dementia 15 . Therefore, our study focused on continuous monitoring of the wellbeing of informal caregivers in order to facilitate timely, tailored interventions.…”

Section: Discussionmentioning

confidence: 60%

Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing

Oostra

Vos²,

Rikkert

et al. 2023

Int J Geriat Psychiatry

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Objectives Informal caregiving is becoming increasingly important in dementia care, but causes a considerable burden on caregivers which impacts their wellbeing. We aimed to develop and pilot test a digital monitoring tool (REsilience Monitor for INformal caregivers in Dementia [REMIND]) for wellbeing and resilience of informal caregivers to provide timely support and thereby prevent their overburden and eventually crises admissions of persons with dementia. Methods A human‐centered design method based on co‐creation with informal caregivers and professionals was used to design REMIND. During co‐creation meetings and in‐between sprint sessions, a point of focus was formulated, and a prototype was created. Case manager‐caregiver duos pilot‐tested REMIND for 3 months. Semi‐structured interviews were conducted to determine usability and acceptability. Thematic analysis was applied to the transcripts. Results Informal caregivers and professionals with varying backgrounds participated in three co‐creation meetings. Defined point of focus was to develop a tool that is able to provide insight into the experienced burden of informal caregivers. The REMIND prototype consisted of weekly questions about wellbeing and resilience for informal caregivers and a dashboard with answers for case managers. Eight case managers and 13 informal caregivers considered REMIND easy‐to‐use. Informal caregivers mentioned that REMIND stimulated self‐reflection. Case managers appreciated the tool's ability to gain insight in the actual wellbeing of informal caregivers. Conclusions The REMIND tool developed in co‐creation with end‐users potentially increases insight in actual wellbeing of informal caregivers for both caregivers and case managers. A long‐term (controlled) follow‐up study is needed to evaluate REMIND's impact on caregiver burden and crisis admissions.

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Good and Bad Days

Cited by 14 publications

References 33 publications

Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study

Ecological Momentary Assessment Within a Digital Health Intervention for Reminiscence in Persons With Dementia and Caregivers: User Engagement Study

Gaining Longitudinal Accounts of Carers' Experiences Using IPA and Photograph Elicitation

Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing

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