Participant Observation in Nursing Home Wards for People Suffering from Dementia: The Problems of Trust and Emotional Involvement

This contribution describes the problems and pitfalls associated with the use of (participant) observation in nursing home wards for people suffering from dementia. The research concentrated on how different nursing homes develop their care for inhabitants suffering from dementia. In order to study this, I was a known observer in four wards, each time for several months. "Getting in" to the wards did not prove to be very problematic, but "getting along" was a lot harder. There was no reason for staff to trust a snooping sociologist until I was able to convince them I was not a spy for management. It was quite clear that the information I received was influenced by the way I was perceived. Moreover, the dementia the inhabitants of the wards suffer from and their reaction to it did not leave me indifferent. This also could influence the data gathering process. URN: urn:nbn:de:0114-fqs000125

The health and well-being of older adults with dual sensory impairment (DSI) in four countries

Objectives Dual sensory impairment (DSI) is a combination of vision and hearing impairments that represents a unique disability affecting all aspects of a person’s life. The rates of DSI are expected to increase due to population aging, yet little is known about DSI among older adults (65+). The prevalence of DSI and client characteristics were examined among two groups, namely, older adults receiving home care services or those residing in a long-term care (LTC) facility in four countries (Canada, US, Finland, Belgium). Methods Existing data, using an interRAI assessment, were analyzed to compare older adults with DSI to all others across demographic characteristics, functional and psychosocial outcomes. Results In home care, the prevalence of DSI across the four countries ranged from 13.4% to 24.6%; in LTC facilities, it ranged from 9.7% to 33.9%. Clients with DSI were more likely to be 85+, have moderate/severe cognitive impairment, impairments in activities of daily living, and have communication difficulties. Among residents of LTC facilities, individuals with DSI were more likely to be 85+ and more likely have a diagnosis of Alzheimer’s disease. Having DSI increased the likelihood of depression in both care settings, but after adjusting for other factors, it remained significant only in the home care sample. Conclusions While the prevalence of DSI cross nationally is similar to that of other illnesses such as diabetes, depression, and Alzheimer’s disease, we have a limited understanding of its affects among older adults. Raising awareness of this unique disability is imperative to insure that individuals receive the necessary rehabilitation and supportive services to improve their level of independence and quality of life

Integrated palliative care for nursing home residents : exploring the challenges in the collaboration between nursing homes, home care and hospitals

Introduction: Nursing home residents are a vulnerable and frail segment of the population, characterised by their complex and palliative care needs. To ensure an integrated approach to palliative care for this target group, working on a collaborative basis with multiple providers across organisational boundaries is necessary. Considering that coordinators of palliative networks support and coordinate collaboration, the research question is: 'how do network coordinators perceive the process of collaboration between organisations in Flemish palliative networks?' Methods: A dual-phase sequential mixed-methods design was applied. First, the coordinators of each of the fifteen palliative networks in Flanders completed a survey in which they evaluated ten aspects of collaboration for two types of cooperation: between nursing homes and home care, and between nursing homes and hospitals. Next, the survey results thus obtained were discussed to improve understanding in a focus group composed of the above coordinators, and which was analysed on the basis of content analysis. Results: In both forms of cooperation, the 'formalisation' and 'governance' were the aspects that yielded the lowest mean scores. The coordinators in the focus group expressed a need for more formalised interaction among organisations with regard to palliative care, the establishment of formal channels of communication and the exchange of information, as well as the development of shared leadership. Conclusions: The perspectives of the coordinators on inter-organisational collaboration are a valuable starting point for interventions directed at the stronger integration of palliative care for residents of long term-care facilities

Prognosis Does not Change the Landscape: Palliative Home Care Clients Experience High Rates of Pain and Nausea, Regardless of Prognosis

Background: Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (\u3c 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada\u27s largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (\u3c 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community. Methods: A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (\u3c 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference. Results: Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = - 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13). Conclusions: These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual\u27s overall quality of life throughout the duration of their illness

The interRAI Acute Care instrument incorporated in an eHealth system for standardized and web-based geriatric assessment: strengths, weaknesses, opportunities and threats in the acute hospital setting

BACKGROUND: The interRAI Acute Care instrument is a multidimensional geriatric assessment system intended to determine a hospitalized older persons’ medical, psychosocial and functional capacity and needs. Its objective is to develop an overall plan for treatment and long-term follow-up based on a common set of standardized items that can be used in various care settings. A Belgian web-based software system (BelRAI-software) was developed to enable clinicians to interpret the output and to communicate the patients’ data across wards and care organizations. The purpose of the study is to evaluate the (dis)advantages of the implementation of the interRAI Acute Care instrument as a comprehensive geriatric assessment instrument in an acute hospital context. METHODS: In a cross-sectional multicenter study on four geriatric wards in three acute hospitals, trained clinical staff (nurses, occupational therapists, social workers, and geriatricians) assessed 410 inpatients in routine clinical practice. The BelRAI-system was evaluated by focus groups, observations, and questionnaires. The Strengths, Weaknesses, Opportunities and Threats were mapped (SWOT-analysis) and validated by the participants. RESULTS: The primary strengths of the BelRAI-system were a structured overview of the patients’ condition early after admission and the promotion of multidisciplinary assessment. Our study was a first attempt to transfer standardized data between home care organizations, nursing homes and hospitals and a way to centralize medical, allied health professionals and nursing data. With the BelRAI-software, privacy of data is guaranteed. Weaknesses are the time-consuming character of the process and the overlap with other assessment instruments or (electronic) registration forms. There is room for improving the user-friendliness and the efficiency of the software, which needs hospital-specific adaptations. Opportunities are a timely and systematic problem detection and continuity of care. An actual shortage of funding of personnel to coordinate the assessment process is the most important threat. CONCLUSION: The BelRAI-software allows standardized transmural information transfer and the centralization of medical, allied health professionals and nursing data. It is strictly secured and follows strict privacy regulations, allowing hospitals to optimize (transmural) communication and interaction. However, weaknesses and threats exist and must be tackled in order to promote large scale implementation

The interRAI CHESS Scale is Comparable to the Palliative Performance Scale in Predicting 90-day Mortality in a Palliative Home Care Population

Background: Prognostic accuracy is important throughout all stages of the illness trajectory as it has implications for the timing of important conversations and decisions around care. Physicians often tend to over-estimate prognosis and may under-recognize palliative care (PC) needs. It is therefore essential that all relevant stakeholders have as much information available to them as possible when estimating prognosis. Aims: The current study examined whether the interRAI Changes in Health, End-Stage Disease, Signs and Symptoms (CHESS) Scale is a good predictor of mortality in a known PC population and to see how it compares to the Palliative Performance Scale (PPS) in predicting 90-day mortality. Methods: This retrospective cohort study used data from 2011 to 2018 on 80,261 unique individuals receiving palliative home care and assessed with both the interRAI Palliative Care instrument and the PPS. Logistic regression models were used to evaluate the relationship between the main outcome, 90-day mortality and were then replicated for a secondary outcome examining the number of nursing visits. Comparison of survival time was examined using Kaplan-Meier survival curves. Results: The CHESS Scale was an acceptable predictor of 90-day mortality (c-statistic = 0.68; p \u3c 0.0001) and was associated with the number of nursing days (c = 0.61; p \u3c 0.0001) and had comparable performance to the PPS (c = 0.69; p \u3c 0.0001). The CHESS Scale performed slightly better than the PPS in predicting 90-day mortality when combined with other interRAI PC items (c = 0.72; p \u3c 0.0001). Conclusion: The interRAI CHESS Scale is an additional decision-support tool available to clinicians that can be used alongside the PPS when estimating prognosis. This additional information can assist with the development of care plans, discussions, and referrals to specialist PC teams

Potential Quality Indicators for Seriously Ill Home Care Clients: A Cross-Sectional Analysis Using Resident Assessment Instrument for Home Care (RAI-HC) Data for Ontario

Background Currently, there are no formalized measures for the quality of home based palliative care in Ontario. This study developed a set of potential quality indicators for seriously ill home care clients using a standardized assessment. Methods Secondary analysis of Resident Assessment Instrument for Home Care data for Ontario completed between 2006 and 2013 was used to develop quality indicators (QIs) thought to be relevant to the needs of older (65+) seriously ill clients. QIs were developed through a review of the literature and consultation with subject matter experts in palliative care. Serious illness was defined as a prognosis of less than 6 months to live or the presence of severe health instability. The rates of the QIs were stratified across Ontario’s geographic regions, and across four common life-limiting illnesses to observe variation. Results Within the sample, 14,312 clients were considered to be seriously ill and were more likely to experience negative health outcomes such as cognitive performance (OR = 2.77; 95% CI: 2.66–2.89) and pain (OR = 1.59; 95% CI: 1.53–1.64). Twenty subject matter experts were consulted and a list of seven QIs was developed. Indicators with the highest overall rates were prevalence of falls (50%) prevalence of daily pain (47%), and prevalence of caregiver distress (42%). The range in QI rates was largest across regions for prevalence of caregiver distress (21.5%), the prevalence of falls (16.6%), and the prevalence of social isolation (13.7%). Those with some form of dementia were most likely to have a caregiver that was distressed (52.6%) or to experience a fall (53.3%). Conclusion Home care clients in Ontario who are seriously ill are experiencing high rates of negative health outcomes, many of which are amenable to change. The RAI-HC can be a useful tool in identifying these clients in order to better understand their needs and abilities. These results contribute significantly to the process of creating and validating a standardized set of QIs that can be generated by organizations using the RAI-HC as part of normal clinical practice

Adverse Life Events: Do Home Care Clients Have Resources for Mastering Them?

Objectives: Research on life stressors and adverse life events has a long tradition. Few studies have addressed this topic in connection to very old people. Life stressors, especially major life stressors (MLSs) experienced by clients of home care services in the community have rarely been the subject of studies. Considering this gap, we investigated the prevalence of MLSs in home care clients. We examined the effects that MLSs have on their mood and health status as well as the impact of clients’ social resources on MLSs and their outcomes. Method: We used assessment data from 2,884 home care clients in six European countries. The methodological basis was the comprehensive and standardized interRAI Home Care Assessment (interRAI HC). Results: Fifteen point four percent of the sample—that consisted of women and men with an average age of 82.89 years–experienced an MLS in the last 6 months before the assessment. They were more depressed than persons without these experiences, and their health status indicated a higher level of instability and deterioration. At reassessment after 6 months, the situation changed. Despite the fact that both outcomes of the MLSs, depression and health status became worse in the reassessment-sample, home care clients without MLS were more affected by the worsening, especially that of depression. The expected buffering impact of social resources was low. Discussion: Although this study worked with limited information on MLSs, it could contribute to closing various knowledge gaps. The study shows that the MLSs represent a prevalent problem in a population of home care clients and that this problem has negative consequences for their mood and the stability of their health status. Furthermore, this research took up the situation of very old and vulnerable adults, who have previously rarely been considered in studies on major critical life events and stressors. Conclusion and Research Perspective: Future research on MLSs has to take up the issue of the time passage between the MLS and the impact on health and well-being of individuals dependent on care. It has to determine immediate as well as later consequences and identify those factors that are appropriate to reduce the MLS-effects on very old people dependent on care

Assessment of oral health in older adults by non-dental professional caregivers : development and validation of a photograph-supported oral health–related section for the interRAI suite of instruments

Objectives An optimized oral health-related section and a video training were developed and validated for the interRAI suite of instruments. The latter is completed by professional non-dental caregivers and used in more than 40 countries to assess care needs of older adults. Methods The optimized oral health-related section (ohr-interRAI) consists of nine items and a video training that were developed in consecutive phases. To evaluate psychometric properties, a study was conducted in 260 long-term care residents. Each resident was assessed by a dentist and by four caregivers (two who received the video training, two who did not). Results Mean kappa values and percent agreement between caregivers and dentist ranged between kappa = 0.60 (80.2%) for dry mouth and kappa = 0.13 (54.0%) for oral hygiene. The highest inter-caregiver agreement was found for dry mouth with kappa = 0.63 [95% CI: 0.56-0.70] (81.6%), while for the item palate/lips/cheeks only kappa = 0.27 [95% CI: 0.18-0.36] (76.7%) was achieved. Intra-caregiver agreement ranged between kappa = 0.93 [95% CI: 0.79-1.00] (96.4%) for dry mouth and kappa = 0.45 [95% CI: 0.06-0.84] (82.8%) for gums. Logistic regression analysis showed only small differences between caregivers who watched the video training and those who did not. Conclusions Psychometric properties of the optimized ohr-interRAI section were improved compared to previous versions. Nevertheless, particularly the items based on inspection of the mouth require further refinement and caregiver training needs to be improved