Dealing with daily challenges in dementia (deal-id study): process evaluation of the experience sampling method intervention ‘Partner in Sight’ for spousal caregivers of people with dementia

Knippenberg, Rosalia J. M. van; Vugt, Marjolein E. de; Smeets, Claudia M. J.; Myin-Germeys, Inez; Verhey, Frans R.J.; Ponds, Rudolf

doi:10.1080/13607863.2017.1348466

Cited by 10 publications

(13 citation statements)

References 31 publications

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“…Of the 18 participants, 13 individuals experienced this as pleasant or neutral, but 4 reported this to be unpleasant. Similar side-effects of the ESM have previously been reported, and a suggestion could be to use positive formulations in the ESM questions [ 44 ]. For example, instead of asking about cognitive problems (eg, “Since the last beep, I had memory problems”), abilities could be targeted instead (eg, “I can remember well”).…”

Section: Discussionsupporting

confidence: 74%

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study

Bartels¹,

Knippenberg²,

Malinowsky³

et al. 2020

JMIR Aging

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Background Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time or contexts. Objective This study examines the feasibility and usability of applying the experience sampling method (ESM) in people with MCI to provide a detailed and dynamic picture of behavioral, emotional, and cognitive patterns in everyday life. Methods For 6 consecutive days, 21 people with MCI used an ESM app on their smartphones. At 8 semi-random timepoints per day, participants filled in momentary questionnaires on mood, activities, social context, and subjective cognitive complaints. Feasibility was determined through self-reports and observable human-technology interactions. Usability was demonstrated on an individual and group level. Results Of the 21 participants, 3 dropped out due to forgetting to carry their smartphones or forgetting the study instructions. In the remaining 18 individuals, the compliance rate was high, at 78.7%. Participants reported that momentary questions reflected their daily experiences well. Of the 18 participants, 13 (72%) experienced the increase in awareness of their own memory functions as pleasant or neutral. Conclusions Support was found for the general feasibility of smartphone-based experience sampling in people with MCI. However, many older adults with MCI are currently not in possession of smartphones, and study adherence seems challenging for a minority of individuals. Momentary data can increase the insights into daily patterns and may guide the person-tailored development of self-management strategies in clinical settings.

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Section: Discussionsupporting

confidence: 74%

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study

Bartels¹,

Knippenberg²,

Malinowsky³

et al. 2020

JMIR Aging

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“…These findings indicate suboptimal implementation of the advice of movement disorder experts communicated in a letter, as typically done in standard outpatient settings, and that other medical consultation models may be more appropriate for this population. This is in line with previous studies, with more elaborate interventions, that reported low adherence in interventions aiming at improving quality of disease management in elderly populations [47][48][49][50][51]. Perhaps the most important result of this trial is that we identified several barriers for the implementation of the advice.…”

Section: Discussionsupporting

confidence: 89%

Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial

Hommel¹,

Meinders²,

Weerkamp

et al. 2020

JPD

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Background Treatment of patients with late-stage parkinsonism is often sub-optimal. Objective To test the effectiveness of recommendations by a movement disorder specialist with expertise in late-stage parkinsonism. Methods Ninety-one patients with late-stage parkinsonism considered undertreated were included in a pragmatic multi-center randomizedcontrolled trial with six-month follow-up. The intervention group received a letter with treatment recommendations to their primary clinician based on an extensive clinical assessment. Controls received care as usual. The primary outcome was the Unified Parkinson Disease Rating Scale (UPDRS) part-II-Activities of Daily Living. Other outcomes were quality-of-life (PDQ-8), mental health (UPDRS-I), motor function (UPDRS-III), treatment complications (UPDRS-IV), cognition (Mini-mental-state-examination), non-motor symptoms (Non-Motor-Symptoms-scale), health status (EQ-5D-5L) and levodopa-equivalent-daily-dose (LEDD). We also assessed adherence to specialist recommendations. In addition to intention-to-treat analyses, a per-protocol analysis was conducted only including those in whom recommendations were at least partially followed. Results Sample size calculation required 288 patients, but only 91 patients could be included. Treating physicians followed recommendations at least partially in 37 (64%) patients. The intention-to-treat analysis showed no difference in primary outcome (between-group difference =-1.2, p = 0.45), but there was greater improvement for PDQ-8 in the intervention group (between-group difference =-3.7, p=0.02). The per-protocol analysis confirmed these findings, and also showed less deterioration in UPDRS-part I, greater improvement on UPDRS-total score and greater increase in LEDD in the intervention group. Conclusions There was no improvement on the UPDRS-ADL part in this study, which was limited by underrecruitment and limited implementation of recommendations, but there was a positive change in quality of life. These findings suggest that therapeutic gains may be reached even in this vulnerable group of patients with late-stage parkinsonism, but also emphasize the need for better strategies to implement specialist recommendations to further improve outcomes.

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“…The process evaluation in intersec-CM is focusing on the intervention itself. Based on further process evaluation designs [10][11][12][13][14][15][16], we defined dimensions and research questions focusing on relevant key actors of the ICM in routine care.…”

Section: Methodsmentioning

confidence: 99%

“…The deal-id study investigated how feedback for caregivers/relatives of persons with dementia elicits positive emotions. The corresponding process evaluation analysed sampling quality (recruitment and randomisation, reach) and intervention quality (relevance and feasibility, adherence to protocol) [ 13 ]. A process evaluation for dementia care mapping in Germany used adherence, dosage, participant responsiveness and quality of delivery as evaluation criteria [ 14 ].…”

Section: Introductionmentioning

confidence: 99%

Intersectoral care management for older people with cognitive impairment during and after hospital stays [intersec-CM]: study protocol for a process evaluation within a randomised controlled trial

Dehl

Sauerbrey

Dreier-Wolfgramm

et al. 2021

Trials

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Background In the healthcare system in Germany, different institutions and actors play specific roles in the discharge and transition of patients from hospitals into primary care (Sachverständigenrat zur Begutachtung der Entwicklung im Gesundheitswesen, Wettbewerb an der Schnittstelle zwischen ambulanter und stationärer Gesundheitsversorgung, 2012). However, there are shortcomings in these intersectoral transitions. Especially in older people with cognitive impairment (PCI), discharge management often lacks coordination and cooperation between healthcare providers. This frequently results in higher rates of unscheduled readmission. The project intersec-CM is a randomised controlled trial (RCT) that aims to explore up to what extent an intersectoral care management (ICM) can improve this transition. This ICM is delivered by nurses with special training in care management. The objective of this paper is to describe a mixed-methods process evaluation of the intersectoral care management intervention and the factors that facilitate and inhibit its implementation. Methods Different study designs for process evaluations from previous literature were collected and analysed according to the dimension implementation fidelity, satisfaction with the intervention, feasible transfer into routine care, optimum point of time, frequency and execution of the intervention, and context factors. Results The actor-network theory was chosen as the theoretic framework for the process evaluation. Based on this theory, a mixed-methods design was developed to combine and integrate qualitative and quantitative evaluation methods. The qualitative part includes semi-structured interviews using topic guides (phase 1) and later in-depth interviews with narrative portions (phase 3), which will be analysed by using the qualitative content analysis according to Kuckartz. The quantitative survey (phase 2) is conducted with standardised questionnaires. Discussion Challenges in data collection include the development of interview guidelines, which require different terminologies depending on every specific actor targeted in the intervention. Conducting the interviews, there is a risk of misunderstanding the older PCI by the interviewer and vice versa. However, the combination of qualitative and quantitative approaches as different techniques of process evaluation may help to capture, integrate and analyse data on different dimensions of the intervention. Conclusions The results of our process evaluation may serve as an implementation guideline for intersectoral care management in the German healthcare system. Furthermore, the approach to evaluate the process of a complex intervention in health care for older PCI may serve as a stimulus to broaden the evidence base also of other complex intervention studies to improve health care for this vulnerable group. The study was ethically approved by the Ethics Committee of the Ernst-Moritz-Arndt University of Greifswald. The study has been registered at the U.S. National Library of Medicine. Trial registration ClinicalTrials.gov NCT03359408. Registered on 2 December 2017. The approximate date when recruitment to the process evaluation of the study will be completed is 31 May 2021.

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Dealing with daily challenges in dementia (deal-id study): process evaluation of the experience sampling method intervention ‘Partner in Sight’ for spousal caregivers of people with dementia

Cited by 10 publications

References 31 publications

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study

Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial

Intersectoral care management for older people with cognitive impairment during and after hospital stays [intersec-CM]: study protocol for a process evaluation within a randomised controlled trial

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