ABSTRACT
Background: There have been international concerns raised that, during the COVID-19 pandemic, there was an absence of good palliative care resulting in poor end-of-life care experiences. To date, there have been few studies considering the pandemic's impact on people dying from non-COVID-19 causes and their families and friends. In particular, there has been very less empirical research in relation to end-of-life care for Indigenous, migrant and minoritised ethnic communities. Objectives: To explore bereaved next-of-kin's views and experiences of end-of-life care under COVID-19 pandemic regulations. Design: This qualitative study involved in-depth one-off interviews with 30 ethnically diverse next-of-kin who had a family member die in the first year of the pandemic in Aotearoa, New Zealand. Methods: Interviews were conducted by ethnically matched interviewers/interviewees. A reflexive thematic analysis was used to explore and conceptualise their accounts. Results: A key finding was that dying alone and contracting COVID-19 were seen as equally significant risks by bereaved families. Through this analysis, we identified five key themes: (1) compromised connection; (2) uncertain communication; (3) cultural safety; (4) supported grieving and (5) silver linings. Conclusion: This article emphasises the importance of enabling safe and supported access for family/whanau to be with their family/wha-nau member at end-of-life. We identify a need for wider provision of bereavement support. We recommend that policy makers increase resourcing of palliative care services to ensure that patients and their families receive high-quality end-of-life care, both during and post this pandemic. Policy makers could also promote a culturally-diverse end-of-life care work force and the embedding of culturally-safety practices across a range of institutions where people die.
ABSTRACT
AIM: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. DESIGN: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. DATA SOURCES: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. REVIEW METHODS: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. RESULTS: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now - worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. CONCLUSION: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. IMPACT: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.
Subject(s)
Dementia , Lewy Body Disease , Caregivers , Grief , Humans , Quality of LifeABSTRACT
OBJECTIVE: To explore the current use of conventional and complementary medicines in Australians aged ≥ 50 years. DESIGN, SETTING AND PARTICIPANTS: Cross-sectional postal survey sent to a random sample of 4500 Australians aged ≥ 50 years between June 2009 and February 2010. MAIN OUTCOME MEASURES: Prevalence of medicines use, reasons for medicines use and sources of medicines. RESULTS: Response rate was 37.3%. Medicines use was very common; 87.1% of participants took one or more medicines and 43.3% took five or more in the previous 24 hours. Complementary medicines were used by 46.3% of participants, 87.4% of whom used both conventional and complementary medicines. The most commonly used medicines were antihypertensive agents (43.2% of participants), natural marine and animal products including fish oil and glucosamine (32.4%) and lipid-lowering agents (30.4%). Doctors recommended 79.3% of all medicines and 93.0% of conventional medicines. Pharmacists commonly recommended occasional medicines (ie, as needed), while friends, family and media most often influenced use of complementary medicines. CONCLUSIONS: The use of multiple medicines is common and higher than reported in the 1995 National Health Survey. Today, much medicines use is to prevent future disease by influencing risk factors. High levels of polypharmacy highlight the need to support the safe and effective use of medicines in the community. Although doctors recommend or prescribe most medicines, self-directed medication use is common. This highlights the need for consumer access to accurate information and strategies to improve health literacy about medicines.
Subject(s)
Censuses , Complementary Therapies/statistics & numerical data , Health Surveys/methods , Pharmaceutical Preparations/administration & dosage , Age Distribution , Aged , Australia , Complementary Therapies/methods , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Retrospective Studies , Time FactorsABSTRACT
BACKGROUND: Integrative medicine is a holistic approach to patient care that utilises both conventional and complementary therapy. This article compares the demographics of Australian general practitioners who do, and those who do not, practise integrative medicine, and their perceptions and knowledge about complementary medicines. METHODS: A postal survey sent to a random sample of 4032 Australian GPs. RESULTS: Data from 1178 GPs was analysed. While GPs who practise integrative medicine were more knowledgeable about complementary medicine and more aware of potential adverse reactions, there were significant knowledge gaps for both groups. DISCUSSION: Many GPs incorporate complementary medicines into their practice, whether or not they identify with the 'integrative medicine' label. General practitioners need to be well informed about the evidence base for, and potential risks of, complementary medicines to ensure effective decision making. Use of available resources and inclusion of complementary medicine in education programs may assist this.