Craftivism as Inquiry: Holding Life’s Threads

In this article, we share insights regarding an arts-based research project where carers of people with dementia conveyed their experiences in cloth. Carers face high rates of mental ill health and burnout, while forming a largely undervalued and unrecognised workforce. Through this project, carers’ knowledge was valued and amplified using an innovative methodology – craftivism. During a series of five workshops in 2021, a small group of carers, researchers and artists gathered online to develop an exhibition of craftivist textile works. They evoked the complexity of their makers’ journeys supporting loved ones at the end of life, finding joy and meaning despite grief and isolation. Making and crafting, together, we built community and highlighted the importance of the relationships at the heart of care: holding life’s threads. This article contributes to a growing literature surrounding arts-based methods in qualitative research, advocacy, and community life, while providing another platform to share and celebrate the stories of all those involved in the project

Older persons’ and their caregivers’ perspectives and experiences of research participation with impaired decision-making capacity: A scoping review

Background and Objectives: Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons’ and caregivers’ perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media

Pilot assessment of malaria diagnosis and education using virtual microscopy for laboratories in Africa and developing nations

Microscopy remains the internationally recognised gold standard for diagnosing malaria; however the ability to reach a correct diagnosis is affected by training, experience and availability of laboratory resources. With the aim of improving the accuracy of diagnosis, an interactive training programme is being developed using ‘‘Virtual slides’’ delivered via the internet, which aim to replicate the microscope experience. These will be used to assess current diagnostic accuracy, provide annotated feedback, create training materials and assess the effectiveness of the pilot training scheme. The programme is supported by the World Health Organization (WHO). Forty-two participants were recruited from 14 laboratories recommended by the WHO, UK National External Quality Assessment Scheme for general haematology (UKNEQAS (H)) and the Liverpool School of Tropical Medicine. Participants are in Kenya, Nigeria, Chile, Colombia, Hong Kong, India and Lebanon. After the initial training programme an internet based training package was delivered over four months, providing annotated feedback along with detailed information and images of cells containing parasites from the different species and stages of infection. Quizzes were also used to allow immediate feedback throughout the training. Results from the initial assessment indicate that the correct diagnosis was made in 74.5% of cases, with the correct species being identified in 53.4%. The results returned were influenced by the Plasmodium species present, the parasite density of the image, the use of a thick or thin film to generate the image, the presence of staining artefact and other haematological disorders. The comparison of the individual’s results after the completion of the final assessment stage will be compared with the initial assessment results to see what effect the training has on the diagnosis of malaria. The training is currently being distributed to UK participants

The COVID-19 pandemic: Bereavement experiences between hospital and home deaths in palliative care

Background: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. Aim. To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. Design: A cross-sectional online survey was completed by bereaved adults during 2020−2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. Setting/participants: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. Results: The COVID-19 public health measures influenced people’s decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. Conclusions: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death

[In Press] The COVID-19 pandemic : bereavement outcomes between hospital and home deaths in palliative care

BACKGROUND Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS Of 744 bereaved people; 69% (n=514) had a death in hospital and 31% (n=220) at home. RESULTS The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months post-death scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS These findings highlight the need for health services to recognise bereavement as fundamental to palliative and health care and provide pre- and post-death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death

Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review

Background and Objectives: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media