Development and quality assessment of the psychometric properties of the Self-Efficacy in Lifestyle Counselling scale (SELC 20 + 20) using Rasch analysis.

BACKGROUND: Globally as well as in Sweden, diseases that are caused by unhealthy lifestyle habits are the most common causes of death and disability. Even though there are guidelines that oblige all health-care professionals to counsel patients about lifestyle, studies have shown that it is not prioritized within healthcare. One reason for this among nurses has been shown to be lack of confidence in knowledge and counselling skills. This study aimed to develop, and quality assess the psychometric properties of an instrument to measure self-efficacy in lifestyle counselling. METHODS: An instrument inspired by an American instrument, following Bandura's recommendations for development of self-efficacy measures, was developed according to Swedish national guidelines for disease-prevention. The instrument was revised after cognitive interviews with nursing students, university teachers within health sciences, and clinical experts, then administrated to 310 nursing students at different levels in their education. The instrument was tested with Rasch Measurement Theory, with focus on dimensionality, local dependency, targeting, reliability, response category functioning, Rasch model fit, and differential item functioning by age, gender, educational level and previous health care education. RESULTS: The development of the instrument resulted in 20 + 20 items, 20 items about self-efficacy in knowledge, and 20 items about self-efficacy in ability to counsel persons about their lifestyle. The analyses showed that knowledge and ability are two different, but related, constructs, where ability is more demanding than knowledge. The findings provide support (considering dimensionality and local dependency) for that all 20 items within the knowledge construct as well as the 20 items within the ability construct can be summed, achieving two separate but related total scores, where knowledge (reliability 0.81) is a prerequisite for ability (reliability 0.84). Items represented lower self-efficacy than reported by the respondents. Response categories functioned as expected, Rasch model fit was acceptable, and there was no differential item functioning. CONCLUSIONS: The SELC 20 + 20 was found to be easy to understand with an acceptable respondent burden and the instrument showed good measurement properties.

Public health nurses experience of mental health encounters in the context of primary health care: a constructivist grounded theory study.

BACKGROUND: In primary health care people with mental health needs are often overlooked or masked with physical complaints. It has been suggested that public health nurses lack sufficient knowledge when encountering people with mental health problems. Low levels of mental health literacy among professionals are associated with negative patient outcome. There is a need to understand public health nurses process and strategies used when encountering a person with mental health problems in order to promote mental health. This study aimed to construct a theory that explains the process of public health nurses experience when encountering people with mental health problems based on their knowledge, attitudes, and beliefs about mental health. METHODS: A constructivist grounded theory design was used to meet the aim of the study. Interviews were conducted with 13 public health nurses working in primary health care between October 2019 and June 2021, and the data analysis was performed according to the principles of Charmaz. RESULTS: The core category, "Public health nurses as a relationship builder - to initiate the dialogue" reflected the process while the main categories "Being on your own", "Being on top of things- knowing your limits", and "Professional comfort zone" reflected conditions that were decisive for initiating a dialogue. CONCLUSION: Managing mental health encounters in primary health care was a personal and complex decision-making process that depends on the public health nurses' professional comfort zone and acquired mental health literacy. Narratives of the public health nurses helped to construct a theory and understand the conditions for recognizing, managing and promoting mental health in primary health care.

"You have to live with some risk, it's part of the profession". Specialist ambulance nurses' perceptions of assignments involving ongoing lethal violence.

BACKGROUND: As a result of several violent terrorist incidents, authorities in Sweden have shifted from previous approaches of being certain that it is safe for the ambulance service to enter the scene, to a one where "safe enough" is sufficient, potentially making it possible to save more lives. The aim was therefore to describe specialist ambulance nurses' perceptions of the new approach to assignments involving incidents with ongoing lethal violence. METHODS: This interview study employed a descriptive qualitative design with a phenomenographic approach in accordance with Dahlgren and Fallsberg. RESULTS: Five categories containing conceptual descriptions were developed from the analysis: Collaboration, Unsafe environments, Resources, Unequipped and Risk taking and self-protection. CONCLUSIONS: The findings highlight the need to ensure that the ambulance service is a learning organisation, where clinicians with experience of an ongoing lethal violence event can pass on and share their knowledge with colleagues to prepare mentally for such an event. Potentially compromised security in the ambulance service when dispatched to ongoing lethal violence incidents needs to be addressed.

Palliative care delivery at nursing homes before and after an educational intervention from professionals' perspective: A pre-post design.

BACKGROUND: The principles of palliative care were developed in hospices and specialised palliative care units and have not been sufficiently adapted to and evaluated in nursing homes. Therefore, an educational intervention from an interprofessional education perspective was performed within the project Implementation of Knowledge-Based Palliative Care in Nursing Homes. The aim of this study was to evaluate professionals' experience of palliative care delivery before and after the educational intervention. METHODS: The educational intervention for nursing home professionals consisted of five 2-h seminars over 6 months at 20 nursing homes. The intervention and control groups consisted of 129 and 160 professionals from 30 nursing homes respectively. The questionnaire 'Your experience of palliative care' was completed 1 month before (baseline) and after (follow-up) the intervention. Descriptive and inferential statistics were calculated. RESULTS: The positive effects at follow-up concerned the use of a valid scale for grading symptoms, attendance to the needs of next of kin (including bereavement support), documentation of older persons' wishes regarding place to die and conversations about their transition to palliative care and about how they were treated. CONCLUSIONS: This study demonstrates a promising interprofessional educational model. However, the paucity of improvements brought to light at follow-up indicates a need for research directed towards a revision of this model. Supervision of professionals during palliative care delivery is one suggestion for change.

Next of kin participation in the care of older persons in nursing homes: A pre-post non-randomised educational evaluation, using within-group and individual person-level comparisons.

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.

Psychometric evaluation of the Chinese version of the Person-Centred Care Assessment Tool.

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.

Measuring next of kin's experience of participation in the care of older people in nursing homes.

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.

Evaluating person-centredness for frail older persons in nursing homes before and after implementing a palliative care intervention.

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.

Being the next of kin of an older person living in a nursing home: an interview study about quality of life.

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. TRIAL REGISTRATION: NCT02708498, 15 March 2016.

Next of kin's quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes.

PURPOSE: The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life for next of kin to older persons in nursing homes. METHODS: Altogether, 90 next of kin in the intervention group and 105 next of kin in the control group were included. Data were collected using the WHOQOL-BREF questionnaire, answered before and 3 months after the intervention was completed. Descriptive and comparative analyses were performed. RESULTS: This study found a statistically significant increase in the Physical health subscale in the intervention group but not in the control group. In contrast, the General health score decreased in the control group but not in the implementation group. Furthermore, we found an increase in the item able to perform activities of daily living in the intervention group and a decrease in the item energy and fatigue in the control group. CONCLUSION: The results indicated small statistical changes regarding next of kins' QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for. TRIAL REGISTRY: Trial registration NCT02708498. Date of registration 26 February 2016.

Quality of life of older persons in nursing homes after the implementation of a knowledge-based palliative care intervention.

BACKGROUND: The goals of palliative care are to relieve suffering and promote quality of life. Palliative care for older persons has been less prioritised than palliative care for younger people with cancer, which may lead to unnecessary suffering and decreased quality of life at the final stage of life. AIM: To evaluate whether a palliative care intervention had any influence on the perceived quality of life of older persons (≥65 years). METHODS: This study was conducted as a complex intervention performed with an experimental crossover design. The intervention was implemented in 20 nursing homes, with a six-month intervention period in each nursing home. Twenty-three older persons (≥65 years) in the intervention group and 29 in the control group were interviewed using the WHOQOL-BREF and WHOQOL-OLD questionnaires at both baseline and follow-up. The collected data were analysed using the Wilcoxon signed-rank test to compare paired data between baseline and follow-up. RESULTS: In the intervention group, no statistically significant increases in quality of life were found. This result contrasted with the control group, which revealed statistically significant declines in quality of life at both the dimension and item levels. Accordingly, this study showed a trend of decreased health after nine months in both the intervention and control groups. CONCLUSION: It is reasonable to believe that quality of life decreases with age as part of the natural course of the ageing process. However, it seems that the palliative care approach of the intervention prevented unnecessary quality of life decline by supporting sensory abilities, autonomy and social participation among older persons in nursing homes. From the ageing perspective, it may not be realistic to strive for an increased quality of life in older people living in nursing homes; maybe the goal should be to delay or prevent reduced quality of life. Based on this perspective, the intervention prevented decline in quality of life in nursing home residents. IMPLICATIONS FOR PRACTICE: The high number of deaths shows the importance to identify palliative care needs in older persons at an early stage to prevent or delay deterioration of quality of life.

Evaluation of person-centeredness in nursing homes after a palliative care intervention: pre- and post-test experimental design.

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.

Quality Is in the Eye of the Beholder-A Focus Group Study from the Perspective of Ambulance Clinicians, Physicians, and Managers.

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.

Next of kin's perceptions of the meaning of participation in the care of older persons in nursing homes: a phenomenographic study.

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.

Mental health and reactions to caregiving among next of kin of older people (65+) with multi-morbidity discharged home after hospitalization.

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.

Early and late signs that precede dying among older persons in nursing homes: the multidisciplinary team's perspective.

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.

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.

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.

Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden.

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.

Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol.

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 .

Towards evidence-based palliative care in nursing homes in Sweden: a qualitative study informed by the organizational readiness to change theory.

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.