Involuntary care – capturing the experience of people with dementia in nursing homes. A concept mapping study

Boer, M.E. de; Depla, Marja; Frederiks, B.J.M.; Negenman, Annemarieke A.; Habraken, Jolanda M.; Zee, Carlijn H. van Randeraad-van der; Embregts, P.J.C.M.; Hertogh, Cees M.P.M.

doi:10.1080/13607863.2018.1428934

Cited by 12 publications

(20 citation statements)

References 30 publications

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“…Concept mapping is a mixed methods approach that involves a structured process to integrate qualitative and quantitative data. Although historically used for program planning and evaluation [ 31 ], concept mapping has also been used for a wide range of studies, including measurement development [ 32 - 35 ], public health priority setting and program development [ 36 , 37 ], examining patient experience for quality improvement projects [ 38 - 40 ], understanding caregiver perspectives around care issues [ 41 ], and developing evidence-based public health care practices [ 42 ]. Concept mapping permits a diverse participant group of any size, in a wide range of settings, identifies participants’ perspectives, and visually represents their viewpoints about a focused topic on a map [ 43 - 45 ].…”

Section: Methodsmentioning

confidence: 99%

Care Staff Perspectives on Using Mobile Technology to Support Communication in Long-Term Care: Mixed Methods Study

Wilson

Small

2020

JMIR Nursing

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Background Long-term care (LTC) homes provide 24-hour care for people living with complex care needs. LTC staff assist older adults living with chronic conditions such as Alzheimer disease, related dementias, and stroke, which can cause communication disorders. In addition to the complex cognitive challenges that can impact communication, further difficulties can arise from cultural-language differences between care staff and residents. Breakdowns in caregiver-resident communication can negatively impact the delivery of person-centered care. Recent advances in mobile technology, specifically mobile devices (tablets and smartphones) and their software apps, offer innovative solutions for supporting everyday communication between care staff and residents. To date, little is known about the care staff’s perspectives on the different ways that mobile technology could be used to support communication with residents. Objective This study aims to identify care staff’s perspectives on the different ways of using devices and apps to support everyday communication with adults living in LTC homes and the priority care areas for using mobile technology to support communication with residents. Methods This descriptive study employed concept mapping methods to explore care staff’s perspectives about ways of using mobile technology with residents and to identify the usefulness, practicality, and probable uses of mobile technology to support communication in priority care areas. Concept mapping is an integrated mixed methods approach (qualitative and quantitative) that uses a structured process to identify priority areas for planning and evaluation. In total, 13 care staff from a single LTC home participated in this study. Concept mapping includes 2 main data collection phases: (1) statement generations through brainstorming and (2) statement structuring through sorting and rating. Brainstorming took place in person in a group session, whereas sorting and rating occurred individually after the brainstorming session. Concept mapping data were analyzed using multidimensional scaling and cluster analysis to generate numerous interpretable data maps and displays. Results Participants generated 67 unique statements during the brainstorming session. Following the sorting and rating of the statements, a concept map analysis was performed. In total, 5 clusters were identified: (1) connect, (2) care management, (3) facilitate, (4) caregiving, and (5) overcoming barriers. Although all 5 clusters were rated as useful, with a mean score of 4.1 to 4.5 (Likert: 1-5), the care staff rated cluster 2 (care management) as highest on usefulness, practicality, and probable use of mobile technology to support communication in LTC. Conclusions This study provided insight into the viewpoints of care staff regarding the different ways mobile technology could be used to support caregiver-resident communication in LTC. Our findings suggest that care management, facilitating communication, and overcoming barriers are 3 priority target areas for implementing mobile health interventions to promote person-centered care and resident-centered care.

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Section: Methodsmentioning

confidence: 99%

Care Staff Perspectives on Using Mobile Technology to Support Communication in Long-Term Care: Mixed Methods Study

Wilson

Small

2020

JMIR Nursing

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“…This was done in this study by obtaining double consent, which means gathering the proxy consent of the legal representative, as well as assent from the person with dementia, every time he or she participated in an exercise session. In contrast, involuntary treatments among people with dementia, such as physical restraints, psychotropic medication, or nonconsensual care, are parts of lived experience in people with dementia (de Boer et al, 2019;Moermans et al, 2018). Consequently, showcasing the voluntariness of an exercise program and promoting a feeling of autonomy within each training session by, for example, creating opportunities to codesign the exercises, can be new strategies to increase adherence in people with dementia.…”

Section: Feasibilitymentioning

confidence: 99%

Feasibility and Effectiveness of a Biography-Based Physical Activity Intervention in Institutionalized People With Dementia: Quantitative and Qualitative Results From a Randomized Controlled Trial

Gebhard¹,

Mess²

2022

Journal of Aging and Physical Activity

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The objective of this multicenter randomized controlled trial was to evaluate the feasibility and effectiveness of a physical activity intervention for institutionalized people with dementia, individualized by capacity and biography. The intervention group (n = 34; age: mean = 86.09 years; 79.40% female; mean Mini-Mental State Examination value = 18.59) participated in a multicomponent training program, which included daily activities, dancing, gardening, and sports/games, twice weekly for 3 months. The control group (n = 29; age: mean = 86.34 years; 75.90% female; mean Mini-Mental State Examination value = 19.90) received standard care. Feasibility was evaluated by means of focus groups and feedback questionnaires. Functional performance (Short Physical Performance Battery and Timed Up and Go Test), activities of daily living, and gait were outcomes for effectiveness. A high adherence rate (80.46%) and uniformly positive feedback indicate that the piloted training program is feasible. The results show preliminary effectiveness on functional performance (Short Physical Performance Battery mean t0 = 3.15; mean t1 = 4.50; p = .006) and gait (e.g., velocity mean t0 = 46.97; mean t1 = 58.04; p = .007).

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“…This makes residents particularly vulnerable with regard to demonstrating their consent or dissent with respect to actions concerning their freedom, which can subsequently lead to dilemma's among nursing staff on how to provide good care, foster their residents’ safety, and respect their autonomy at the same time (Gastmans & Milisen, 2006; McBrien, 2007). For instance, a recent study in nursing homes shows that people with severe dementia may express their resistance toward involuntary care more often through subtle behavior next to obvious expressions of resistance (de Boer et al, 2018), which underscores the importance of alertness for responses that indicate resistance when using restrictive measures.…”

Section: Introductionmentioning

confidence: 99%

Exploring restrictive measures using action research: A participative observational study by nursing staff in nursing homes

Bekkema¹,

Niemeijer

Frederiks

et al. 2021

Journal of Advanced Nursing

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Aim In nursing homes, nursing staff have a key role in the use of restrictive measures. However, their active role in reducing restrictive measures has so far been limited. The aim of this study is to explore how and when the application of restrictive measures in nursing homes occurs including underlying factors, together with nursing staff. Design Participatory action research was chosen for a bottom‐up understanding of the use of restrictive measures. Method Two Dutch nursing homes participated in 2016/2017 with 18 nursing staff members in the action research team. Nursing staff carried out 33 observations followed by a reflective interview. Results Nursing staff observed a wide range of restrictions, including restrictions in freedom of choice, not being able to go outside, not being in charge of medication, and a directive/unresponsive care attitude. Factors influencing restrictions included habits and institutionalization, cognitive ability of the resident, availability of personnel, and responsibility for safety. A responsive care attitude and raising awareness were seen as good practices to enhance freedom. Conclusions By taking a distant view on their work, nursing staff discovered a broad range of restrictions, including ‘less obvious’ restrictions. Active forms of learning may position nursing staff to discuss and reduce restrictive measures. Impact What problem did the study address?: Restrictive measures are still common in nursing homes. Despite their key role in using restrictive measures, nursing staff's active role in research has been limited. What were the main findings?: By participating as researchers, nursing staff gained a broader perspective on restrictive measures. Many ‘less obvious’ restrictions were related to routines and institutionalization and were considered as eye opening by nursing staff. Where and on whom will the research have impact?: Active forms of learning such as observing and reflecting has the potential to position nursing staff as ‘agents of change’.

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Involuntary care – capturing the experience of people with dementia in nursing homes. A concept mapping study

Cited by 12 publications

References 30 publications

Care Staff Perspectives on Using Mobile Technology to Support Communication in Long-Term Care: Mixed Methods Study

Care Staff Perspectives on Using Mobile Technology to Support Communication in Long-Term Care: Mixed Methods Study

Feasibility and Effectiveness of a Biography-Based Physical Activity Intervention in Institutionalized People With Dementia: Quantitative and Qualitative Results From a Randomized Controlled Trial

Exploring restrictive measures using action research: A participative observational study by nursing staff in nursing homes

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