BACKGROUND: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care.

METHODS/DESIGN: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations.

DISCUSSION: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing.

TRIAL REGISTRATION: NCT02708498 .

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

The overall aim of this thesis was to evaluate the effects of health-promoting and disease-preventive interventions on health and frailty in very old community-dwelling persons, and to explore the participants’ experiences in relation to these interventions. Studies I and II were evaluations of the three-armed randomised, single-blind and controlled trial Elderly Persons in the Risk Zone, which consisted  of the two health-promoting and disease-preventive interventions preventive home visits (PHV) and multi-professional senior group meetings (senior meetings). A total of 459 persons aged 80 years or older and still living at home were included in the study. Participants were independent in ADL and without overt cognitive impairment. They were assessed at baseline and followed up at one and two years after intervention. An intention-to-treat analysis was performed using the outcome variables; morbidity, symptoms, self-rated health, satisfaction with health (study I), frailty measured as tiredness in daily activities and frailty measured with eight frailty indicators (study II). In study III, seventeen participants in the intervention preventive home visits were interviewed in their own homes. The interviews were analysed using a phenomenographic method. In study IV focus group methodology was used to interview a total of 20 participants who had participated in the intervention senior meetings. The interviews were analysed according to the focus group method described by Kreuger.  The results of studies I and II showed that both interventions postponed morbidity and delayed deterioration in satisfaction with physical and psychological health for up to two years compared to the control group. Both interventions also showed favourable effects in postponing the progression of frailty measured as tiredness in daily activities for up to one year. The intervention senior meetings had an advantage over preventive home visits since it prevented a decline in general self-rated health for up to one year. However, neither of the interventions was effective in postponing the progression of symptoms or frailty as measured with the sum of frailty indicators. The participants that were defined as frail according to frailty indicators (>3 indicators) increased in all three study arms during the two-year study period. The interviews with the participants involved in the intervention preventive home visits (study III) revealed four categories which explained how they experienced the visit and its consequences for health: the PHV made them visible and proved their human value, it brought a feeling of security and gave the participants an incentive to action. A few of the participants experienced that the PHV was of no value. The focus group interviews with the participants who had received the senior meetings (study IV) revealed that the participants lived in the present. However, the supportive environment together with learning a preventive approach contributed to the participants’ experiencing the senior meetings as a key to action.  In conclusion, the studies in this thesis show that it is possible to postpone a decline in health outcomes measured as morbidity, self-rated health, satisfaction with health and frailty measured as tiredness in daily activities in older persons at risk of frailty. Both interventions might have functioned as a trigger to motivate the participants to engage in a health-promoting behaviour. The contributing factors were the holistic information, the fact that participants were strengthened in their role as older persons, that someone cared about their health, and the fact that the interventions focused on personal needs. The senior meetings were the most beneficial intervention, which may be due to the group setting where the participants could learn from each other, gain role models and share their problems. Altogether this could have increased participants’ understanding and ability to use their own resources and may have motivated them to take measures and engage in health-promoting activities

BACKGROUND: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.

AIM: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.

METHODS: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.

RESULTS: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.

CONCLUSIONS: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.

OBJECTIVE: Very old persons (80+) are often described as "frail", implying that they are particularly vulnerable to adverse health outcomes. Elderly Persons in the Risk Zone was designed to determine whether a preventive home visit or multiprofessional senior group meetings could postpone deterioration in frailty if the intervention is carried out when the person is not so frail.

DESIGN AND SAMPLE: The study was a RCT with follow-ups at 1 and 2 years. A total of 459 persons (80+), still living at home, were included. Participants were independent in activities of daily life and cognitively intact.

MEASURES: Frailty was measured in two complementary ways, with the sum of eight frailty indicators and with the Mob-T Scale measuring tiredness in daily activities.

RESULTS: Both interventions showed favorable effects in postponing the progression of frailty measured as tiredness in daily activities for up to 1 year. However, neither of the two interventions was effective in postponing frailty measured with the sum of frailty indicators.

CONCLUSIONS: The results in this study show the potential of health promotion to older persons. The multiprofessional approach, including a broad spectrum of information and knowledge, might have been an important factor contributing to a more positive view of aging.

BACKGROUND: As more people reach older age, there is a growing interest in improving old person's health, activity, independence and social participation, thereby adding quality to the extended years. Preventive home visits (PHV) programs for old people have received much attention in recent decades. A large body of research shows mixed effects, and argues that a home visit is a complex social process influenced by numerous factors. To evaluate the impact of PHV, as well as making decisions on whether, how, and to whom the service should be provided, requires a deeper understanding of PHV than we have now. Consequently, the aim of the study was to describe the variations in older people's (80+) experiences of a single preventive home visit and its consequences for health.

METHODS: Seventeen participants between 80 and 92 years of age who had all received a structured PHV were interviewed in their own homes. The interviews were analyzed using the phenomenographic method, looking at the variations in the participants' experiences.

RESULTS: The interviews revealed four categories: "The PHV made me visible and proved my human value"; "The PHV brought a feeling of security"; "The PHV gave an incentive to action"; and "The PHV was not for me".

CONCLUSIONS: The experiences of a PHV were twofold. On one hand, the positive experiences indicate that one structured PHV was able to empower the participants and strengthen their self-esteem, making them feel in control over their situation and more aware of the importance of keeping several steps ahead. Together this could motivate them to take measures and engage in health-promoting activities. On the other hand, the PHV was experienced as being of no value by a few. These findings may partly explain the positive results from PHV interventions and emphasize that one challenge for health care professionals is to motivate older people who are healthy and independent to engage in health-promoting and disease-preventive activities.

UNLABELLED: The aim of this study was to analyze the long-term effect of the two health-promoting and disease-preventive interventions, preventive home visits and senior meetings, with respect to morbidity, symptoms, self-rated health and satisfaction with health. The study was a three-armed randomized, single-blind, and controlled trial, with follow-ups at one and two years after interventions. A total of 459 persons aged 80 years or older and still living at home were included in the study. Participants were independent in ADL and without overt cognitive impairment. An intention-to-treat analysis was performed. The result shows that both interventions delayed a progression in morbidity, i.e. an increase in CIRS-G score (OR=0.44 for the PHV and OR=0.61 for senior meetings at one year and OR=0.60 for the PHV and OR=0.52 for the senior meetings at two years) and maintained satisfaction with health (OR=0.49 for PHV and OR=0.57 for senior meetings at one year and OR=0.43 for the PHV and OR=0.28 for senior meetings after two years) for up to two years. The intervention senior meetings prevented a decline in self-rated health for up to one year (OR=0.55). However, no significant differences were seen in postponing progression of symptoms in any of the interventions. This study shows that it is possible to postpone a decline in health outcomes measured as morbidity, self-rated health and satisfaction with health in very old persons at risk of frailty. Success factors might be the multi-dimensional and the multi-professional approach in both interventions.

PURPOSE: This study was intended to evaluate a multi-professional health-promoting and disease-preventive intervention organized as multi-professional senior group meetings, which addressed home-dwelling, independently living, cognitively intact elderly persons (80±), by exploring the participants' experiences of the intervention.

METHOD: The focus group methodology was used to interview a total of 20 participants. The informants had participated in four multi-professional senior group meetings at which information about the ageing process and preventive strategies for enhancing health were discussed.

RESULTS: The overall finding was that the elderly persons involved in the intervention lived in the present, but that the supportive environment together with learning a preventive approach contributed to the participants' experiencing the senior meetings as a key to action.

CONCLUSIONS: Elderly persons who are independent may have difficulty accepting information about preventing risks to health. However, group education with a multi-professional approach may be a successful model for achieving an exchange of knowledge, which may possibly empower the participants, give them role models, the opportunity to learn from each other and a sense of sharing problems with people in similar circumstances.

OBJECTIVES: The aim of the study was to evaluate the psychometric properties of a Chinese translation of the English version of the Person-centred Climate Questionnaire - Staff version (PCQ-S) for Chinese palliative care staff in a hospital context.

DESIGN: This was a cross-sectional design. The 14-item English PCQ-S was translated and backtranslated using established procedures. Construct validity and reliability including internal consistency and test-retest reliability were assessed among hospital staff. Construct validity was tested using principal component analysis (PCA), internal consistency was assessed using Cronbach's alpha, and test-retest reliability was evaluated with the weighted kappa (Kp), Pearson correlation coefficient (r) and intra-class correlation coefficient (ICC).

SETTING: This study was conducted in three hospitals in Kunming, the capital of Yunnan province in south-west China.

PARTICIPANTS: A sample of hospital staff (n=163) on duty in the palliative care departments of three hospitals in Kunming consented to participate in the study.

RESULTS: The 14-item Chinese PCQ-S consists of the three subscales also present in other language versions. It showed strong internal consistency, with a Cronbach's alpha of 0.94 for the total scale, 0.87 for the safety subscale, 0.90 for the everydayness subscale and 0.88 for the community subscale. The Chinese PCQ-S had high test-retest reliability as evidenced by a high Kp coefficient and a high correlation coefficient for all scales between test and retest scores, on 'a climate of safety' (Kp=0.77, r=0.88, p<0.01), 'a climate of everydayness' (Kp=0.82, r=0.91, p<0.01), 'a climate of community' (Kp=0.75, r=0.79, p<0.01), and on overall scale scores (Kp=0.85, r=0.93, p<0.01). The ICC to evaluate the test-retest reliability was 0.97 (95% CI 0.95 to 0.98).

CONCLUSIONS: The Chinese version of the PCQ-S showed satisfactory reliability and validity for assessing staff perceptions of person-centred care in Chinese hospital environments.

BACKGROUND: Health-promoting interventions tailored to support older persons to remain in their homes, so-called "ageing in place" is important for supporting or improving their health. The health-promoting programme "Elderly Persons in the Risk Zone," (EPRZ) was set up for this purpose and has shown positive results for maintaining independence in activities of daily living for older persons 80 years and above at 1- and 2 year follow-ups. The aim of this study was to explore factors for maintaining independence in the EPRZ health-promoting programme.

METHODS: Total of 459 participants in the original trial was included in the analysis; 345 in the programme arm and 114 in the control arm. Thirteen variables, including demographic, health, and programme-specific indicators, were chosen as predictors for independence of activities of daily living. Logistic regression was performed separately for participants in the health promotion programme and in the control arm.

RESULTS: In the programme arm, being younger, living alone and self-rated lack of tiredness in performing mobility activities predicted a positive effect of independence in activities of daily living at 1-year follow-up (odds ratio [OR] 1.18, 1.73, 3.02) and 2-year, (OR 1.13, 2.01, 2.02). In the control arm, being less frail was the only predictor at 1-year follow up (OR 1.6 1.09, 2.4); no variables predicted the outcome at the 2-year follow-up.

CONCLUSIONS: Older persons living alone - as a risk of ill health - should be especially recognized and offered an opportunity to participate in health-promoting programmes such as "Elderly Persons in the Risk Zone". Further, screening for subjective frailty could form an advantageous guiding principle to target the right population when deciding to whom health-promoting intervention should be offered.

TRIAL REGISTRATION: The original clinical trial was registered at ClinicalTrials.gov. Identifier: NCT00877058 , April 6, 2009.

BACKGROUND: Being involved in the care of a loved one is a desire of many next of kin. However, according to several studies of the perceptions of nursing home staff, the involvement of next of kin is not an obvious part of care. To be able to involve next of kin in care at nursing homes, the perceptions of what participation means are an important piece of knowledge. The aim of this study was therefore to describe variations in next of kin's perceptions of the meaning of participation in the care of older persons living in nursing homes.

METHODS: Eighteen next of kin of older persons living in ten nursing homes in Sweden were recruited for interviews. The study design was based on a phenomenographic approach, focusing on the qualitatively different ways in which a person perceives, experiences or conceptualises a phenomenon or certain aspect of reality.

RESULTS: Five categories emerged from analysis of the interviews, representing the next of kin's perceptions of the meaning of participation in the care of older persons in nursing homes: be present; communicate; monitor; do practical tasks; and to represent. The next of kin expressed meanings that belonged to more than one category, and the categories were interdependent.

CONCLUSIONS: Our results indicate that there are several meanings of next of kin's perceptions of participation at nursing homes. Nursing home staff's knowledge of these perceptions is important to enable next of kin to participate according to their own preferences.

Bakgrund: Den åldrande befolkningen och den förväntade livslängden ökar såväl i Sverigesom i resten av världen och kraven på välfärdssystemet ökar. Forskning visar attdet är möjligt att förebygga sjukdom genom att påverka ogynnsamma levnadsvanoroch att främja goda levnadsvanor skapar förutsättningar och möjligheter att åldrasmed hälsa. Således är därför satsningar på hälsofrämjande och sjukdomsförebyggandearbete angeläget för att minska samhällets kostnader men även för att äldre ska bibehållasin hälsa och förmåga till egenvård.

Syfte: Att kartlägga oberoende äldre personers (77+) hälsa och levnadsvanor samtstudera skillnader utifrån ålder, kön och demografiskt läge.

Metod: En icke-experimentell tvärsnittsstudie med kvantitativ ansats som baseras på ett urval av 876 oberoende äldre, oberoende av vård och omsorg och som var hemmaboendei ordinärt boende i någon av de sju nordöstra kommunerna i Skåne, södra Sverige.

Resultat: Oberoende äldre skattade sin hälsa som god (76,3%) och deltagarna som var81 år och äldre skattade sin hälsa signifikant högre än de som var yngre. En signifikant skillnad har kartlagts gällande alkoholkonsumtion utifrån ålder och kön samt tobakgällande ålder.

Slutsats: Kartläggningen av oberoende äldres hälsa och levnadsvanor utifrån ålder, kön och demografiskt läge visade uppmuntrande resultat. Hälsan och levnadsvanor under åldrandet kan påverkas av flera faktorer. Med utgångspunkt från resultatet ärdet viktigt att distriktssköterskan samtalar och stödjer äldre till hälsosamma levnadsvanor.Fortsatt forskning förespråkas för att främja ett hälsosamt åldrande hos oberoende äldre personer.

OBJECTIVE: This study aims to test a Chinese cross-cultural adaptation of the English version of the Person-Centred Care Assessment Tool (P-CAT) and evaluate its psychometric properties.

DESIGN: P-CAT was translated/back-translated using established procedures before the psychometric evaluation of the Chinese version was made.

SETTING: Two hospitals covering urban and suburban areas of Kunming in the Yunnan province of China.

PARTICIPANTS: 152 female hospital staff completed the survey.

MAIN OUTCOME MEASURES: Construct validity and reliability, including internal consistency and test-retest reliability, were assessed among a sample of hospital staff.

RESULTS: The factor analysis resulted in a two-component solution that consisted of two subscales. The corrected item-total correlations for all of the items ranged from 0.14 to 0.44, with six items not meeting the cut-off level for item-total correlation (>0.3). The Chinese P-CAT demonstrated strong reliability, with a Cronbach's alpha of 0.91-0.94 for the scales and a test-retest reliability coefficient of 0.88 for the overall scale scores. The intraclass correlation was 0.92 (95% CI 0.90 to 0.95).

CONCLUSION: P-CAT appears to be a promising measure for evaluating staff perceptions of person-centredness in Chinese hospital environments. The results show that P-CAT can be a useful tool for improving the quality of healthcare in terms of person-centred care in the Chinese context.

BACKGROUND: Sweden has a policy of supporting older people to live a normal life at home for as long as possible. Therefore, it is often the oldest, most frail people who move into nursing homes. Nursing home staff are expected to meet the existential needs of the residents, yet conversations about death and dying tend to cause emotional strain. This study explores organizational readiness to implement palliative care based on evidence-based guidelines in nursing homes in Sweden. The aim was to identify barriers and facilitators to implementing evidence-based palliative care in nursing homes.

METHODS: Interviews were carried out with 20 managers from 20 nursing homes in two municipalities who had participated along with staff members in seminars aimed at conveying knowledge and skills of relevance for providing evidence-based palliative care. Two managers responsible for all elderly care in each municipality were also interviewed. The questions were informed by the theory of Organizational Readiness for Change (ORC). ORC was also used as a framework to analyze the data by means of categorizing barriers and facilitators for implementing evidence-based palliative care.

RESULTS: Analysis of the data yielded ten factors (i.e., sub-categories) acting as facilitators and/or barriers. Four factors constituted barriers: the staff's beliefs in their capabilities to face dying residents, their attitudes to changes at work as well as the resources and time required. Five factors functioned as either facilitators or barriers because there was considerable variation with regard to the staff's competence and confidence, motivation, and attitudes to work in general, as well as the managers' plans and decisional latitude concerning efforts to develop evidence-based palliative care. Leadership was a facilitator to implementing evidence-based palliative care.

CONCLUSIONS: There is a limited organizational readiness to develop evidence-based palliative care as a result of variation in the nursing home staff's change efficacy and change commitment as well as restrictions in many contextual conditions. There are considerable individual- and organizational-level challenges to achieving evidence-based palliative care in this setting. The educational intervention represents one of many steps towards developing a culture conducive to evidence-based nursing home palliative care.

Quality within all areas of healthcare should be systemically monitored and ensured. However, the definition of quality is complex and diverse. In the ambulance service (AS), quality has traditionally been defined as response time, but this measurement eliminates the possibility of addressing other characteristics of quality, such as the care provided. This study aimed to explore what constitutes quality in the context of the ambulance service as experienced by ambulance clinicians, physicians, and managers. A focus group study was conducted with 18 participants. The three focus groups were analyzed with the focus group method developed by Kreuger and Casey. The participants highlighted patient involvement, information and care, as well as adherence to policies, regulations, and their own standards as representing quality in the AS. This study demonstrates that quality is in the eye of the beholder. As quality seems to be viewed similarly by patients and ambulance clinicians, physicians, and managers, stakeholders should aim for a paradigm shift where patients' experience of the care is just as important as various time measures.

BACKGROUND: The length of stay in nursing homes before death in Sweden has significantly decreased, and nearly one-third of people die within 6 weeks of entering a nursing home. Support for the next of kin is one of the cornerstones of palliative care, but the principles are not always adhered to as recommended when caring for the elderly, which can affect the quality of life of their next of kin. The aim of this study was to explore the experiences of quality of life among the next of kin of older persons who live in nursing homes before an educational intervention of palliative care.

METHODS: This is an explorative qualitative interview study with 40 next of kin using qualitative content analysis performed at baseline before the implementation of the principles of palliative care in nursing homes.

RESULTS: The next of kin's experiences of quality of life were expressed in three themes: Orientation to the new life situation, Challenges in their relationship and the Significance of the quality of care in the nursing home. The next of kin experienced a sense of relief, although the older person was constantly on their minds, and they could feel lonely. The difference in the couple'slife situations was experienced as burdensome by the next of kin. The challenges in the relationship were described as stressful, related to a guilty conscience and the older person's vulnerability. The nursing home could be a context facilitating good relations. The perceptions of quality of care in terms of person-centredness affected the quality of life of the next of kin.

CONCLUSIONS: The findings show that four factors are decisive for the quality of life of next of kin: the relationships within the family, the degree of relief that nursing home care entails as compared to home care, the older person's health status and whether the care is person-centred. Increased knowledge and education regarding palliative care in nursing homes are needed to better meet the needs of next of kin. Implementation of palliative care should take into account the need for support for next of kin.

AIM: The aim was to explore the ambulance service as experienced by present and former employees.

BACKGROUND: Over the last decade, the number of ambulance assignments has increased annually by about 10%, and as many as 50% of all ambulance assignments are considered non-urgent. This raises questions about which assignments the Ambulance Service (AS) is supposed to deal with.

DESIGN/METHOD: Data were collected from three focus group interviews with a total of 18 present and former employees of the Swedish AS. An inductive qualitative analysis method developed by Krueger was chosen.

RESULTS: Five themes emerged in the analysis: "Poor guidance for practice", "An unclear assignment", "Being a gate keeper", "From saving lives to self-care" and "Working in no man's land", which together constitute the AS.

CONCLUSION: Present and former employees of the AS in Sweden describe their mission as unclear and recognize the lack of consensus and a clearly developed mission statement. Furthermore, expectations and training mainly focus on emergency response, which is contrary to the reality of the ambulance clinicians' everyday work.

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

BACKGROUND: Next of kin participation in care is a cornerstone of palliative care and is thus important in nursing homes, and outcomes following interventions need to be evaluated using robust methods.

OBJECTIVE: To use within-group and within-individual analytical approaches to evaluate the participation of next of kin in care following an intervention and to compare the outcome between the intervention and control groups.

METHODS: A pre-post intervention/control group study design was used. The educational intervention, directed towards staff members, focused on palliative care. The Next of Kin Participation in Care scale comprises the Communication and Trust subscale and the Collaboration in Care subscale, with nine items each. In total, 203 persons (intervention group: n = 95; control group: n = 108) were included. Three different analytical approaches were used: 1) traditional within-group comparison of raw ordinal scores and linearly transformed interval scores; 2) modern within-individual (person-level) interval score comparisons; 3) comparisons between the intervention group and control group based on individual person-level outcomes.

RESULTS: Within-group comparisons of change revealed no change in any of the groups, whether based on raw or transformed scores. Despite this, significant improvements at the individual level were found in 32.9% of the intervention group and 11.6% of the control group for the total scale (p = 0.0024), in 25% of the intervention group and 10.5% of the control group for the Communication and Trust subscale (p = 0.0018), and in 31.2% of the intervention group and 10.5% of the control group for the Collaboration in Care subscale (p = 0.0016). However, a significant worsening at the individual level in Collaboration in Care was found in 35.1% of the intervention group but only among 8.4% of the control group (p < 0.0005).

CONCLUSION: The intervention seems to have a positive impact on next of kin participation in care in nursing homes, especially for communication and trust. However, some next of kin reported decreased participation in care after the intervention. Modern individual person-level approaches for the analysis of intervention outcomes revealed individual significant changes beyond traditional group-level comparisons that would otherwise be hidden. The findings are relevant for future outcome studies and may also necessitate a re-evaluation of previous studies that have not used individual person-level comparisons.

TRIAL REGISTRATION: This study is part of the intervention project registered under Clinical Trials Registration NCT02708498.

BACKGROUND: Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes.

OBJECTIVE: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes.

METHODS: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis.

RESULTS: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances).

CONCLUSION: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.

TRIAL REGISTRATION: The KUPA project has Clinical Trials number NCT02708498.

BACKGROUND: Nursing home residents in Sweden are old, frail and usually have multiple morbidities which often make dying a prolonged suffering. It has been found that older persons at nursing homes receive far less palliative care than younger persons, partly because it is difficult to identify when the final stage of life begins. The identification may help the staff to enable the older person and their families to participate in planning the care in accordance with their own preferences and values. With this in mind the aim was to explore the experiences of early and late signs preceding dying in older persons in nursing homes from the multidisciplinary team's perspective.

METHODS: The focus group method was used to interview 20 health-care professionals on the basis of semi-structured questions. Four focus groups were conducted at four nursing homes in two counties in southern Sweden. The groups included different professionals such as assistant nurses, registered nurses, occupational therapists, physiotherapists, social workers and unit managers. The analysis was conducted according to the focus group method developed by Kruger and Casey.

RESULTS: The analysis revealed one major theme, from unawareness to obviousness, which illustrates that the participants experienced dying as a happening, not a process, and found it difficult to identify early signs. Even though it was a new way of thinking, several suggestions of early signs were presented. The main category "Going into a bubble" illustrates early signs, which meant that the older person showed signs of wanting to withdraw from the outside world. The main category "The body begins to shut down" illustrates late signs, which meant that the older person showed signs that indicate that the body starts to prepare for death.

CONCLUSIONS: This study conveys new knowledge concerning the multidisciplinary team's collective experience of early and late signs that precede dying. This knowledge can increase the understanding of when a palliative care approach needs to be in place at nursing homes. The use of a palliative care approach in care planning requires consensus in the perception of the dying process of frail older persons.