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Australian Occupational Therapy Journal Jun 2024The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in...
INTRODUCTION
The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.
METHODS
This study took place in a not-for-profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one-on-one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.
CONSUMER AND COMMUNITY INVOLVEMENT
This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.
RESULTS
Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.
CONCLUSION
Adapting a community-based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.
PLAIN LANGUAGE SUMMARY
Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence-based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual.
PubMed: 38937870
DOI: 10.1111/1440-1630.12978 -
BMC Psychiatry Jun 2024Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal... (Meta-Analysis)
Meta-Analysis
A qualitative meta-synthesis of service users' and carers' experiences of assessment and involuntary hospital admissions under mental health legislations: a five-year update.
BACKGROUND
Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal and service reforms in various countries are intended to reduce rates of detention and improve service user experience. We aimed to inform policy and service delivery by providing an up-to-date synthesis of qualitative evidence on service users' and carers' experiences of assessment and detention under mental health legislation, updating previous reviews in which we searched for literature published up to 2018.
METHODS
We searched five bibliographic databases for studies published between January 2018 and March 2023. We identified 24 additional studies reporting qualitative investigations of service users' or carers' experiences of assessment or detention under mental health legislation. A team including researchers with relevant personal experience analysed and synthesised data using a thematic synthesis approach.
RESULTS
Findings suggest that views on compulsory admissions and assessment varied: many reports highlighted its often negative, traumatic impacts on emotional well-being and self-worth, with fewer accounts of it as an opportunity to access help and support, accompanied by feelings of relief. Experiences of racial discrimination, inequality of access, and dissatisfaction with support before and after hospital stay were more prominent than in our previous reviews.
CONCLUSIONS
Increasing service user and carer involvement in treatment decisions, provision of timely information at key stages of the admission process, training of key personnel, addressing the issue of discrimination, and investing in community alternatives of inpatient care may contribute to and lead to better overall treatment experiences.
PROTOCOL REGISTRATION
The study protocol has been registered in the PROSPERO database on 30th May 2023 (CRD42023423439).
Topics: Humans; Caregivers; Commitment of Mentally Ill; Qualitative Research; Hospitals, Psychiatric; Mental Disorders; Mental Health Services
PubMed: 38937705
DOI: 10.1186/s12888-024-05914-w -
Supportive Care in Cancer : Official... Jun 2024While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not...
PURPOSE
While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach.
METHODS
This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC.
RESULTS
Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time.
CONCLUSION
Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory.
TRIAL REGISTRATION
ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).
Topics: Humans; Multiple Myeloma; Female; Male; Palliative Care; Middle Aged; Aged; Prospective Studies; Adult; Quality of Life; Cohort Studies; Depression; Anxiety
PubMed: 38937310
DOI: 10.1007/s00520-024-08665-2 -
Medical Humanities Jun 2024Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient...
Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient themselves, are frequently cited in law-making processes. These experiences of healthcare systems and the laws governing end-of-life procedures thereby interactively influence the future of medicine at the deathbed. With more countries legalising some form of assisted dying or opening political debate about the issue, addressing how these personal stories shape public opinions and social institutions is timely. In this current controversy, we question how medical humanities researchers are to make sense of the role of these stories in law-making, and critically reflect on a digital archive that seeks to make these interconnections visible. At the methodological level, the reciprocal interactions in assisted dying between medicine, law and the arts urges us to reconsider the conceptual foundations of interdisciplinary research in the medical humanities.
PubMed: 38937089
DOI: 10.1136/medhum-2024-012947 -
BMJ Supportive & Palliative Care Jun 2024Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This...
BACKGROUND
Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices.
METHOD
Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included.
FINDINGS
Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies.
CONCLUSIONS
The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support.
OTHER
This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).
PubMed: 38936971
DOI: 10.1136/spcare-2024-004974 -
BMJ Supportive & Palliative Care Jun 2024Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care....
OBJECTIVES
Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care. We aimed to assess how a targeted initiative to increase GOC documentation rates is associated with GOC documentation by race.
METHODS
We retrospectively assessed GOC documentation during a targeted GOC initiative for adult patients with an artificial intelligence predicted elevated risk of mortality. Patients were admitted to an urban academic medical centre in Pittsburgh, Pennsylvania between July 2021 and 31 December 2022.
RESULTS
The 3643 studied patients had a median age of 72 (SD 13.0) and were predominantly white (87%) with 42% admitted to an intensive care unit and 15% dying during admission. GOC documentation was completed for 28% (n=1019/3643). By race, GOC was documented for 30% black (n=105/351), 28% white (n=883/3161) and 24% other (n=31/131) patients (p=0.3933). There was no statistical difference in the rate of documented GOC among races over time (p=0.5142).
CONCLUSIONS
A targeted initiative to increase documented GOC conversations for hospitalised patients with an elevated risk of mortality is associated with similar documentation rates across racial groups. Further research is needed to assess whether this initiative may promote racial equity in GOC documentation in other settings.
PubMed: 38936969
DOI: 10.1136/spcare-2023-004657 -
The British Journal of General Practice... Jul 2024
Topics: Humans; Accidental Falls; Aged; Primary Health Care; Risk Factors; Female; Male; Risk Assessment
PubMed: 38936874
DOI: 10.3399/bjgp24X738765 -
Journal of Nursing Care Quality Jun 2024Frailty is independently associated with adverse patient outcomes after surgery. The current standards of postoperative care rarely consider frailty status.
BACKGROUND
Frailty is independently associated with adverse patient outcomes after surgery. The current standards of postoperative care rarely consider frailty status.
LOCAL PROBLEM
There was no standardized protocol to optimize specialized postoperative care for frail patients at an academic medical center.
METHODS
A quasi-experimental pre-/postimplementation study design, using the Reach, Effectiveness, Adoption, Implementation, Maintenance implementation framework, was utilized.
INTERVENTIONS
A frailty-specific postoperative order set (FPOS) was developed, including tailored nursing care, activity levels, and nutritional goals.
RESULTS
There were significant improvements in nurse's self-reported familiarity with frailty (P = .003) and FPOS awareness (P < .001). The number of orders for delirium prevention, elimination, nutrition, sleep promotion, and sensory support increased (P < .001).
CONCLUSIONS
Implementing an FPOS showed improvements in nurse frailty knowledge, awareness, and order set utilization.
PubMed: 38936412
DOI: 10.1097/NCQ.0000000000000784 -
PloS One 2024The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy...
BACKGROUND
The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
AIMS
The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
METHODS
In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
DISCUSSION
This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
TRIAL REGISTRATION
The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
Topics: Humans; Caregivers; Terminally Ill; Surveys and Questionnaires; Terminal Care; Family; Male; Female
PubMed: 38935665
DOI: 10.1371/journal.pone.0306282 -
Journal of Palliative Medicine Jun 2024When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when...
When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when potentially nongoal concordant care is expected by surrogates in the emergency department (ED). To demonstrate the effect of off-hour, phone consultations by palliative care clinicians in reducing the family and clinician distress when nongoal concordant care is expected in the ED. A partnership between palliative care and emergency medicine can decrease the burden of decision making and provide opportunities for modeling a goals-of-care discussion by experts in this important procedure.
Topics: Humans; Palliative Care; Emergency Service, Hospital; Advance Care Planning; Male; Female; Middle Aged; Aged; Decision Making; Adult; Aged, 80 and over
PubMed: 38935487
DOI: 10.1089/jpm.2023.0371