| dc.description.abstract | Abstract Background Nursing home patients represent a heterogeneous, complex, and clinically challenging population. A crucial concern is that most of the patients lack the capacity to provide informed consent, as approximately 80% have dementia along with multimorbidity and polypharmacy. Once admitted, most patients die in the nursing home, which puts significant demands on the staff to provide adequate end-of-life care. Ideally, the end-of-life process in the nursing home, be it acute or chronic, should be characterised by trust and understanding shared by the patient, family, and staff and by high awareness of the patient’s values and wishes. However, for many patients and family members difficult question arise. We know that it is essential to involve patients in medical decision-making, but this is increasingly difficult when the patient does not understand the situation or is not able to form an opinion and communicate it. In these instances, family members are often asked to become guardians. Making decisions on a person’s behalf is demanding, and the family might not know what their loved ones would have thought about treatment and end-of-life care. The staff might also experience this uncertainty as distressing because they do not know what the patient and family need. This uncertainty increases the risk of unwanted treatments and disagreements within the family and between family and staff. This necessitates a systematic approach that is developed, implemented, and tested in the nursing home setting. Advance Care Planning (ACP) aims to address the patients’ preferences, values, and potential concerns about treatment and care. Providing ACP represents an important tool that can help the patient, family, and staff to achieve a common understanding of “what matters” and to be better prepared for the end-of-life process and medical emergencies by creating a common understanding and trust. ACP can help the staff understand the patients’ values, wishes, and needs and make them more confident in their patient care. In turn, this might also affect the staff in terms of reduced distress. The complexity of the situation becomes even more evident by the fact that most nursing home patients with dementia have neuropsychiatric symptoms such as agitation and depression, which are distressing for both the patients and the staff. The lack of competence and knowledge to deal with difficult symptoms can also be distressing for the staff, leading to increased risk of burnout, sick leave, and turnover. Increasing the staff’s knowledge and competence along with providing effective interventions that improve challenging symptoms are central for the patients’ wellbeing and might also reduce staff distress. Aims The overarching aim of this thesis was twofold. First it sought to develop, implement, and test the effects of ACP, and second it sought to address the staff perspective in the nursing home setting. Specifically, it was a key to explore how staff received the ACP intervention and implementation and if staff distress was affected by improved patient treatment and routines in the nursing home. Methods Two studies provided the data for this thesis. In paper 1, we used data from a cluster randomised controlled trial (cRCT) called “The Impact of Pain on Behavioural Disturbances in Patients with Moderate and Severe Dementia” (PAIN-BPSD). Papers 2 and 3 used data from the cRCT called the COSMOS trial (COmmunication in the form of ACP, Systematic pain assessment and management, Medication review, Organisation of activities, and Safety). All of the included patients were 65 years or older and received long-term care in Norway. Paper 1: Staff distress was investigated by secondary analyses from the PAIN-BPSD study, which was originally designed to test the effects of pain treatment on neuropsychiatric symptoms in nursing home patients with dementia. Nursing home units were allocated to the intervention group (33 units; n = 175) or control group (27 units; n = 177). Patients in the intervention group received a stepwise protocol for treating pain for eight weeks, followed by a four-week washout period. The control group received care as usual. Staff informants (n = 138) reported neuropsychiatric symptoms in patients and their own distress in relation to these using the Neuropsychiatric Inventory–Nursing Home version (NPI-NH). Additional outcomes were pain as measured by the Mobilisation-Observation-Behaviour-Intensity-Dementia-2 Pain Scale (MOBID-2) and cognitive functioning as measured by the Mini Mental Status Examination (MMSE). Paper 2: The development and implementation of the ACP component in the COSMOS trial was investigated, and facilitators and barriers were identified. The COSMOS trial lasted for four months with a nine-month follow-up. Paper 2 used data from the intervention group (297 patients from 36 nursing home units) focusing on the four-month intervention period. The participating staff (COSMOS ambassadors) received a standardised education programme on ACP. The implementation was ensured using a train-the-trainer approach involving the whole nursing home unit. The implementation process was assessed using individual patient logs and structured staff feedback. Facilitators and barriers were identified by qualitative analysis of the feedback from the patient logs and from a midway evaluation seminar. Paper 3: A cRCT using secondary analyses from the COSMOS trial was performed to investigate the effects of ACP on frequency of communication and satisfaction with communication as perceived by nursing home staff and families. Data included 36 intervention clusters (n = 297) and 31 control clusters (n = 248) using data from baseline, month four, and month nine. Communication was evaluated using a data collection form and questionnaires answered by the patients’ family and by the staff. Results Paper 1: We found that agitation had the largest contribution (β = 0.24) to staff distress at baseline, and we found significantly lower total staff distress in the pain treatment group compared to the control group at the eight-week assessment (B = −3.53, 95% CI = −5.47 to −1.58). Still, staff distress was also significantly reduced in the control group (B = −2.98, 95% CI = −4.38 to −1.59). The effect remained significant within both the intervention group (B = −6.24, 95% CI = −8.01 to −4.48) and the control group (B = −2.53, 95% CI = −4.34 to −0.71) throughout the four-week washout period. Paper 2: The ACP component was well received, and 105 healthcare providers participated at the education seminar. The staff reported that the educational material was relevant for their efforts to implement ACP. According to the patient logs, ACP was successfully implemented in 62% (n = 183) of the patients. Important facilitators included a clear communication to nursing home managers and staff that ACP was an essential part of adequate care and having clearly defined routines, roles, and responsibilities when implementing ACP. Lack of competence and time and conflicting cultures and staff opinions were identified as barriers. Paper 3: ACP had a positive effect on communication; meetings between the families, patients, and nurses were organised more frequently in the intervention group compared to the control group at month four (OR = 3.9, 95% CI = 1.6 to 9.4, p = 0.002). There were also more monthly contacts between families and nurses in the intervention group compared to the control group (OR = 6.5, 95% CI = 1.6 to 3.5, p = 0.010). Nursing home staff (B = 1.9, 95% CI = 0.80 to 2.91, p = 0.001) and the patients’ families (B = 0.4, 95% CI = 0.02 to 0.85, p = 0.040) were more satisfied with the communication in the intervention group compared to the control group. We also detected reduced staff distress in the intervention group compared to the control group (B = −1.8, 95% CI = −3.1 to −0.4, p = 0.012). These effects did not remain significant at the nine-month follow-up, suggesting that a closer follow-up is needed to ensure sustainability of the communication process. Conclusion This thesis describes the development, implementation, and testing of ACP in the nursing home, involving the staff perspective as a prerequisite for optimal communication between patients, families, and staff. ACP was successfully implemented leading to improved frequency of and satisfaction with the communication between the staff and family. We also found reduced staff distress, both in the PAIN-BPSD study and in the COSMOS trial. The need to involve the nursing home management and to clearly define roles and responsibilities is important so that ACP is prioritised and adopted in the nursing home setting. The focus on education and staff competence is suggested as crucial for a sustainable ACP intervention that lasts beyond the active implementation phase of a research project. | en_US |
