How Stories Can Contribute Toward Quality Improvement in Long-Term Care.

It is important to evaluate how residents, their significant others, and professional caregivers experience life in a nursing home to improve quality of care based on their needs and wishes. Narratives are a promising method to assess this experienced quality of care as they enable a rich understanding, reflection, and learning. In the Netherlands, narratives are becoming a more substantial element within the quality improvement cycle of nursing homes. The added value of using narrative methods is that they provide space to share experiences, identify dilemmas in care provision, and provide rich information for quality improvements. The use of narratives in practice, however, can also be challenging as this requires effective guidance on how to learn from this data, incorporation of the narrative method in the organizational structure, and national recognition that narrative data can also be used for accountability. In this article, 5 Dutch research institutes reflect on the importance, value, and challenges of using narratives in nursing homes.

What matters most: Exploring the everyday lives of people with dementia.

OBJECTIVES: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. METHODS: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co-researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. FINDINGS: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. CONCLUSIONS: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person-centred support.

Learning as a way of achieving quality improvement in long-term care: A qualitative evaluation of The Story as a Quality Instrument.

AIM/OBJECTIVE: This study aimed to evaluate the use of the narrative quality instrument 'The Story as a Quality Instrument' (or SQI) for learning as a way of achieving quality improvement. BACKGROUND: Learning is a widespread aim in long-term care. If professionals share detailed information about their views on the quality of care, they can see it from each other's perspective and create a new joint perspective that may generate a broader meaning in total. One useful source for learning and improvement is the narratives of older adults. These narratives enable reflection and learning, which encourages action. In care organizations, there is a drive to find methods that can be used to facilitate learning and encourage quality improvement. DESIGN: A qualitative evaluation design. METHODS: Data collection was performed in 2021-2022 at six field sites of four large care organizations providing long-term care to older adults in the Netherlands. At each field site, SQI was applied: an action plan was formulated in a quality meeting and, 8-12 weeks later, the progress was evaluated in a follow-up meeting. The data collected was participants' responses during focus groups: the verbatim transcripts of both meetings and the observation reports of the researchers. 46 participants took part in the quality meetings and 34 participants were present at the follow-up meetings. The data was analyzed using thematic analysis. RESULTS: The results are mechanisms that help learning, participant responses, and practical challenges and conditions. Four mechanisms became visible that encourage learning among participants for achieving quality improvements: in-depth discussions, exchange of perspectives, abstraction, and concretization. The participants listed several outcomes regarding individual learning such as change of attitude, viewing older adults more holistically and the realization that possibilities for working on quality improvement could be just a small and part of everyday work. Participants learned from each other as they came to understand each other's perspectives. The added value lay in getting insights into the individual perceptions of clients, the concrete areas for improvement as an outcome, and getting a picture of the perspectives of diverse people and functions represented. Time was found to be the main challenge when applying SQI. CONCLUSIONS: SQI is deemed promising for practice, as it allows care professionals to learn in their workplace in a structured way from narratives of older adults in order to improve the quality of care.

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review.

Increasing attention has been paid to the 'voice' of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider's perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

Health impact of the first and second wave of COVID-19 and related restrictive measures among nursing home residents: a scoping review.

BACKGROUND AND OBJECTIVES: COVID-19 disproportionally affects older adults living in nursing homes. The purpose of this review was to explore and map the scientific literature on the health impact of COVID-19 and related restrictive measures during the first and second wave among nursing home residents. A specific focus was placed on health data collected among nursing home residents themselves. RESEARCH DESIGN AND METHODS: In this study, best practices for scoping reviews were followed. Five databases were systematically searched for peer-reviewed empirical studies published up until December 2020 in which data were collected among nursing home residents. Articles were categorized according to the type of health impact (physical, social and/or psychological) and study focus (impact of COVID-19 virus or related restrictive measures). Findings were presented using a narrative style. RESULTS: Of 60 included studies, 57 examined the physical impact of COVID-19. All of these focused on the direct impact of the COVID-19 virus. These studies often used an observational design and quantitative data collection methods, such as swab testing or reviewing health records. Only three studies examined the psychological impact of COVID-19 of which one study focused on the impact of COVID-19-related restrictive measures. Findings were contradictory; both decreased and improved psychological wellbeing was found during the pandemic compared with before. No studies were found that examined the impact on social wellbeing and one study examined other health-related outcomes, including preference changes of nursing home residents in Advanced Care planning following the pandemic. DISCUSSION AND IMPLICATIONS: Studies into the impact of the first and second wave of the COVID-19 pandemic among nursing home residents predominantly focused on the physical impact. Future studies into the psychological and social impact that collect data among residents themselves will provide more insight into their perspectives, such as lived experiences, wishes, needs and possibilities during later phases of the pandemic. These insights can inform policy makers and healthcare professionals in providing person-centered care during the remaining COVID-19 pandemic and in future crisis periods.

How staff characteristics influence residential care facility staff's attitude toward person-centered care and informal care.

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.

Coping Strategies Used by Older Adults to Deal with Contact Isolation in the Hospital during the COVID-19 Pandemic.

Due to the COVID-19 pandemic, many older adults have experienced contact isolation in a hospital setting which leads to separation from relatives, loss of freedom, and uncertainty regarding disease status. The objective of this study was to explore how older adults (55+) cope with contact isolation in a hospital setting during the COVID-19 pandemic in order to improve their physical and psychological wellbeing. The realist evaluation approach was used to formulate initial program theories on coping strategies used by (older) adults in an isolation setting. Twenty-one semi-structured interviews with older patients (n = 21) were analysed. This study revealed that both emotion-focused coping strategies as well as problem-focused coping strategies were used by older adults during contact isolation. The study also uncovered some new specific coping strategies. The results have useful implications for hospital staff seeking to improve the wellbeing of older adults in contact isolation in hospitals. Problem-focused coping strategies could be stimulated through staff performing care in a person-centred way. Trust in staff, as part of emotion-focused coping strategies, could be stimulated by improving the relationship between patients and staff.

The Story as a Quality Instrument: Developing an Instrument for Quality Improvement Based on Narratives of Older Adults Receiving Long-Term Care.

The individual experiences of older adults in long-term care are broadly recognized as an important source of information for measuring wellbeing and quality of care. Narrative research is a special type of qualitative research to elicit people's individual, diverse experiences in the context of their lifeworld. Narratives are potentially useful for long-term care improvement as they can provide a rich description of an older adult's life from their own point of view, including the provided care. Little is known about how narratives can best be collected and used to stimulate learning and quality improvement in long-term care for older adults. The current study takes a theoretical approach to developing a narrative quality instrument for care practice in order to discover the experiences of older adults receiving long-term care. The new narrative quality instrument is based on the available literature describing narrative research methodology. The instrument is deemed promising for practice, as it allows care professionals to collect narratives among older adults in a thorough manner for team reflection in order to improve the quality of care. In the future, the feasibility and usability of the instrument will have to be empirically tested.

Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study.

BACKGROUND: Although participatory research is known to have advantages, it is unclear how participatory research can best be performed. This study aims to report on lessons learned in collaboration with service users involved as co-researchers in three participatory teams in long-term care. METHODS: A multiple case study design was chosen to explore the collaboration in three teams, each covering one specific client group receiving long-term care: physically or mentally frail elderly people, people with mental health problems or people with intellectual disabilities. RESULTS: A good working environment and a good collaboration were found to be crucial requirements for participatory research. A good working environment was developed by discussing reasons for engagement and wishes, formulating basic rules, organizing training sessions, offering financial appreciation, and the availability of the researcher to give travel support. The actual collaboration was established by developing a bond and equal positioning, deciding on the role division, holding on to transparency and a clear structure, and have sufficient time for the collaboration. Moreover, the motivations and unique contributions of the co-researchers and differences between the teams were reported. The motivations of co-researchers ranged from individual goals - such as personal development, creating a new social identity and belonging to a social group - to more external goals, such as being valuable for other service users and increasing the quality of care. An inclusive collaboration required valuing the individual contributions of co-researchers and adjustment to team differences. CONCLUSIONS: The results showed the importance of developing a good working environment and establishing a good collaboration for participatory research. Furthermore, the study shows that individual and team differences should be taken into account. These results can be used by researchers for designing and shaping future research projects in long-term care in collaboration with co-researchers.

Qualitative instruments involving clients as co-researchers to assess and improve the quality of care relationships in long-term care: an evaluation of instruments to enhance client participation in quality research.

OBJECTIVES: Enhancing the active involvement of clients as co-researchers is seen as a promising innovation in quality research. The aim of this study was to assess the feasibility and usability of five qualitative instruments used by co-researchers for assessing the quality of care relationships in long-term care. DESIGN AND SETTING: A qualitative evaluation was performed in three care organisations each focused on one of the following three client groups: frail older adults, people with mental health problems and people with intellectual disabilities. A total of 140 respondents participated in this study. The data comprised observations by researchers and experiences from co-researchers, clients and professionals. RESULTS: Two instruments scored best on feasibility and usability and can therefore both be used by co-researchers to monitor the quality of care relationships from the client perspective in long-term care. CONCLUSIONS: The selected instruments let co-researchers interview other clients about their experiences with care relationships. The study findings are useful for long-term care organisations and client councils who are willing to give clients an active role in quality improvement.

Correction to: Determinants of the quality of care relationships in long-term care - a systematic review.

In the original publication of this article [1], there is a layout mistake in the column "McCloughen et al. (2011)" of Table 2.

Determinants of the quality of care relationships in long-term care - a participatory study.

BACKGROUND: The quality of the care relationship between a client and a professional is important in long-term care, as most clients depend on support for a lengthy period. The three largest client groups who receive long-term care in the Netherlands are older adults who are physically or mentally frail, people with mental health problems and people with intellectual disabilities. There is little clarity about how generic and variable the determinants of the quality of care relationships are across these client groups. The aim of this study is to explore and compare the determinants of the quality of care relationships in these three client groups in long-term care. METHODS: This participatory study involving clients as co-researchers was held in three healthcare organizations, each providing long-term care to one client group. The research was conducted by three teams consisting of researchers and co-researchers. We interviewed clients individually and professionals in focus groups. The focus was on care relationships with professionals where there is weekly recurring contact for at least 3 months. Clients and professionals were selected using a convenience sample. The interviews were coded in open, axial and selective coding. The outcomes were compared between the client groups. RESULTS: The study sample consisted of 30 clients and 29 professionals. Determinants were categorized into four levels: client, professional, between client and professional, and context. The findings show that the majority of the determinants apply to the care relationships within all three client groups. At the professional level, eleven generic determinants were found. Eight determinants emerged at the client level of which two were found in two client groups only. At the level between a client and a professional, six determinants were found of which one applied to mental healthcare and disability care only. Five determinants were found at the contextual level of which two were specific for two client groups. CONCLUSIONS: The study yielded a variety of determinants that came to the fore in all three client groups in long-term care. This suggests that including a homogenous client group from a single care setting is not necessary when studying the quality of long-term care relationships.

Protocol for a participatory study for developing qualitative instruments measuring the quality of long-term care relationships.

INTRODUCTION: In long-term care (LTC), it is unclear which qualitative instruments are most effective and useful for monitoring the quality of the care relationship from the client's perspective. In this paper, we describe the research design for a study aimed at finding and optimising the most suitable and useful qualitative instruments for monitoring the care relationship in LTC. METHODS AND ANALYSIS: The study will be performed in three organisations providing care to the following client groups: physically or mentally frail elderly, people with mental health problems and people with intellectual disabilities. Using a participatory research method, we will determine which determinants influence the quality of a care relationship and we will evaluate up to six instruments in cooperation with client-researchers. We will also determine whether the instruments (or parts thereof) can be applied across different LTC settings. ETHICS AND DISSEMINATION: This study protocol describes a participatory research design for evaluating the quality of the care relationship in LTC. The Medical Ethics Committee of the Radboud University Nijmegen Medical Centre decided that formal approval was not needed under the Dutch Medical Research Involving Human Subjects Act. This research project will result in a toolbox and implementation plan, which can be used by clients and care professionals to measure and improve the care relationship from the client's perspective. The results will also be published in international peer-reviewed journals.

Determinants of the quality of care relationships in long-term care - a systematic review.

BACKGROUND: The quality of a care relationship between a client and a care professional is seen as fundamental if high-quality care is to be delivered. This study reviews studies about the determinants of the quality of the client-professional relationship in long-term care. METHODS: A systematic review was performed using the electronic databases of Medline, Psycinfo, CINAHL and Embase. The review focused on three client groups receiving long-term care: physically or mentally frail elderly, people with mental health problems and people with physical or intellectual disabilities. Included studies concern clients receiving inpatient or outpatient care and care professionals who provided recurring physical and supporting care for a long period of time. The studies we included contained primary empirical data, were written in English and were published in peer-reviewed journals. Data extraction was carried out by two researchers independently. RESULTS: Thirty-two studies out of 11,339 initial hits met the inclusion criteria. In total, 27 determinants were revealed, six at the client level, twelve at the professional level, six between the client and care professional levels and three at the contextual level. The data analysis showed that most determinants were relevant in more than one client group. CONCLUSIONS: This is the first review that looked at determinants of the quality of the care relationship for three large client groups receiving long-term care. It suggests that the current client group-specific focus in research and quality improvement initiatives for care relationships might not be needed. Care organisations can use the findings of this review as guidance on determinants to look for when mapping the quality of a care relationship in order to get a picture of specific points of attention for quality improvement.