"Beyond Feasibility": A Qualitative Study of Patients, Their Whanau (Family) and Staff Perspectives and Experiences of a Non- Pharmacological Delirium-Prevention Intervention in Two Aotearoa/New Zealand Hospices.

CONTEXT: Delirium is prevalent in the hospice population. Despite causing significant distress to patients and families, delirium is under-recognised. There is a need to better understand delirium prevention and outcomes in this population including people's experiences of delirium-prevention strategies in different cultural contexts. OBJECTIVES: To determine whether the "PRESERVE Aotearoa" delirium prevention intervention was feasible and acceptable for Maori (indigenous peoples of Aotearoa/ New Zealand) and non-Maori patients with advanced cancer, their families (called whanau in this paper), and clinical staff. METHODS: A qualitative semistructured interview substudy of a cohort PRESERVE Aotearoa feasibility study codesigned with a Maori partner to ensure inclusion of Maori-centred values. The study was underpinned conceptually by He Awa Whiria (braided rivers)-combining Western and Maori knowledges. Data were analysed using Hopwood and Srivasta's framework. RESULTS: Twenty-six patients and their whanau, 21 clinical staff and five researchers from two stand-alone hospices in the North Island, Aotearoa/New Zealand. Finding showed that, for the most part, participants considered the study interventions feasible and acceptable. Inductive analysis resulted in four themes highlighting the importance to whanau of their participation in the study: benefits of learning about delirium; the affirmation of the caregiver role and whanau-centred care; valuing fundamentals of care; and research as legacy. CONCLUSION: This qualitative study found that it is feasible and acceptable to study multicomponent nonpharmacological delirium-prevention interventions in Aotearoa/New Zealand hospice inpatient units. The study also highlights the value of Maori-centred approaches and whanau involvement in these settings.

Systematic Review of Models of Effective Community Specialist Palliative Care Services for Evidence of Improved Patient-Related Outcomes, Equity, Integration, and Health Service Utilization.

Background: The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous lack of consensus on criteria for defining and characterizing models of care has restrained direct comparison between these models and limited the evidence base to inform policy makers. A rapid review for studies published up to 2012 was unable to find an effective model. Aim: To identify effective models of community specialist palliative care services. Design: A mixed-method synthesis design reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. Prospero: CRD42020151840. Data sources: Medline, PubMed, EMBASE, CINAHL and the Cochrane Database of Systematic Reviews were searched in September 2019 for primary research and review articles from 2012 to 2019. Supplementary search was conducted on Google in 2020 for policy documents to identify additional relevant studies. Results: The search yielded 2255 articles; 36 articles satisfied the eligibility criteria and 6 additional articles were identified from other sources. Eight systematic reviews and 34 primary studies were identified: observational studies (n = 24), randomized controlled trials (n = 5), and qualitative studies (n = 5). Community specialist palliative care was found to improve symptom burden/quality of life and to reduce secondary service utilization across cancer and noncancer diagnoses. Much of this evidence relates to face-to-face care in home-based settings with both round-the-clock and episodic care. There were few studies addressing pediatric populations or minority groups. Findings from qualitative studies revealed that care coordination, provision of practical help, after-hours support, and medical crisis management were some of the factors contributing to patients' and caregivers' positive experience. Conclusion: Strong evidence exists for community specialist palliative care to improve quality of life and reducing secondary service utilization. Future research should focus on equity outcomes and the interface between generalist and specialist care.

Community specialist palliative care services in New Zealand: a survey of Aotearoa hospices.

AIM: Community specialist palliative care (SPC) in Aotearoa New Zealand is provided by independent hospices. Substantial increase in demand for palliative care is projected in the next 20 years. We aimed to describe the current landscape of SPC services across Aotearoa whilst incorporating an equity lens. METHODS: A descriptive cross-sectional survey was undertaken to describe aspects of hospice service and populations served. Survey links were emailed to clinical, or service leads of hospices identified via Hospice New Zealand Website. RESULTS: All eligible hospices (n=32) completed the online survey. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Six hospices (19%) did not provide afterhours cover. Fifteen (47%) hospices did not have Maori cultural position and median full time equivalent across all hospices for such position was one day per week. Only nine (28%) hospices provided palliative medicine specialist training. CONCLUSION: Areas of inconsistency were highlighted including afterhours access and cultural support for Maori. The capacity of the present system to address current and future shortages of palliative medicine specialist is questioned.

Food, nutrition and cancer: perspectives and experiences of New Zealand cancer survivors.

AIM: This research sought to understand and describe cancer survivors' perspectives and post-diagnosis experiences of food and nutrition, with a particular focus on barriers to healthy eating, health equity, and Maori and Pacific perspectives. METHOD: Data were collected using semi-structured interviews with cancer survivors from three different ethnic groups (Maori, Pacific Peoples, and New Zealand European). Thematic analysis was undertaken to identify both similar and contrasting experiences and perspectives in relation to topics of interest. Data analysis also sought to identify any trends indicating differences between ethnic groups. RESULTS: Limited awareness of the role nutrition has in cancer recovery or prevention, combined with little or no access to nutrition advice/support, meant that healthy dietary change was not a focus for some cancer survivors in this study, whereas others invested considerable time and money accessing nutrition information and support outside of cancer care services. Financial limitations (eg, cost of healthy food and low income) and lack of practical support were also important barriers to post-diagnosis healthy eating. CONCLUSION: There is a need for more widely available cancer-specific nutrition advice and support in New Zealand. Interventions to address financial barriers and increase access to cancer-related nutrition advice and support have the potential to improve cancer outcomes and reduce inequities in cancer outcomes.

Disparities in post-operative mortality between Maori and non-Indigenous ethnic groups in New Zealand.

AIM: To describe disparities in post-operative mortality experienced by Indigenous Maori compared to non-Indigenous New Zealanders. METHODS: We completed a national study of all those undergoing a surgical procedure between 2005 and 2017 in New Zealand. We examined 30-day and 90-day post-operative mortality for all surgical specialties and by common procedures. We compared age-standardised rates between ethnic groups (Maori, Pacific, Asian, European, MELAA/Other) and calculated hazard ratios (HRs) using Cox proportional hazards regression modelling adjusted for age, sex, deprivation, rurality, comorbidity, ASA score, anaesthetic type, procedure risk and procedure specialty. RESULTS: From nearly 3.9 million surgical procedures (876,976 acute, 2,990,726 elective/waiting list), we observed ethnic disparities in post-operative mortality across procedures, with the largest disparities occurring between Maori and Europeans. Maori had higher rates of 30- and 90-day post-operative mortality across most broad procedure categories, with the disparity between Maori and Europeans strongest for elective/waiting list procedures (eg, elective/waiting list musculoskeletal procedures, 30-day mortality: adj. HR 1.93, 95% CI 1.56-2.39). CONCLUSIONS: The disparities we observed are likely driven by a combination of healthcare system, process and clinical team factors, and we have presented the key mechanisms within these factors.

Clinical and cost-effectiveness of an online-delivered group-based pain management programme in improving pain-related disability for people with persistent pain-protocol for a non-inferiority randomised controlled trial (iSelf-help trial).

INTRODUCTION: Persistent non-cancer pain affects one in five adults and is more common in Maori-the Indigenous population of New Zealand (NZ), adults over 65 years, and people living in areas of high deprivation. Despite the evidence supporting multidisciplinary pain management programmes (PMPs), access to PMPs is poor due to long waiting lists. Although online-delivered PMPs enhance access, none have been codesigned with patients or compared with group-based, in-person PMPs. This non-inferiority trial aims to evaluate the clinical and cost-effectiveness of a cocreated, culturally appropriate, online-delivered PMP (iSelf-help) compared with in-person PMP in reducing pain-related disability. METHODS AND ANALYSIS: Mixed-methods, using a modified participatory action research (PAR) framework, involving three phases. Phase I involved cocreation and cultural appropriateness of iSelf-help by PAR team members. Phase II: The proposed iSelf-help trial is a pragmatic, multicentred, assessor-blinded, two-arm, parallel group, non-inferiority randomised controlled trial. Adults (n=180, age ≥18 years) with persistent non-cancer pain eligible for a PMP will be recruited and block randomised (with equal probabilities) to intervention (iSelf-help) and control groups (in-person PMP). The iSelf-help participants will participate in two 60-minute video-conferencing sessions weekly for 12 weeks with access to cocreated resources via smartphone application and a password-protected website. The control participants will receive group-based, in-person delivered PMP. Primary outcome is pain-related disability assessed via modified Roland Morris Disability Questionnaire at 6 months post intervention. Secondary outcomes include anxiety, depression, stress, pain severity, quality of life, acceptance, self-efficacy, catastrophising and fear avoidance. Data will be collected at baseline, after the 12-week intervention, and at 3 and 6 months post intervention. We will conduct economic analyses and mixed-method process evaluations (Phase IIA). ETHICS AND DISSEMINATION: The Health and Disability Ethics Committee approved the study protocol (HDEC18/CEN/162). Phase III involves dissemination of findings guided by the PAR team as outcomes become apparent. TRIAL REGISTRATION NUMBER: ACTRN 12619000771156.

The experiences of young people with chronic illness in New Zealand: A qualitative study.

BACKGROUND: Around 10% of young people suffer from chronic health conditions, and their health care needs are different from those of children or adults. Most research about young people's chronic illness focuses on specific conditions, on younger children's experience, and on the perspectives of parents. This study explored the experiences of young people with two very different chronic conditions (asthma and cancer) and their perception of the New Zealand health system's response to their needs. METHODS: This was a collaborative research process where eight young co-researchers who had asthma or cancer were employed to work alongside the research team to develop protocols, interview peers, and assist with analysis. The challenges of this process are described in the article. Twenty-one young people between ages 15 and 27 from two urban areas of New Zealand participated in semistructured open-ended interviews about their health care experiences. Sixteen participants were female, and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis), and 10 had asthma. Purposeful sampling meant that 80% of the participants with asthma were identified as Maori and the other participants identified with a range of other ethnic groups. Data were thematically coded, and coresearchers were consulted to derive the ultimate findings. RESULTS: Chronic illness disrupted the trajectory of young people's lives and had significant effects on their relationships. The New Zealand health system generally did not respond well to the needs of these young people, but many encountered extraordinary individuals who supported them effectively. The experiences of some indigenous participants indicate that health professionals require effective cultural competence training. CONCLUSIONS: This study provides insights into how young people with very different conditions experience the health system. Young people should be consulted and actively included in decision making about making health systems responsive to their diverse needs.

Pill for this and a pill for that: A cross-sectional survey of use and understanding of medication among adults with multimorbidity.

OBJECTIVE: To understand the challenges managing medication use and knowledge of people living with multimorbidity. METHODS: A cross-sectional survey of 234 adults with multimorbidity, identified using retrospective hospital discharge data. Participants were recruited from two primary health organisations in New Zealand. RESULTS: Three quarters of participants (75%) were prescribed four or more medications, and one in four (27%) were prescribed eight or more medications. Participants reported knowing what their medications were for (88%, 95% CI 81.4-93.8) and when to take them (99%, 95% CI 97.5-99.9). However, over a fifth (22%, 95% CI 13.7-30.4) reported some problems managing multiple medications, and 40% (95% CI 30.2-50.2) reported a problem with side effects. CONCLUSION: The results highlight the need to consider how prescribing can be adapted for people with multimorbidity and move beyond the application of multiple disease-specific guidelines.

The role and potential of community-based cancer care for Maori in Aotearoa/New Zealand.

AIM: To investigate the contribution to cancer care and prevention by Maori health provider organisations (MHPs) in Aotearoa/New Zealand. METHODS: A nationwide postal survey of all MHPs (n=253) was undertaken in 2011. The response rate was 55%. RESULTS: We found that MHPs are delivering a wide range of programmes including cancer prevention services focussed on health promotion, advocacy, information and support. MHPs identified financial hardship, transport difficulties, and lack of information as the greatest barriers to cancer care. Culturally safe care by mainstream providers would improve cancer service provision overall. The importance of trust and long-term relationships, with a focus on families rather than individual-based care, was highlighted. CONCLUSION: These findings could lead to substantial improvements in quality of life for Maori cancer patients. This is the first study to show how indigenous health providers contribute to cancer care and prevention in Aotearoa/New Zealand.

Exploring Maori cancer patients', their families', community and hospice views of hospice care.

BACKGROUND: Despite poor cancer survival statistics, Maori do not readily access hospice services. This study aims to explore how hospice services respond to Maori by investigating the different influences and interactions between three perspectives of hospice care. METHOD: The authors conducted a Maori-centred, cross-sectional qualitative study by undertaking semi-structured interviews with hospice patients and whanau (families) (n=8), hospice representatives (n=4), and representatives from three Maori health provider organisations (n=5). CONCLUSIONS: The study found that negative perceptions of hospice are being changed by hospices' relationships with other organisations and positive stories from whanau. Involvement from whanau, continuity of care and after-hours care with a greater Maori workforce and a further emphasis on culturally safe care are critical for this work to gain momentum. Findings can be of use to further develop quality of care indicators that reflect the perspectives of patients and whanau, and those who provide their care.

Dissonant roles: The experience of Maori in cancer care.

Indigenous peoples have poorer health outcomes than their non-indigenous counterparts and this applies to cancer outcomes for Maori in Aotearoa/New Zealand. Differential access to and quality of healthcare contributes to poorer survival rates for Maori. This research provides insight into some of the mechanisms that hinder and facilitate care access. Thirty four people who had undergone cancer treatment (19 Maori and 15 non-Maori) were interviewed by two Maori researchers. The analysis of the interview transcripts was informed by membership categorization analysis. This form of analysis attends to the categories that are used and the activities and characteristics associated with those categories. From this analysis it is argued that the classical patient role, or sick role, inadequately captures the kind of role that some Maori take in relation to their healthcare. Maori can also have culturally specific family (whanau) influences and a greater draw towards alternative approaches to healthcare. Dissonant roles contribute to a different experience for Maori. A better understanding of the categories and roles that are relevant to those who have cancer provides opportunities to attenuate the monocultural impacts of healthcare.

'It's whanaungatanga and all that kind of stuff': Maori cancer patients' experiences of health services.

INTRODUCTION: There are unacceptable ethnic differences in cancer survival in Aotearoa/New Zealand. For people with cancer, quality of life and survival are shaped by access to care, but research on Maori access to, and through, cancer care is limited. Internationally, research has shown that primary care plays an important role in providing patient-centred, holistic care and information throughout the cancer care journey. Additionally, Maori health providers provide practical support and facilitate access to all levels of health care. Here we describe the cancer journeys of Maori patients and whanau and identify factors that may facilitate or inhibit access to and through cancer care services. METHODS: Twelve Maori patients affected by cancer and their whanau (family) in the lower North Island took part in face-to-face semi-structured interviews exploring their experiences of cancer screening, diagnosis, treatment, survival and palliative care. FINDINGS: Three key areas were identified that impacted upon the cancer care journey: the experience of support; continuity of care; and the impact of financial and geographic determinants. CONCLUSION: Primary care plays a key role in support and continuity of care across the cancer journey. Alongside interpersonal rapport, a long-term relationship with a primary health provider facilitated a more positive experience of the cancer care journey, suggesting that patients with a 'medical home' are happier with their care and report less problems with coordination between services. Positive, longstanding relationships with general practitioners and Maori health providers assisted patients and whanau with the provision and understanding of information, alongside practical support.