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.
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's life 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.
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.
BACKGROUND: Despite increased attention and knowledge in palliative care, there is still confusion concerning how to interpret the concept of palliative care and implement it in practice. This can result in difficulties for healthcare professionals in identifying patients whom would benefit from palliative care, which, in turn, could lead to a delay in meeting patients' needs.
AIM: To explore healthcare professionals' perceptions of palliative care.
METHOD: Data were collected through twelve interprofessional focus group interviews in community care and hospital wards in south Sweden (n = 74). All interviews were analysed with latent content analysis.
RESULTS: Three domains were revealed: first, a blurred conceptual understanding as participants described palliative care using synonyms, diagnoses, phases, natural care and holism; second, a challenge to communicate transitions concerned the importance of how and when the transition to palliative care was communicated and documented; finally, a need for interprofessional collaboration was described as well as the consequences for severely ill persons, relatives and healthcare professionals when it was not established.
CONCLUSION: The perceptions about how to interpret palliative care differed as well as when palliative care should be offered and decided, which might have practical consequences. How long a person has left to live is of great significance for decision-making, caregiving and preparation in palliative care. The challenge is to use interprofessional communication to promote understanding and collaborate across varied care levels. Integrating palliative care across diverse care levels could be one way to reduce the ambiguity of palliative care.
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.
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 .
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.