Improving dementia and palliative care through the co-design of an integrated model of care.

A need exists to improve end-of-life care for people with advanced dementia, by integrating available services. Stakeholders on the Central Coast of New South Wales united to co-design an improved model of care that would integrate care across care settings. The aim of this project was to co-design a model of integrated, person-centred palliative care for people with dementia at the end of life. This case study describes seven co-design workshops which took place in 2023 to develop a program logic model. Workshops were run in a hybrid format, with stakeholders attending in person and online. Workshops were attended by an average of 26 stakeholders including people and carers with lived experience of dementia, healthcare workers from hospital and community-based services (public and private), primary care clinicians, and participants from the not-for-profit sector and academia. Stakeholders developed a shared mission and purpose and identified priority areas for improving palliative care for people with advanced dementia. This led to the development of a program logic model, which included components relating to education for people with dementia, carers, and professionals, care coordination and referrals, and regular multidisciplinary case conferences. Feedback on the model from a new audience identified areas for improvement. The stakeholder group participated in a survey to evaluate the effectiveness of the co-design. The survey found that stakeholders were satisfied with the model of care the group developed. This project highlighted the value of adopting a co-design approach with stakeholders to develop a new model of care.

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings.

BACKGROUND: The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings. METHODS: A retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models. RESULTS: The characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase. CONCLUSION: This study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.

Improving end-of-life care for people with dementia: a mixed-methods study.

BACKGROUND: Improving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement. METHODS: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach. RESULTS: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care. CONCLUSIONS: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.

Models of care for people with dementia approaching end of life: A rapid review.

BACKGROUND: People with dementia have different care and support needs at their end of life compared to people with other life-limiting illnesses, and general palliative care models may not meet the needs of people with dementia and their carers and families. Some dementia-specific end-of-life care models have been implemented, and a summary of existing models was undertaken to inform development of a local model. AIM: To identify best-practice models of care for people in the advanced and end stages of dementia, and their families and carers. DESIGN: A rapid review with narrative summary of peer-reviewed articles and grey literature was conducted. DATA SOURCES: Ten databases were searched for articles published between January 2000 and April 2022. Inclusion criteria were: all care settings; AND the model focuses on people with end-stage or advanced dementia; AND contained multiple components. RESULTS: Nineteen articles or reports, describing twelve dementia-specific models of end-of-life care in a range of care settings were identified for inclusion in the review. There is strong evidence that the principles of best practice palliative care for people with advanced dementia are well known, but limited examples of translation of this knowledge into integrated models of care. The key issues that emerged from the findings were: referral and admission to care, integration of care, sustainability and evaluation. CONCLUSIONS: Findings can be used to inform development of improved end-of-life care pathways for people with dementia, but well-designed research studies are needed to evaluate the effectiveness of integrated models of care for this vulnerable population.

Coalescing, Cross-Pollinating, Crystalising: Developing and Evaluating an Art Installation About Health Knowledge.

The HIVE is an arts-based knowledge translation (ABKT) project that showcases work undertaken across Maridulu Budyari Gumal: the Sydney Partnership for Health, Education, Research and Enterprise (SPHERE). Here, we present two distinct forms of data (reflective and evaluative) to tell the story of The HIVE and outline the project's achievements and shortcomings. Reflective data are used to describe the process of establishing a creative, cross-disciplinary collaboration, in order to devise and produce The HIVE. Evaluative data are used to assess the impact of The HIVE on audiences. By presenting reflective and evaluative data together, we highlight that impact in ABKT cannot be reduced to an assessment of audience engagement with an ABKT end-product. Although audience impact is vital, in our experience, The HIVE also had a powerful impact on the researchers, health service users, artists and others who worked together to create it. The process of creating The HIVE informed research- and art-practice change, forged interdisciplinary networks, and enabled the growth of new patterns of knowledge sharing and collaboration. The reflective and evaluative data we present attest to different forms of impact resulting from the creation and exhibition of an ABKT project.

Hospital-based assistant in Midwifery role for undergraduate midwifery students: A survey exploration.

PROBLEM: Little is known about the experiences of undergraduate midwifery students employed as Assistants in Midwifery (AIM) in Australia. BACKGROUND: Assistants in Nursing have been embedded in the Australian health system for many years, but the AIM role is relatively new. Undergraduate Bachelor of Midwifery students, in second or third year, can gain employment as an AIM at hospital maternity units. Little is known about the scope of practice for these roles and the experiences of AIM. AIM: This study aimed to explore the experiences and scope of practice of AIM in New South Wales (NSW), Australia, over the last five years. METHODS: A Qualtrics online survey enabled collection of quantitative and qualitative data from 128 respondents in late 2019. This was accompanied with the analysis of position descriptions for all AIM jobs advertised between September 2019 and February 2020. FINDINGS: Analysis of AIM position descriptions reflected nursing language rather than midwifery. Survey responses demonstrated ambiguity about the AIM scope of practice and the appropriate level of supervision required to perform the role. Qualitative data revealed the many benefits of the role for midwifery students. DISCUSSION: Opportunities to participate in midwifery assistant work enhances student confidence and improves job readiness. However, a clearly defined scope of practice is one of the most important components of any employment model for undergraduate students. Clarification of the role and scope of practice of the AIM role is long overdue. There is ongoing need for advocacy to ensure that students working as AIM are employed to carry out midwifery activities and are supervised by midwives. CONCLUSION: This project provides insight into the advantages and disadvantages of working as an AIM whilst studying for a Bachelor of Midwifery degree. While the AIM position reaps many rewards for students, appropriate supervision in the workplace requires availability of adequate numbers of employed registered midwives.

Supports and Interventions for Carers of a Person with Depressive or Anxiety Symptomology: A Systematic Review.

An increasing body of research attests to the capacity of evidence-based interventions to improve outcomes for informal carers. A review of suitable supports and interventions for carers of a person with depressive or anxiety symptomology is timely. This systematic review explores intervention suitability evidence for this carer group. Searches for relevant primary studies were conducted in six databases across a 15-year timeframe (October 2004-October 2019). Studies were assessed and compared narratively and thematically. Qualitative themes were synthesised with quantitative studies to explore the extent to which carer preferences were embedded in interventions. The initial literature search produced 13,183 studies. Six studies-three randomised controlled trials (RCTs) and three mixed-method studies-were included following a double-blinded screening process, a review of reference lists and risk of bias assessment. Included studies contributed either intervention efficacy or acceptability evidence. The synthesis of qualitative themes with quantitative studies found that carer-specific needs and targeted psychoeducation were featured in interventions from all six quantitative studies. Current evidence for appropriate supports and interventions for this carer group is limited. The review uncovers a lack of interventions for carers of a person with anxiety symptomology and limited intervention suitability evidence for carers of a person with depressive symptomology. More research is needed to explore the needs and preferences of this carer group, and how best to support them.

Breastfeeding support at an Australian Breastfeeding Association drop-in service: a descriptive survey.

BACKGROUND: In Australia, during the early establishment phase of breastfeeding, women can access telephone peer support counselling provided by the Australian Breastfeeding Association (ABA) however options for face-to-face peer support are limited. The known factors which improve ongoing and exclusive breastfeeding include face-to-face support, peer and/or professional support, and trained personnel. This study aimed to examine women's experiences of accessing one breastfeeding drop-in peer support service provided by trained peer support volunteer counsellors from the ABA. METHODS: Women who accessed the service were invited, in 2014, to participate in an anonymous online survey which collected both quantitative and qualitative data. Participants were asked about their experiences of breastfeeding support, as well as their experiences of the drop-in service. In total, 53 women completed the online survey, and subsequent analysis generated descriptive statistics and qualitative themes. RESULTS: Responses to the survey revealed that women attended the drop-in service with infants ranging in age from less than 1 week through to 12 months of age. Most women reported attending with infants aged 0-8 weeks of age (72%). The predominant presenting problems identified were sore/damaged nipples, difficulties with infant latching to the breast, or concerns about using nipple shields. Analysis of the open text qualitative responses revealed one overarching theme 'Support to continue breastfeeding' and four subthemes: 'feeling listened to and not judged'; 'emotional support and confidence building'; 'the importance of face-to-face, practical support'; and 'the need for ongoing, free access'. DISCUSSION: In this study many women were seeking support for ongoing breastfeeding difficulties. Health professionals who had limited breastfeeding knowledge and skills were identified as most unhelpful in providing support with ongoing breastfeeding difficulties. Women valued having access to trained peer counsellors, who had the capacity to provide non-judgemental, face-to-face support; who could sit through a feed; in a space that was 'safe'; and who could enhance a woman's confidence with breastfeeding over the course of her full breastfeeding journey. CONCLUSIONS: Reactive peer support, provided in response to need, at an Australian Breastfeeding Association drop-in service, was described by participants as pivotal to enabling their ongoing breastfeeding.

Designing a model of breastfeeding support in Australia: An appreciative inquiry approach.

In Australia, one of the most frequent reasons for not breastfeeding is a previously unsuccessful experience. This qualitative study used an appreciative inquiry approach to co-design a model of peer and professional breastfeeding support, in a metropolitan area of New South Wales (NSW) Australia, in collaboration with women who have had previous negative experiences of breastfeeding. In total, 30 mothers, health professionals and peer supporters participated in a two-part study, involving interviews and a collaborative workshop. The data were analysed using content analysis. The appreciative inquiry approach led to a solution focused attitude among participants and a commitment to improving breastfeeding support. We noted a level of apathy when the participant groups were interviewed individually prior to the collective workshop. During the collaborative workshop, all three participant groups came together to look at what was currently working well and designed improvements for the future. Midwifery care was identified as important for the start of the breastfeeding journey, during pregnancy and for the first 1-2 weeks after birth, but thereafter it was community and trained peer counsellors who were prioritised for breastfeeding support. Participants identified the need for a variety of support options including face-to-face meetings, Skype meetings, phone calls and/or texting. Workshop participants emphasised the need for women, especially those with previous negative experiences, to be linked in with their local peer support community group. An appreciative inquiry approach brought together all key stakeholders to develop practice-based change which included the end user and care providers. The collaborative workshop enabled participants to come together, as individuals, rather than as designated health professionals or trained peer counsellors, or breastfeeding women with negative experiences. This led to a unified approach and a harnessing of collective energy to initiate positive change.

Taking the path of least resistance: a qualitative analysis of return to work or study while breastfeeding.

Background: In order to meet World Health Organization recommendations for breastfeeding, many women need to combine breastfeeding with return to work or study. Barriers are often encountered when returning to work or study, which can lead to premature cessation of breastfeeding. This study aimed to explore Australian women's experiences of breastfeeding at one multi-campus university. Method: This paper draws on the qualitative findings from a mixed-methods study conducted between April and November 2017. An online survey was used to explore women's experiences of breastfeeding at university. In total, 108 people participated in the survey. After the deletion of incomplete surveys, 79 staff and students survey responses were analysed. In-depth interviews were also carried out with 10 staff and students. Open text responses and in-depth interviews were analysed using thematic analysis. Results: The analysis revealed four themes. The first theme, University as a positive and progressive environment for breastfeeding, explores staff and students' experiences of maternity leave, flexible work arrangements, and on-campus childcare, and their relationships with tutors, supervisors, managers and colleagues. The second theme, Finding private and safe spaces for breastfeeding, presents staff and students' experiences of using designated rooms, car parks, corridors, classrooms, and offices to breastfeed and express breast milk, and their experiences related to storage of breast milk. The third theme, Feeling self-conscious and unprofessional, reflects women's experiences of mixing their professional and personal lives, and feeling guilty for taking time out to breastfeed. The fourth theme, Developing resilience to judgement, captures women's realisation that breastfeeding on campus requires the development of a "thick skin" and the capacity to not be offended easily. Conclusions: Sustaining breastfeeding requires time and commitment on behalf of the mother, as well as a supportive workplace or study environment. Transforming university campuses into breastfeeding friendly environments is long overdue and requires organisational commitment to achieve genuine reform.

Young Australian women's accounts of smoking and quitting: a qualitative study using visual methods.

BACKGROUND: Although the overall rate of smoking in Australia continues to decline, the rate of decline has begun to slow. Rates of smoking among young women in Australia have been a particular concern, which has led to the development of targeted public health campaigns. Poststructuralist theory has successfully been used in research to explore the way in which young women experience smoking. However, there is an absence of poststructuralist analysis of young women's experiences of quitting. This study aims to address this gap. METHODS: We carried out 27 interviews with young Australian women smokers and ex-smokers. Eighteen of those women then participated in a photography activity and follow-up interviews. A Foucauldian discourse analysis of the data was conducted. RESULTS: Through our analysis, we identified three discourses: 'The irresponsibility of smoking: Quitting as responsible', 'The difficulties of quitting: Smoking as addictive', and 'Making a decision to quit: Smoking as a choice'. In relation to these discourses, participants took up contradictory positions of responsibility and resistance, addiction and agency. Taking up these positions had implications for young women's subjectivity, and the way they engaged with tobacco controls and cessation support. CONCLUSIONS: The analysis highlights the complex and contradictory nature of young women's experiences with smoking and quitting. The study's findings are considered in relation to the improvement of tobacco control policies and cessation support programmes targeted at young women.

An Intersectional Analysis of Women's Experiences of Smoking-Related Stigma.

In this article, we explore how young women encounter and counter discourses of smoking-related stigma. Twenty-seven young Australian women, smokers and ex-smokers, took part in interviews. A sub-sample of 18 participants took photographs to document their smoking experience, and took part in a second interview. Data were analyzed through Foucauldian discourse analysis. Four discourses were identified: "smoking as stigmatized," "the smoking double standard," "smoking as lower class," and "smokers as bad mothers." The women negotiated stigma in a variety of ways, shifting between agreeing, disagreeing, challenging, and displacing stigma onto "other" smokers. These experiences and negotiations of smoking-related stigma were shaped by intersecting identities, including gender, cultural background, social class, and mothering, which at times, compounded levels of stigmatization. It is concluded that tobacco control measures should consider the negative implications of smoking-related stigma, and the potential for women to experience compounding levels of stigma.