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Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods.

Abstract Background Despite the increasing longevity of the world’s population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden. Methods The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used. Empirical studies on patients 60 years or older, next of kin or staff participating in a palliative care intervention or setting were included. They were conducted in mainland China or in Sweden during 2007–2019, were published in English and were extracted from seven databases: Embase, PubMed, Scopus, Cinahl, PsycInfo, Academic Search Complete and Cochrane Library. Two independent researchers conducted the selection of studies, data extraction and methodological evaluation. Any disagreements were resolved in consultation with a third researcher. The analysis was manifest directed content analysis based on PICOS domains. Results Of the 15 studies, four were from mainland China and 11 from Sweden. Both countries included older patients with cancer but also other end-stage diseases such as heart failure and dementia. The studies differed in design, method and the content of the interventions. The study in China based on traditional Chinese medicine concerns traditional Chinese folk music. The six qualitative studies from Sweden were evaluations of five interventions. Conclusions Despite the high age of the participating patients, there was no focus on an ageing perspective concerning palliative care. To adapt to the changes taking place in most societies, future research should have increased focus on older persons’ need for palliative care and should take account of issues concerning research ethics, ethnicity and culture. Registered in Prospero CRD42020078685 , available from.

Abstract Background Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. Methods A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. Results One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. Conclusion This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. Trial registration Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.

Abstract Aim To assess the quality of life in frail older persons (65+ years) living in nursing homes and to examine differences between quality of life perceptions among different gender and age groups. Design Cross‐sectional. Methods Data were collected during 2015‐2017 based on two questionnaires (WHOQOL‐OLD and WHOQOL‐BREF). Seventy‐eight older persons living in nursing homes in southern Sweden answered the questionnaires in structured interviews. Descriptive and comparative statistics were used to analyse the data. The study was guided by Transparent Reporting of Evaluations with Nonrandomized Designs (TREND) guidelines. Results The frail older persons reported low autonomy related to few opportunities to engage in everyday activities and were unable to do the things they liked to do and not feeling in control of their future. Another important result was that frail older persons seemed to have no or little fear of death and dying. No significant differences between gender or age on quality of life were revealed.

Abstract Aims To describe and compare perceptions of collaboration between care providers on the part of three groups of Registered Nurses working in municipal care and having particular responsibility concerning the care of frail older people with intellectual disability (ID); and, furthermore, to investigate the presence of and compliance with guidelines for the coordination of care. Design National survey study with cross‐sectional design. Methods Nurses (N = 110) with key positions concerning people with ID answered a national questionnaire about collaboration, guidelines and coordinated individual plans. Descriptive and comparative statistical analyses were applied. Results The meetings on cooperation and coordination of interventions were attended most frequently by nurses, and least frequently by social workers. The nurses were overall satisfied with the collaboration but perceived shortcomings in the case of inpatient and outpatient psychiatric care. Only in about half of the meetings for making care plans participated the people with intellectual disability and next of kin.

Abstract Background Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life. Aim To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes. Methods This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4). Results The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there. Conclusions This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life. Trial registration NCT02708498 Date of registration 16 February 2016.

Abstract Aim To evaluate person‐centeredness in nursing homes from the perspective of frail older persons, before and after implementing an educational intervention about palliative care. Design A crossover design. Methods Forty‐four older persons living in nursing homes were interviewed. A convergent mixed‐method was used to analyse data. Results The older persons expressed feelings of unsafety related to shortcomings in staff. These shortcomings implied that the responsibilities of everyday activities and making the residents’ existence more bearable were transferred to the next of kin. The dropout rate related to death and not enough energy was considerably high (51%) even though one of the inclusion criteria was to have enough energy to manage a 1‐hr interview. This result supports previous research describing the difficulties in retaining older persons in research and indicated that the dose of the intervention was not sufficient to improve person‐centred care.

Abstract Background The needs of care based on palliative principles are stressed for all people with progressive and/or life-limiting conditions, regardless of age and the place in which care is provided. Person-centred palliative care strives to make the whole person visible and prioritizes the satisfaction of spiritual, existential, social, and psychological needs to the same extent as physical needs. However, person-centred palliative care for older persons in nursing homes seems to be sparse, possibly because staff in nursing homes do not have sufficient knowledge, skills, and training in managing symptoms and other aspects of palliative care. Methods This study aimed to evaluate whether an educational intervention had any effect on the staff’s perception of providing person-centred palliative care for older persons in nursing homes. Methods: A knowledge-based palliative care intervention consisting of five 2-h seminars during a 6-month period was implemented at 20 nursing homes in Sweden. In total, 365 staff members were participated, 167 in the intervention group and 198 in the control group. Data were collected using two questionnaires, the Person-centred Care Assessment Tool (P-CAT) and the Person-Centred Climate Questionnaire (PCQ-S), answered before (baseline) and 3 months after (follow-up) the educational intervention was completed. Descriptive, comparative, and univariate logistical regression analyses were performed. Results Both the intervention group and the control group revealed high median scores in all subscales at baseline, except for the subscale amount of organizational and environmental support in the P-CAT. The staff’s high rating level of person-centred care before the intervention provides limited space for further improvements at follow-up. Conclusion This study shows that staff perceived that managers’ and the organization’s amount of support to them in their everyday work was the only area for improvement in order to maintain person-centred care. The experiences among staff are crucial knowledge in understanding how palliative care can be made person-centred in spite of often limited resources in nursing homes. The dose and intensity of education activities of the intervention model need to be tested in future research to develop the most effective implementation model. Trial registration NCT02708498. Date of registration 26 February 2016.

Abstract Background Quality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was to 1) describe self-reported quality of life in persons with dementia at risk of nursing home admission. 2) describe subjective and objective aspects of quality of care, 3) investigate the significance of quality of care for quality of life. Methods A cross-sectional interview study design was used, based on questionnaires about quality of life (QoL-AD) and different aspects of quality of care (CLINT and quality indicators). The sample consisted of 177 persons with dementia living in urban and rural areas in Skåne County, Sweden. Descriptive and comparative statistics (Mann-Whitney U-test) were used to analyse the data. Results Based upon Lawton’s conceptual framework for QoL in older people, persons with pain showed significantly lower quality of life in the dimensions behavioural competence (p = 0.026) and psychological wellbeing (p = 0.006) compared with those without pain. Satisfaction with care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling. Conclusion This study indicates need for improvements in home care and services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home.