Always on alert: How relatives of family members with dementia experience the transition from home to permanent nursing home placement.

AIM: Our aim was to gain insight into how the relatives of family members with dementia have experienced their family members' transition from home to permanent nursing home placement. DESIGN: Our research was a qualitative case study. METHODS: Inspired by Kvale and Brinkmann's phenomenological-hermeneutic approach, we performed the thematic analysis of semi-structured interviews describing how the relatives of family members with dementia have experienced the dementia trajectory. RESULTS: Twelve relatives of family members with dementia living in nursing homes agreed to participate. The descriptions of relatives' experiences indicated four primary themes: mismatches between healthcare services and the family members' needs, witnessing the family members' cognitive decline, the effects of the experiences on the relatives' health and well-being and what matters to the relatives during their family members' transition to nursing home. Mismatches between available resources in the municipalities and the family members' healthcare needs were the most distressing experiences, along with the family members' gradual cognitive decline. In response, the relatives stressed individualized support, continuity in follow-up care and regular information-sharing between them and staff members caring for their family members. They also highlighted the importance of facilitating seamless transitions from home to nursing homes.

The solitary and uncertain learning process: A qualitative study of nursing students' experiences in the initial phase of the COVID-19 pandemic.

When the Coronavirus disease 2019 (COVID-19) pandemic broke out, the nursing students clinical practice period was abruptly interrupted by the lock down. The present study aimed to investigate the nursing students' learning experiences during the initial phase of the pandemic. A qualitative study was conducted investigating nursing students' written assignments (n = 48) of reflections according to their learning process. The qualitative data analysis revealed three main themes, namely the solitary and uncertain learning process; from collective learning process to digital devices; additional learning outcomes. The students' anxiety about the virus affected their motivation to study, but they also expressed enthusiasm and gratitude for having the opportunity to learn about the health system in a time of crisis. These results point towards the health care authorities can rely on nursing students' ability to take part and cover important emergency functions. The use of technology helped the students to achieve their learning objectives.

Different senses of one's place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia.

Western dementia care policies emphasise that family caregivers from minority ethnic backgrounds must become more engaged in healthcare services. However, research exploring experiences of receiving services such as home-based care, and thus adjustment to the service, among family caregivers from minority ethnic backgrounds who have relatives with dementia is still scarce. Therefore, inspired by Pierre Bourdieu's theoretical concepts of field, habitus and capital, we explored how family caregivers from different minority ethnic backgrounds justified decisions about whether to receive home-based care and their social adjustment to the service. Using empirical data from semi-structured interviews with nine family caregivers from different minority ethnic backgrounds, we demonstrated that different mindsets and available social resources gave rise to various actions. Although some family caregivers were optimistic about receiving home-based care, our findings point to tensions between the ideals of care practices and the organisational structures surrounding home-based care as a service. Among those who had experiences with home-based care, we found that organisational limitations, particularly in terms of efficiency demands and time constraints, influenced their behaviours and thus their social adjustments to the service. For some, these limitations eventually resulted in cancellation of the service. However, not all had the same opportunities to make these decisions, indicating that, although family caregivers from minority ethnic backgrounds receive home-based care, this does not necessarily entail a deficiency-free service. Furthermore, we argue that public discourses on this subject can be challenged by encouraging one to look beyond ethnic and cultural labels towards other factors, such as organisational structures, that might largely influence the use of home-based care among these family caregivers.

Family caregivers' experiences of providing care for family members from minority ethnic groups living with dementia: A qualitative systematic review.

AIMS AND OBJECTIVES: To review the literature on family caregivers' experiences of providing care for a family member from an ethnic minority group living with dementia within the European context. BACKGROUND: Due to labour migration during the late 1960s and early 1970s, many European countries are now encountering an increasing number of older people from diverse ethnic minority groups who have been diagnosed with dementia. Although family care is predominantly used as a care pathway among families with immigrant backgrounds, little is known about family caregivers' experiences of providing care for a family member with dementia. DESIGN: A systematic review of qualitative literature. METHODS: Eight databases (CINAHL, EMBASE, MEDLINE, PsychINFO, SCOPUS, Social Care Online, SocIndex and Epistemonikos) were searched for original, peer-reviewed papers, published in English between 2010 and 2021. The literature review was conducted and reported in accordance with PRISMA 2020 checklist for reporting systematic reviews. RESULTS: After identifying, screening and assessing articles for eligibility, 14 articles were critically appraised using the standardised assessment tool Mixed methods Appraisal Tool (MMAT, version 2018) and included in the review. The data synthesis process identified four themes across the qualitative studies: controversies and challenges; a lack of health literacy; barriers to seeking support from the healthcare or social services; and models of care. CONCLUSIONS: Most of the family caregivers highlighted the value of being able to care for a family member living with dementia. However, the findings also reveal that they experience controversies and challenges due to their lack of dementia health literacy and perceived barriers to seeking healthcare support. RELEVANCE TO CLINICAL PRACTICE: The findings from the current review can inform healthcare and social services in relation to implementing models of care that facilitate and complement family caregivers' role in caring for family members living with dementia from minority ethnic groups.

'The desire for a harmonious interaction': A qualitative study of how healthcare professionals in community-based dementia teams perceive their role in reaching and supporting family caregivers from minority ethnic backgrounds.

AIMS AND OBJECTIVES: To explore how healthcare professionals in community-based dementia teams perceive their role in reaching and supporting family caregivers from minority ethnic backgrounds when caring for a family member suffering from dementia or cognitive impairment. BACKGROUND: Despite increased focus on barriers to accessing the dementia healthcare service for family caregivers from minority ethnic backgrounds, the lack of knowledge on how to address these barriers in order to reach and support this group is evident. DESIGN: The study has a qualitative, explorative design. The principles of consolidated criteria for reporting qualitative research (COREQ) were applied for reporting methods and findings. METHODS: Based on data from semi-structured interviews (n = 9) conducted in two large Norwegian municipalities, a thematic analysis influenced by Braun and Clarke was used. The analytical findings draw on Pierre Bourdieu's theoretical concepts of field, habitus and capital. FINDINGS: 'The desire for a harmonious interaction' was identified as an overarching theme. However, while desirable, the analysis shows that healthcare professionals in community-based dementia teams do not always succeed in reaching and supporting family caregivers from minority ethnic backgrounds. The study reveals that the dementia healthcare service is a complex, normative and sometimes rigid system that requires a number of distinct attributes to navigate. CONCLUSIONS: The different social structures within the dementia healthcare service can both create and retain barriers that prevent family caregivers from minority ethnic backgrounds from receiving support on their own terms. RELEVANCE TO CLINICAL PRACTICE: A practical implication of allowing critical reflection on the dementia healthcare service is that it provides opportunities for discussion. Healthcare professionals in community-based dementia teams need to reflect on how normative ideals and 'taken-for-granted' mindsets can affect their ability to reach and support family caregivers from minority ethnic backgrounds.

Interactions between healthcare personnel and family caregivers of people with dementia from minority ethnic backgrounds in home-based care-An explorative qualitative study.

AIMS: To explore how healthcare personnel in home-based care perceive interactions with family caregivers of people with dementia from minority ethnic backgrounds. BACKGROUND: Research shows that the organization of home-based care rarely allows opportunities to provide support to family caregivers in practice. However, how these organizational structures influence the way in which healthcare personnel perceive their interactions with family caregivers of people with dementia from minority ethnic backgrounds remains an unexplored area. DESIGN: An explorative qualitative study inspired by a critical realist approach using Pierre Bourdieu's theoretical concepts of field, habitus and capital. METHODS: Data were collected through individual semi-structured interviews with six nurses and four auxiliary nurses employed in home-based care in Norway. The data were analysed using a thematic analysis approach. The participants were recruited in September and October 2020. FINDINGS: 'Family caregivers perceived as facilitators of or barriers to collaborative care' was identified as an overarching theme, supported by two main themes: 'Preconditions for successful collaboration' and 'Challenges for collaborative relationships'. The findings revealed that the participants mainly focused their attention on the dementia patients from minority ethnic backgrounds, while they felt that the family caregivers influenced the way in which they provided healthcare. CONCLUSIONS: The findings demonstrate that timesaving strategies have a major influence on healthcare personnel's perceptions of family caregivers from minority ethnic backgrounds. Attention towards the needs of the family caregivers was often replaced by evaluations of their usefulness in the provision of healthcare to the dementia patients. IMPACT: This study raises concerns about home-based care as a rigid and inflexible system. It therefore provides opportunities to raise questions on status quo, stimulate debate and encourage fresh thinking with regards to the support and inclusion of family caregivers in the home-based care system for people with dementia from minority ethnic backgrounds.

Patient satisfaction with information provided by epilepsy specialist nurses: Results of an online survey.

The aim of this study was to investigate the perspective of Norwegian patients with epilepsy regarding the information that they have received about epilepsy-related issues and to determine whether there was a difference in information received between those who had been followed up by an epilepsy specialist nurse (ESN) and those who had not. Further, were there differences regarding satisfaction with the information between the two groups? We conducted an online survey in close collaboration with the Norwegian Epilepsy Association. A total of 1859 respondents (1182 patients with epilepsy and 677 carers for patients with epilepsy) completed a web-based questionnaire. They were asked about epilepsy-related issues on which they had received information, the extent to which they were satisfied with this information, and whether they were being followed up by an ESN or not. Significantly more patients followed up by an ESN had received information about the epilepsy diagnosis, antiseizure drugs (ASDs), routine use of ASD, and risk of seizure-related injuries as compared to those not followed up by an ESN. In addition, patients followed by an ESN were more likely to be satisfied with the information they received. Just above or under half of the respondents had received or were satisfied with information about depression, anxiety, premature death, and sexual wellbeing. Our results indicate that follow-up by ESNs results in improvements in the information provided to patients with epilepsy; ESNs should be an integral part of comprehensive epilepsy service.

The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial.

BACKGROUND: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention. METHODS: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia. RESULTS: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period. CONCLUSIONS: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver. TRIAL REGISTRATION: Clinical.Trials.gov Sept. 2009, NCT01287767.

Experience of companionship among family caregivers of persons with dementia: A qualitative study.

We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39-92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources. The caregivers described their companionship with the family member, including warm feelings of reciprocity, as well as contradictory feelings, such as feelings of being burdened. They expressed a desire to continue caring for their relative and emphasized the positive aspects of their relationship. Knowledge about dementia, together with a good relationship with their ill family member, facilitated the caring role. These results highlight the importance of receiving information about dementia-related challenges and the implications of being a caregiver.

A review of self-rated generic quality of life instruments used among older patients receiving home care nursing.

In the last two decades, quality of life and health-related quality of life have become commonly used outcome measures in the large number of studies evaluating healthcare and home care nursing. The objective of this systematic search and review was to evaluate studies that include self-rated generic quality of life instrument used among elderly patients receiving home care nursing. Searches were conducted in Medline, Embase, PsycINFO and Cinahl for articles published between January 2005 and June 2016, with 17 studies in eight countries meeting the inclusion criteria and assessed for quality. Overall, the review shows great variations in the included studies regarding characteristics of the participants and place of origin, the generic quality of life instruments applied and their dimensions. In this review, we raise the question of whether the generic questionnaires used to measure quality of life do in fact measure what is essential for quality of life in elderly users of home care nursing. The psychological and physical dimensions of quality of life were assessed in almost all included studies, while older-specific dimensions like autonomy, control and sensation were less frequently assessed. There is reason to believe that generic quality of life instruments frequently do not capture the dimensions that are most important for elderly people with health problems in need of home care nursing.

Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study.

This cross-sectional study aimed to investigate the relationship between caregivers and care receivers, defined as home-dwelling family members with dementia. We used a self-rating questionnaire, the Felt Expressed Emotion Rating Scale (FEERS; 6 simple questions), to measure caregiver perceptions of the care receiver's criticisms (CCs) and emotional overinvolvement (EOI) toward the caregiver. We performed factor analyses to rank single items on the FEERS pertaining to CC and EOI. We included 208 caregiver/care receiver pairs. Logistic regression analyses tested associations between FEERS items and caregiver and care receiver variables. The main contributors to caregiver perceptions of CC were the caregiver's own distress and the amount of time spent with the care receiver. Socially distressed caregivers perceived the care receiver as emotionally overinvolved. When offering a psychosocial intervention, a tailored program should target the caregiver's perceived relationship with the family member and the caregiver's distress. The program should also endeavor to give the caretaker more opportunities for leisure time.