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

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

Abstract 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

Everyday experiences of people living with MCI or dementia:A scoping review

Background Increasing attention has been paid to the ‘voice’ of people living with MCI or dementia, but there is a lack of clarity about how everyday life is exercised, lived, and understood from this insider’s perspective. The current study aimed to explore and identify the everyday life experiences, challenges and facilitators, of home living individuals with MCI and dementia. Method Our study adopted a scoping review methodology, guided by the Joanna Briggs Institute Reviewers Manual. Eight databases were searched, resulting in 6345 records, of which 58 papers were included in the review. Only qualitative studies were included, published between 2011 and 2021. Analysis was done by descriptive content analysis. Result Included study characteristics are summarized in Table 1. Our findings were categorized into seven spheres of everyday life: experiences related to the condition, the self, relationships, activities, environment, health and social care, and public opinions [Figure 1, Table 2]. Results show the many disruptions and losses in everyday life and the ways people try to adapt to these changes. Highlighted in every area is the importance of reciprocal relationships and being engaged as citizens in the community in a meaningful way. Included studies showed no differences between groups in the impact on the experience of everyday life, such as between MCI and dementia. Conclusion This review shows that the change of focus from healthcare to all aspects of everyday life provides insight into the insider’s perspective of people living with dementia. The majority of included studies emphasize the social needs of people living with MCI or dementia. All areas of everyday life seem to be closely intertwined and reflect an socioecological model [1], [2], [3]. Furthermore, perhaps one of the defining aspects of MCI according to the current definition, that symptoms do not interfere with daily life, requires more nuance. More research is needed on factors that promote and impede the sense of reciprocity and belonging, as experienced by people living with MCI and dementia

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

Abstract 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

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

How stories can contribute towards 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 in order 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, five Dutch research institutes reflect on the importance, value and challenges of using narratives in nursing homes.</p

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