Katrien Ger Luijkx

Care in nursing homes is evolving from a medical to a person-centered orientation. Principles such as participation and autonomy are seen as the basis for person-centered care to live life as a resident prefers. However, often decisions are made for and about the resident by others, which might hinder autonomy. How can a more person-centered way of caring be achieved at the level of the unit with a focus on autonomy and participation? Participative action research (PAR) has promising elements to bring about a change. The aim of this study is to enhance autonomy in day to day practice, with a PAR approach. This led to the following research question: what processes between residents and staff in the participative action research enabled the enhancing of autonomy on the unit level? An action group consisting of residents and staff in one unit of a nursing home identified, undertook, and evaluated actions to enhance residents’ autonomy. The generated data were analyzed with the critical creative hermeneutic analysis. In total, eight themes to describe the process were found. Although there was no evidence that the actions undertaken during the PAR directly led to enhanced autonomy, the learning process and the collaboration of residents and staff is promising. It is recommended to include residents and staff as partners in actions to enhance autonomy in the nursing home. The PAR process worked well for this objective. However, participants’ physical conditions should be considered when choosing working methods. Creative work forms are not always appropriate for the population targeted.

Background: A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers. Objective: To bridge the gap between the evidence base and which community engagement (CE) approaches have actually been applied in practice over time, this study aims to investigate how CE approaches have changed over the past 4 years in 6 different regions in the Netherlands and citizens’ and professionals’ experiences underlying these changes. Methods: For the last stage of a multiple case study following the development of CE approaches in 6 different regions in the Netherlands, a realist qualitative case study was conducted. To investigate how CE approaches had changed over the past 4 years, data from the entire 4 years of the study were used, including documents, interview transcripts, and observations. To examine citizens’ and professionals’ experiences underlying these changes, new interviews were conducted. The latest interview results were discussed with a panel to ensure the results had face validity. Results: The regions had implemented different types of CE approaches over the past 4 years and were adapting these approaches over time. Many of the (remaining) approaches may be operating on a smaller scale. The study identified the following overarching themes along which CE had been adapted: fewer region-wide approaches and more community-focused approaches, more focus on building relationships with (already engaged) citizens and community-led initiatives, and more focus on practical and tangible health promotion and social cohesion activities and less focus on complex “abstract” programs. The study identified a further 4 overarching themes highlighting citizens’ and professionals’ experiences underlying these changes in the CE approaches: a lack of engagement environment, need for facilitative leadership from organizations, need for a clear and shared vision underscoring the importance of CE, and misalignment between citizens’ and professionals’ perspectives and motivations for CE. All participants had experienced the engagement environment as insufficient. To support CE, professionals experienced the need to develop and receive more facilitative leadership and to develop approaches better equipped to involve citizens in the decision-making process. Citizens experienced the need to better align citizens’ and professionals’ motivations and aims for CE approaches and to receive longer-term financial support for their community-led initiatives. Conclusions: This study suggests that CE has not yet been embedded within organizational cultures. This has arguably meant that the (remaining) CE approaches are operating on a smaller scale. To enable the further development of CE approaches, an investment in the engagement environment and a shared vision is required. Only then could CE within the regions move beyond the more seemingly smaller-scale CE approaches.

BACKGROUND A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers. OBJECTIVE To bridge the gap between the evidence base and which community engagement (CE) approaches have actually been applied in practice over time, this study aims to investigate how CE approaches have changed over the past 4 years in 6 different regions in the Netherlands and citizens’ and professionals’ experiences underlying these changes. METHODS For the last stage of a multiple case study following the development of CE approaches in 6 different regions in the Netherlands, a realist qualitative case study was conducted. To investigate how CE approaches had changed over the past 4 years, data from the entire 4 years of the study were used, including documents, interview transcripts, and observations. To examine citizens’ and professionals’ experiences underlying these changes, new interviews were conducted. The latest interview results were discussed with a panel to ensure the results had face validity. RESULTS The regions had implemented different types of CE approaches over the past 4 years and were adapting these approaches over time. Many of the (remaining) approaches may be operating on a smaller scale. The study identified the following overarching themes along which CE had been adapted: fewer region-wide approaches and more community-focused approaches, more focus on building relationships with (already engaged) citizens and community-led initiatives, and more focus on practical and tangible health promotion and social cohesion activities and less focus on complex “abstract” programs. The study identified a further 4 overarching themes highlighting citizens’ and professionals’ experiences underlying these changes in the CE approaches: a lack of engagement environment, need for facilitative leadership from organizations, need for a clear and shared vision underscoring the importance of CE, and misalignment between citizens’ and professionals’ perspectives and motivations for CE. All participants had experienced the engagement environment as insufficient. To support CE, professionals experienced the need to develop and receive more facilitative leadership and to develop approaches better equipped to involve citizens in the decision-making process. Citizens experienced the need to better align citizens’ and professionals’ motivations and aims for CE approaches and to receive longer-term financial support for their community-led initiatives. CONCLUSIONS This study suggests that CE has not yet been embedded within organizational cultures. This has arguably meant that the (remaining) CE approaches are operating on a smaller scale. To enable the further development of CE approaches, an investment in the engagement environment and a shared vision is required. Only then could CE within the regions move beyond the more seemingly smaller-scale CE approaches.

Spousal loss due to nursing home admission or death is challenging for the well-being of the remaining partner and for aging in place. We explored: “How does social network change due to spousal loss impact older adults who are aging in place?.” In-depth interviews were held with six older women who were aging in place and who lost their spouses in the past two years. Narrative analysis was conducted. Results indicate that the impact varies in three dimensions and that variations within dimensions follow three themes. The results emphasize the complexity of impact and the urgent need for a person-centred approach toward older adults after spousal loss.

During the COVID-19 outbreak in March 2020, restrictive measures (e.g., prohibiting physical visits and group activities) were introduced in nursing homes to protect older residents. Although the importance of social contacts and social activities to fulfill social needs and avoid loneliness is known, these were challenged during the pandemic. This qualitative study specifically focused on how residents, close relatives, and volunteers in nursing homes experienced the restrictive measures in retrospect and gained insights into the impact of the restrictive measures on social needs and loneliness, and the lessons that could be learned. Thirty semi-structured, face-to-face interviews with residents and close relatives, and one online focus group with ten volunteers, were conducted. Recruitment took place at psychogeriatric and somatic units in the Northern, Eastern and Southern regions of the Netherlands and Flanders, Belgium. The interviews and focus group were transcribed verbatim, and an open, inductive approach was used for analysis. Alternative ways of social contact could not fully compensate for physical visits. Generally, participants reported that it was a difficult time, indicated by feelings of loneliness, fear, sadness, and powerlessness. A great diversity in loneliness was reported. The most important reasons for feeling lonely were missing close social contacts and social activities. The diversity in the impact of restrictive measures depended on, e.g., social needs, coping strategies, and character. Restrictive COVID-19 measures in nursing homes resulted in negative emotions and unmet social needs of residents, close relatives, and volunteers. During future outbreaks of the COVID-19 virus or another virus or bacterium, for which restrictive measures may be needed, nursing homes should actively involve residents, close relatives, and volunteers to balance safety, self-determination, and well-being.

Background: Community engagement is seen as key to citizen‐centred and sustainable healthcare systems as involving citizens in the designing, implementation and improvement of services and policies is thought to tailor these more closely to communities’ own needs and experiences. Organizations have struggled to reach out to and involve disadvantaged citizens. This paper examines how if, why, and when low‐income citizens wish to be involved.Methods: For this qualitative realist case‐study, 19 interviews (one dyad) were held with (20) low‐income citizens in two Dutch municipalities. Additionally, the results were discussed with a reference panel consisting of professionals and citizens to enrich the results and to ensure the results had face validity.Results: The results showed four different ways in which low‐income citizens wished to be involved: (a) in a practical/volunteer way; (b) as a buddy; (c) as a lay expert; (d) not involved at all. The factors affecting citizens’ interest and capacity to participate include citizens’ own experiences of the services they access and their personal situations, e.g. their mental or physical health, extent of financial crisis, family situation, home environment. None of the interviewees was currently involved, but all had ideas for improving health(care) services and policies. Citizens’ experiences of the services they accessed acted as a motivator for some to be involved as they wanted to ensure others would not have the same struggles, while for others their own needs and an apathetic system remained too high a barrier. To enable involvement, citizens need continued support for their own health(care) and financial situation, better communication and accessibility from services, practical support (e.g., training and bus passes) and recognition for their input (e.g., monetary compensation).Conclusion: The study shows that citizens’ experiences of the services they accessed influenced if and how they wanted to be involved with health and care services. Despite the fact that all participants had shared solid ideas for improving services and policies, they were hindered by a bureaucratic, impersonal and inaccessible system. Organizations seem to underestimate the required investments to reach out to low‐income citizens and the support required to ensure their involvement.Patient and Public Involvement (PPI) in Study: Citizens as well as PPI organizations were members of the reference panel who helped formulate the research questions and recruitment strategy. The local reference panel also helped to interpret and refine the initial findings.

Background: Staff members, and their attitudes, are crucial for providing person-centered care in residential care facilities for people with dementia. However, the literature on the attitudes of nursing staff regarding person-centered care is limited. The objective of this study is to explore the association between staff characteristics (age, education level, years of work experience and function, i.e., care or welfare) and staff attitudes toward perceived person-centered care provision and including informal caregivers in the caregiving process in residential care facilities. Methods: A convenience sample of 68 care staff – nurses and nurse assistants - welfare staff members – activity counselors, hostesses, and living room caretakers - of two residential care facilities filled out a questionnaire. Staff attitudes regarding perceived person-centered care were measured with the Person-centered Care Assessment Tool (P-CAT). Staff attitudes regarding informal care provision were measured with the Attitudes Toward Families Checklist (AFC). Multiple linear regression analysis explored the association between variables age, work experience, education, and function (care or welfare). Results: A higher age of staff was associated with a more negative attitude toward perceived person-centered care and informal care provision. Welfare staff had a more negative attitude toward the inclusion of informal caregivers than care staff. The perceived person-centered care provision of the care and welfare staff was both positive. Work experience and education were not associated with perceived person-centered care provision or informal care provision. Conclusion: This study is one of the first to provide insight into the association between staff characteristics and their attitude toward their perceived person-centered care provision and informal care provision. A higher age of both the care and welfare staff was associated with a more negative attitude toward their perceived person-centered care and informal care provision. Welfare staff had a less positive attitude toward informal care provision. Additionally, future studies, also observational studies and interview studies, are necessary to collect evidence on the reasons for negative attitudes of older staff members towards PCC and informal care giving, to be able to adequately target these reasons by implementing interventions that eliminate or reduce these negative attitudes.

Light therapy for older persons with dementia is often administered with light boxes, even though indoor ambient light may more comfortably support the diverse lighting needs of this population. Our objective is to investigate the influence of indoor daylight and lighting on the health of older adults with dementia living in long-term care facilities. A systematic literature search was performed within PubMed, CINAHL, PsycINFO, Web of Science and Scopus databases. The included articles (n=37) were published from 1991 to 2020. These articles researched the influence of existing and changed indoor light conditions on health and resulted in seven categories of health outcomes. Although no conclusive evidence was found to support the ability of indoor light to decrease challenging behaviors or improve circadian rhythms, findings of two studies indicate that exposure to (very) cool light of moderate intensity diminished agitation. Promising effects of indoor light were to reduce depressive symptoms and facilitate spatial orientation. Furthermore, there were indications that indoor light improved one’s quality of life. Despite interventions with dynamic lighting having yielded little evidence of its efficacy, its potential has been insufficiently researched among this study population. This review provides a clear and comprehensive description of the impact of diverse indoor light conditions on the health of older adults with dementia living in long-term care facilities. Variation was seen in terms of research methods, (the description of) light conditions, and participants’ characteristics (types and severity of dementia), thus confounding the reliability of the findings. The authors recommend further research to corroborate the beneficial effects of indoor light on depression and to clarify its role in supporting everyday activities of this population. An implication for practice in long-term care facilities is raising the awareness of the increased lighting needs of aged residents.