Integrated Palliative Care Outcome Scale for People with Dementia : easy language adaption and translation

Background: In this article, we report the cultural adaption and translation of the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) into a Swiss-German easy language version for proxy assessment of people with dementia living in Swiss nursing homes. The Swiss-German easy language version of the IPOS-Dem was developed and culturally adapted in a six-phase process from the German IPOS-Dem using recommended guidelines.With nursing home staff and laypeople, the conceptual definition and relevance of IPOS-Dem items were established during phase I. Phase II encompassed the completion of forward translations. Independent native speakers blind to the original scale translated and back-translated the Swiss-German easy language version. The resulting IPOS-Dem version was then blindly back-translated in phase III. Experts reviewed all resulting translations in phase IV to produce a pre-final IPOS-Dem version. Finally, the phase V cognitive debriefing involved two focus groups assessing the pre-final IPOS-Dem version. Phase V included cognitive interviews with laypeople (n = 2), family members of those with dementia (n = 4) and staff from different care contexts (n = 12). Results: Using easy language specialists yielded a clinically relevant, comprehensive and understandable translation. In addition, face and content validity for the easy language version were established in the cognitive interviews. Conclusions: With an easy language IPOS-Dem, all frontline staff and family members can be empowered to communicate their observations after caring interactions. Enhanced clinical communication with easy language tools shows the potential for research and clinical applications. In addition, attentive use in scales of easy language communication may foster increased engagement with untrained laypeople in clinical and care research

Pain Interventions for people with dementia: a quasi-experimental study

Abstract Background Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia. Methods Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data. Results We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time. Conclusion This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs. Trial registration The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726)

Inter-rating reliability of the Swiss easy-read integrated palliative care outcome scale for people with dementia

The Integrated Palliative Care Outcome Scale for People with Dementia is a promising instrument for nursing home quality improvement and research in dementia care. It enables frontline staff in nursing homes to understand and rate the needs and concerns of people with dementia. We recently adapted the measure to include easy language for users from various educational backgrounds. This study examines the inter-rating reliability of the Integrated Palliative Care Outcome Scale for People with Dementia for frontline staff in nursing homes. 317 frontline staff members in 23 Swiss nursing homes assessed 240 people with dementia from a convenience sample. Reliability for individual items was computed using Fleiss Kappa. The individual Integrated Palliative Care Outcome Scale for People with Dementia items showed kappa values between .38 (95% CI .3–.48) and .15 (95% CI .08–.22). For the experimental IPOS-Dem sum score, a dependability index of .57 was found. The different ratings and time between ratings explain less than 2% of the variance in the sum score. The different nursing homes make up 12% and the people with dementia make up 43% of the sum score variance. The dependability study indicates that an experimental IPOS-Dem sum score could be acceptable for research by averaging two ratings

Prevention admission into nursing homes (PAN) ::study protocol for an explorative, prospective longitudinal pilot study

BACKGROUND: In Switzerland, there is a lack of adequate rehabilitation services, and effective coordination, that take into account the multifactorial health risks of older people. The literature shows that the hospitalisation rate in rehabilitation facilities has increased in recent years and that a gender bias exists. Additionally, there is little or no evidence available on the effect that a post-acute care programme might have over an extended period on functioning, quality of life and the informal network of older people. Therefore, the aim of this trial is to evaluate the sustainability of post-acute care within three nursing homes in Zurich, Canton of Zurich, Switzerland. METHODS: The Prevention Admission into Nursing homes (PAN) study is a explorative, prospective, longitudinal pilot trial based on a convenience sample of three long-term care facilities in the Swiss Canton of Zurich. The proposed pilot study will examine the effects of a post-acute care programme on people aged ≥65 years with a post-acute care potential ≥ three admitted to any of the three post-acute care units (n = 260). Older people of all sexes admitted to one of the post-acute care units and likely to be discharged to home within 8 weeks will be eligible for participation in the study. The primary endpoint is functionality based on the Barthel Index. The secondary endpoints are independency based on delirium, cognition, mobility, falling concerns, frailty, weight/height/body mass index, post-acute care capability, quality of life, and lastly, the informal network. As part of process evaluation, a qualitative evaluation will be conducted based on constructive grounded theory to specifically analyse how the experience of informal caregivers (n = 30) can contribute to a successful daily life 6 months after discharge. DISCUSSION: We expect to observe improved functional status and independence after the post-acute care programme. The qualitative evaluation conducted with caregivers will complement our description of the transition of older people towards living at home. TRIAL REGISTRATION: This study is registered in the German Clinical Trials Register under DRKS00016647 (registered on 23.05.2019)