Measuring next of kin's experience of participation in the care of older people in nursing homes.
ABSTRACT: 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.
Project description: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.
Project description: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.
Project description:BACKGROUND:The worries of next of kin about their older loved ones in nursing homes can be extensive and can adversely affect their subjective experiences of their own physical, mental and social well-being. It is thus of utmost importance to measure the quality of life of next of kin in a valid and reliable way. METHODS:The design is a cross-sectional study with psychometric evaluation based on classical test theory in preparation for a planned educational intervention study on palliative care. An abbreviated version of the World Health Organization's quality-of-life self-assessment instrument WHOQOL, the Swedish WHOQOL-BREF, was completed by 254 next of kin of older persons in 30 nursing homes. Data quality was assessed via the mean, median, item response, missing values, and floor and ceiling effects. Reliability was estimated using Cronbach's alpha and corrected item-total correlations. Construct validity was estimated by Spearman's rank correlation, and model fit was assessed using confirmatory factor analysis. RESULTS:The rate of missing data was low (less than 2%). Ceiling effects ranged from 11 to 43% and were above 20% for 21 of 24 items. The corrected item-total correlations varied between 0.35 and 0.68 and were thus well above the lower limit of 0.30. Cronbach's alpha was 0.83, indicating satisfactory internal consistency. The confirmatory factor analysis indicated a fair to close model fit (comparative fit index 0.93, root mean squared error of approximation 0.06). CONCLUSIONS:The findings suggest that the WHOQOL-BREF may constitute a reliable and valid measure of quality of life for use among next of kin to older persons in nursing homes. When interpreting the results, it is important to assess the ceiling effect, as it may restrict the ability of the WHOQOL-BREF to detect true positive changes in quality of life over time. TRIAL REGISTRATION:NCT02708498.
Project description:BACKGROUND:52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals' views on ACP is vital. The objective of this study is to explore nurses and physicians' aims and experiences with carrying out ACP in nursing homes. METHODS:Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. RESULTS:The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. CONCLUSION:Our study add insights into how ACP is practiced in nursing homes and the professionals' agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents' needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.
Project description:<h4>Objective</h4>To describe the design of a leadership intervention for nursing home and home care, including a leadership guide for managers to use in their quality and safety improvement work. The paper reports results from the pilot test of the intervention and describes the final intervention programme.<h4>Design</h4>Qualitative design, using the participation of stakeholders.<h4>Methods</h4>The leadership guide and intervention were designed in collaboration with researchers, coresearchers and managers in nursing homes and home care organisations, through workshops and focus group interviews. The pilot test consisted of three workshops with managers working on the leadership guide, facilitated and observed by researchers, and evaluated by means of observation and focus group interviews with the participants. The analysis combined the integration of data from interviews and observations with directed content analysis.<h4>Setting</h4>Norwegian nursing homes and home care services.<h4>Participants</h4>Managers at different levels in three nursing homes and two home care services, coresearchers, and patient and next-of-kin representatives.<h4>Results</h4>The managers and coresearchers suggested some revisions to the leadership guide, such as making it shorter, and tailoring the terminology to their setting. Based on their suggestions, we modified the intervention and developed learning resources, such as videos demonstrating the practical use of the guide. Evaluation of the pilot test study showed that all managers supported the use of the guide. They adapted the guide to their organisational needs, but found it difficult to involve patients in the intervention.<h4>Conclusions</h4>A participatory approach with stakeholders is useful in designing a leadership intervention to improve quality and safety in nursing homes and home care, although patient participation in its implementation remains difficult. The participatory approach made it easier for managers to adapt the intervention to their context and to everyday quality and safety work practice.
Project description:Objectives There is growing concern regarding quality of work life (QWL) among care staff in nursing homes. However, little is known about the impact of QWL on nursing home residents’ functional performance. Recent literature suggests that job satisfaction and happiness of healthcare workers reflect their perceived QWL and impact the quality of their care. This study examined the association between job satisfaction and global happiness with change in functional performance of severely disabled elderly residents in nursing homes. Design A retrospective cohort study of nursing home residents combined with a questionnaire survey of their care staff. Setting Eighteen nursing homes in Japan. Participants Data were collected from 1000 residents with a required care level of 3–5 and from 412 care staff in nursing homes between October 2017 and March 2018. Outcomes and explanatory variables Functional performance was structurally assessed with ICF (International Classification of Functioning, Disability and Health) staging, composed of 52 items concerning activities of daily life, cognitive function and social participation, at baseline and 6?months later. Deterioration and improvement of functional performance were dichotomously defined as such change in any of the items. QWL of care staff was evaluated with a questionnaire including questions about job satisfaction and global happiness. Results Functional performance deteriorated and improved in 23.0% and 12.7% of residents, respectively. Global happiness of care staff was associated with lower probability of residents’ deterioration (adjusted OR, 0.61; CI 0.44 to 0.84). There was no significant correlation between job satisfaction or happiness of care staff and improvement of residents’ functional performance. Conclusion These results suggest that QWL of care staff is associated with changes in functional performance of elderly people with severe disabilities in nursing homes.
Project description:Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies.This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group.This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.
Project description:<label>BACKGROUND</label>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.<label>METHODS/DESIGN</label>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.<label>DISCUSSION</label>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.<label>TRIAL REGISTRATION</label>NCT02708498 .
Project description: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.
Project description:BACKGROUND:Person-centred care is the bedrock of modern dementia services, yet the evidence-base to support its implementation is not firmly established. Research is hindered by a need for more robust measurement instruments. The 14-item Person-Centred Climate Questionnaire - Staff version (PCQ-S) is one of the most established scales and has promising measurement properties. However, its construction under classical test theory methods leaves question marks over its rigour and the need for evaluation under more modern testing procedures. METHODS:The PCQ-S was self-completed by nurses and other care staff working across nursing homes in 35 Swedish municipalities in 2013/14. A Rasch analysis was undertaken in RUMM2030 using a partial credit model suited to the Likert-type items. Three subscales of the PCQ-S were evaluated against common thresholds for overall fit to the Rasch model; ordering of category thresholds; unidimensionality; local dependency; targeting; and Differential Item Functioning. Three subscales were evaluated separately as unidimensional models and then combined as subtests into a single measure. Due to large number of respondents (n?=?4381), two random sub-samples were drawn, with a satisfactory model established in the first ('evaluation') and confirmed in the second ('validation'). Final item locations and a table converting raw scores to Rasch-transformed values were created using the full sample. RESULTS:All three subscales had disordered thresholds for some items, which were resolved by collapsing categories. The three subscales fit the assumptions of the Rasch model after the removal of two items, except for subscale 3, where there was evidence of local dependence between two items. By forming subtests, the 3 subscales were combined into a single Rasch model which had satisfactory fit statistics. The Rasch form of the instrument (PCQ-S-R) had an adequate but modest Person Separation Index (<?0.80) and some evidence of mistargeting due to a low number of 'difficult-to-endorse' items. CONCLUSIONS:The PCQ-S-R has 12 items and can be used as a unidimensional scale with interval level properties, using the nomogram presented within this paper. The scale is reliable but has some inefficiencies due to too few high-end thresholds inhibiting discrimination amongst populations who already perceive that person-centred care is very good in their environment.