Psychosocial well-being in Long-Term Care in the Wake of COVID-19: Findings from a Qualitative Study in New Zealand.

Drawing on Mason Durie's (1985) New Zealand Whare Tapa Wha model of health (spiritual, emotional, physical, and family domains), the goal was to link a model of well-being with the lived reality for long-term care residents and bereaved family members during COVID-19. Interviews were conducted with five residents and six family members of previous residents of one long-term care in one urban centre between July and September 2020. The increased demands imposed by the pandemic highlighted the gaps in well-being for residents and families. In particular, the inability to connect with family during COVID-19 restrictions reduced perceptions of well-being for residents. Study findings indicate that the provision of well-being for older adults and families in long-term care extends beyond the narrow bounds of the biomedical model. The Whare Tapa Wha model provides a valuable framework describing the holistic balance needed between the four health domains.

Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.

BACKGROUND: The number of people living with dementia (PLWD) in Aotearoa New Zealand (NZ) was estimated at 96,713 in 2020 and it is anticipated that this number will increase to 167,483 by 2050, including an estimated 12,039 Maori (indigenous people of NZ) with dementia. Experiencing urinary incontinence (UI) or faecal incontinence (FI) is common for PLWD, particularly at the later stages of the disease. However, there is no robust estimate for either prevalence or incidence of UI or FI for PLWD in NZ. Although caregivers rate independent toilet use as the most important activity of daily living to be preserved, continence care for PLWD in the community is currently not systematised and there is no structured care pathway. The evidence to guide continence practice is limited, and more needs to be known about caregiving and promoting continence and managing incontinence for PLWD in the community. This project will seek to understand the extent of the challenge and current practices of health professionals, PLWD, caregivers and family; identify promising strategies; co-develop culturally appropriate guidelines and support materials to improve outcomes; and identify appropriate quality indicators so that good continence care can be measured in future interventions. METHODS AND ANALYSIS: A four-phase mixed methods study will be delivered over three years: three phases will run concurrently, followed by a fourth transformative sequential phase. Phase 1 will identify the prevalence and incidence of incontinence for PLWD in the community using a cohort study from standardised home care interRAI assessments. Phase 2 will explore continence management for PLWD in the community through a review of clinical policies and guidance from publicly funded continence services, and qualitative focus group interviews with health professionals. Phase 3 will explore experiences, strategies, impact and consequences of promoting continence and managing incontinence for PLWD in the community through secondary data analysis of an existing carers' study, and collecting new cross-sectional and longitudinal qualitative data from Maori and non-Maori PLWD and their caregivers. In Phase 4, two adapted 3-stage Delphi processes will be used to co-produce clinical guidelines and a core outcome set, while a series of workshops will be used to co-produce caregiver resources.

The challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic: An integrative review.

OBJECTIVES: The growing demand for palliative care has been accelerated due to the COVID-19 pandemic. However, providing community-based palliative care was also more difficult to do safely and faced several challenges. The goal of this integrative review was to identify, describe, and synthesize previous studies on the challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic. METHODS: Searches were carried out on the Ovid MEDLINE, CINAHL, PsycINFO, Social Care Online, PubMed, Embase, and Expanded Academic databases. Journals typically reporting palliative care and community health studies were also searched (Palliative Medicine, Journal of Pain and Symptom Management, and Health & Social Care in the Community). All articles were peer-reviewed and published in English between December 2019 and September 2022. RESULTS: Database and hand searches identified 1231 articles. After duplicates were removed and the exclusion criteria applied, 27 articles were included in the final review. Themes in the research findings centered on 6 interconnected categories. The challenges imposed by the pandemic (lack of resources, communication difficulties, access to education and training, and interprofessional coordination), as well as the varying levels of success of the health-care responses, impacted the well-being of health professionals and, in turn, the well-being and care of patients and families. SIGNIFICANCE OF RESULTS: The pandemic has provided the impetus for rethinking flexible and innovative approaches to overcome the challenges of delivering community palliative care. However, existing governmental and organizational policies require revision to improve communication and effective interprofessional collaboration, and additional resources are needed. A blended model of virtual and in-person palliative care delivery may provide the best solution to community palliative care delivery moving forward.

Patient safety and hospital visiting at the end of life during COVID-19 restrictions in Aotearoa New Zealand: a qualitative study.

BACKGROUND: Visiting restrictions were enacted in Aotearoa New Zealand to reduce transmission of COVID-19 and protect the healthcare system. This research aimed to investigate the experiences of families and clinicians of hospital visiting for people with palliative and end-of-life care needs during restrictions. METHODS: Semistructured interviews were completed between March and October 2021 with family members and clinicians who had personally experienced enactment of visiting restrictions during pandemic restrictions. A critical realist ontology was used to approach data analysis, sorting and coding to generate themes. RESULTS: Twenty-seven participants were interviewed, 13 being families who had experienced bereavement of a family member during the restrictions: seven nurses or physicians and seven being non-bereaved family members. Four themes were generated: patient safety-(re)defining the 'Visitor'; the primacy of SARS-CoV-2-patient safety and negotiating risk; dying alone: enduring harms; and agency, strategies and workarounds. CONCLUSION: Visitor rights and visitor policy at the end of life require greater protection during a pandemic. Transparent, coherent, publicly available evidence-based guidelines that key stakeholders, including patients, families and ethicists, are included in producing, are urgently required. We want to avert a legacy of disenfranchised grief in future pandemics.

The experiences of carers in supporting a person living with dementia to participate in virtual cognitive stimulation therapy during the COVID-19 pandemic.

OBJECTIVES: Cognitive stimulation therapy (CST) is an evidence-based group intervention for people with dementia. In response to the COVID-19 pandemic, many existing CST groups moved virtually and this required carers of people living with dementia to assist with setting up the appropriate technology. This study aimed to explore the roles and experiences of carers in accessing virtual CST (vCST). METHODS: This qualitative study used semi-structured individual interviews, via telephone or videoconference, to explore the roles and experiences of carers. Interviews were recorded, transcribed verbatim and thematically analysed. RESULTS: Twelve family carers (age: 51-75 years) reported a range of experiences, from novice to expert knowledge in terms of accessing digital devices (mainly laptops and iPads) and connecting to Zoom. Accessing vCST provided carers an immediate application of new knowledge. Carers reported positive responses to vCST that provided their family member living with dementia with social contact and cognitive stimulation during lockdown. CONCLUSION: Accessing vCST required carers to have an existing adequate level of technological competence in order to learn and use the Zoom platform. Adult learning principles can be used to improve carers' digital literacy required for vCST and other telehealth initiatives.

Health equity and wellbeing among older people's caregivers in New Zealand during COVID-19: Protocol for a qualitative study.

BACKGROUND: Knowledge of the challenges unpaid caregivers faced providing care to older people during the COVID-19 pandemic is limited. Challenges may be especially pronounced for those experiencing inequitable access to health and social care. This participatory action research study, located in New Zealand, has four main objectives, (i) to understand the challenges and rewards associated with caregiving to older care recipients during the COVID-19 pandemic restrictions; (ii) to map and collate resources developed (or mobilised) by organisations during the pandemic; (iii) to co-produce policy recommendations, identify useful caregiver resources and practices, prioritise unmet needs (challenges); and, (iv) to use project results in knowledge translation, in order to improve caregivers access to resources, and raise the profile and recognition of caregivers contribution to society. METHODS AND ANALYSIS: Maori, Pacific and rural-dwelling caregivers to 30 older care-recipients, and 30 representatives from organisations supporting caregivers in New Zealand will be interviewed. Combining data from the interviews and caregivers letters (from an archive of older people's pandemic experiences), framework analysis will be used to examine the interrelated systems of the human ecological model and the impact on caregiving experiences during the pandemic. Resources that service providers had created or used for caregivers and older people will be collated and categorised. Through co-production with caregivers and community partners we will produce three short films describing caregivers' pandemic experiences; identify a suite of resources for caregivers to use in future events requiring self-isolation, and in everyday life; and generate ideas to address unresolved issues.

COVID-19 and hospice community palliative care in New Zealand: A qualitative study.

Within the context of an ageing population and the added challenges posed by COVID-19, the need to optimise palliative care management in the community - the setting where a significant proportion of people prefer to die - cannot be underestimated. To date, there has been a dearth of research exploring community palliative care delivery during the pandemic. This study aimed to explore the impact of and response to COVID-19 for hospice community services in Aotearoa/New Zealand. Eighteen structured interviews were conducted (10 February-18 August 2021) with healthcare professionals from sixteen purposively sampled community hospices from New Zealand regions according to the number of COVID-19-positive patients per 100,000 inhabitants (low, medium and high) with oversampling of high prevalence areas. Two overarching themes emerged 'challenges' and 'adaptations'. Each theme had several subthemes related to service delivery in communication, visiting, allied health team collaboration and volunteer services. Adaptations involved adjusting official health advice to the local context, increased use of telehealth, reducing infection risk during in-home visits through triaging of cases, division of the workforce into teams and repurposing volunteers' services. Despite these adaptations, challenges remained, including increased workload pressures for staff and an absence of the human touch for patients and families. Implications for hospice practice and recommendations for future research are discussed. Governments must acknowledge the essential contribution of hospice to the COVID-19 pandemic and ensure that these services are incorporated into the healthcare system response.

When the wheels fall off - Medical students' experiences of interrupted academic progression.

INTRODUCTION: There is limited published research on medical students' perspectives of a significant interruption to their academic progression. This study sought to identify the factors that contribute to difficulties with academic progression and to understand how medical students successfully respond. METHODS: This interpretive phenomenological study reports on the findings from in-depth interviews of 38 final year medical students who had experienced a significant academic interruption. RESULTS: The two superordinate themes were: the factors contributing to the interruption and their experience of the interruption. Factors identified as contributing to the interruption were: workload, learning in medicine, motivation for medicine, isolation, adapting to local culture, health and external factors. Their experience of the interruption focused on stages of working through the process: 'what happened,' 'how it felt,' 'managing the failure,' 'accepting the failure' and 'making some changes.' DISCUSSION: Each factor affected how the participants reacted and responded to the interruption. Regardless of the origins of the interruption, most reacted and responded in a comparable process, albeit with varying timespans. These reactions and responses were in a state of fluctuation. In order to succeed many stated they shifted their motivation from external to internal, in direct response to the interruption, resulting in changed learning behaviours. CONCLUSIONS: The process of working through an interruption to academic progression for students may benefit from a model of interval debriefing, restorative academic and personal development support. Facilitation of this process could enable students to face an interruption constructively rather than as an insurmountable emotionally burdensome barrier. Medical schools could utilise these findings to implement further support strategies to reduce the number of significant academic disruptions.

The views of Aotearoa/New Zealand adults over 60 years regarding the End of Life Choice Act 2019.

This study described the views of older New Zealand adults toward assisted dying and specifically the End of Life Choice Act (2019), an Act making assisted dying legal. An anonymous postal and online survey of 636 adults 60 years and older was conducted. The majority of respondents did not support legalization (85.7%), while 8.8% were in favor (5.5% did not specify a view). Weighted binary logistic regression indicated that the odds of support for legalization were lower in those respondents with a religious affiliation (OR = .020, S.E. = 0.60, p = .00), and there were 2.66 times greater odds in those identifying as male (S.E. = 0.34, p = .005). On the other hand, those respondents under 65 years had increased odds of supporting legalization (OR = 1.89, S.E. = .029, p = .045). Results indicate that most participants were concerned about potential abuses and coercive practices if assisted dying became legally available in New Zealand.

Palliative care delivery in residential aged care: bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention.

BACKGROUND: The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people. METHOD: The experiences of 18 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews. RESULTS: Three themes were important to bereaved families' experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE. CONCLUSION: Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.

Provision of palliative and end-of-life care in New Zealand residential aged care facilities: general practitioners' perspectives.

This exploratory study examined general practitioners' (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. A general inductive approach to the data collected from semi-structured interviews with 17 GPs from 15 different New Zealand general practices was taken. Findings examine: (1) GPs' life experience; (2) the GP relationship with the facilities and provision of end-of-life care; (3) the GP interaction with families of dying residents; and (4) GP relationship with hospice. The nature of the GP relationship with the facility influenced GP involvement in end-of-life care in aged care facilities, with GPs not always able to direct a facility's end-of-life care decisions for specific residents. GP participation in end-of-life care was constrained by GP time availability and the costs to the facilities for that time. GPs reported seldom using hospice services for residents, but did use the reputation (cachet) associated with hospice practices to provide an authoritative buffer for their end-of-life clinical decisions when talking with families and residents. GP training in end-of-life care, especially for those with dementia, was reported as ad hoc and done through informal mentoring between GPs.

What factors predict the confidence of palliative care delivery in long-term care staff? A mixed-methods study.

BACKGROUND: Research has indicated that clinical staff in long-term care often lack self-confidence in palliative care delivery, particularly at the end of life. GOALS: (a) To examine the contribution of age, palliative care education, palliative care work-related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long-term care staff. DESIGN: Explanatory sequential design. SETTING: Twenty long-term care facilities in two district health boards in New Zealand. PARTICIPANTS: Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life. METHODS: Phase 1: Cross-sectional survey. Phase 2: Individual semi-structured interviews. RESULTS: Phase 1: Previous experience (ß = .319) and psychological empowerment (ß = .311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education. CONCLUSION: Organisational leadership should use multiple strategies (e.g. power-sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence. IMPLICATIONS FOR PRACTICE: This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long-term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life.

Nursing students and health literacy: The effect of region and programme level.

Low levels of health literacy have been associated with poor health outcomes. If an organisation does not have a health literate workforce, it cannot be expected to create a healthcare service that supports the development of health literacy among its users. The aim of this cross-sectional study was to determine the health literacy profiles of undergraduate student nurses over year groups and between regions. The collaborative study employed an anonymous online survey using the Health Literacy Questionnaire which investigated the health literacy profiles of 845 undergraduate student nurses from eight universities in four regions from mid-2014 to early 2016 with co-investigators in each of the universities. Results show specific significant changes in health literacy profiles as a function of year level across the four regions; for example, in the Ability to find good health information. Different regions have different health literacy profiles; however, all could be improved. The results from this study provide specific direction to educators on what student health literacy may look like upon graduation as well as challenge current assumptions. Graduating nurse professionals have a role in mediating and sponsoring a health literate health system as well as being part of supporting patients' health literacy.

Palliative care nurse specialists' reflections on a palliative care educational intervention in long-term care: an inductive content analysis.

BACKGROUND: Older people in long-term care facilities are at a greater risk of receiving care at the end of life that does not adequately meet their needs, yet staff in long-term care are often unprepared to provide palliative care. The objective of the study was to explore palliative care nurse specialists' experiences regarding the benefits of and barriers to the implementation of a palliative care educational intervention, Supportive Hospice Aged Residential Exchange (SHARE) in 20 long-term care facilities. METHODS: Reflective logs (465), recorded over the course of the yearlong SHARE intervention by the three palliative care nurse specialists from two local hospices, who were the on-site mentors, were qualitatively analyzed by two researchers utilizing inductive content analysis. RESULTS: Categories emerging from the logs include the importance of relationships, knowledge exchange, communication, and the challenges of providing palliative care in a long-term care setting. CONCLUSION: Evidence from the logs indicated that sustained relationships between the palliative care nurse specialists and staff (registered nurses, healthcare assistants) as well as reciprocal learning were key factors supporting the implementation of this palliative care educational intervention. Challenges remain however in relation to staffing levels, which further emphasizes the importance of palliative care nurse specialist presence as a point of stability.

End of life care for long-term care residents with dementia, chronic illness and cancer: prospective staff survey.

BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness. METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident's death. RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer. CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.

Patient-centred care training needs of health care assistants who provide care for people with dementia.

It is well documented that Health care assistants (HCAs) provide the most hands-on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person-centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end-of-life, identifies the skills required for their work and examines the education provided against these skills. Semi-structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person-centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de-escalation skills, both verbal and non-verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.

The Effect of Residential Aged Care Size, Ownership Model, and Multichain Affiliation on Resident Comfort and Symptom Management at the End of Life.

CONTEXT: In most resource-rich countries, a large and growing proportion of older adults with complex needs will die while in a residential aged care (RAC) facility. OBJECTIVES: This study describes the impact of facility size (small/large), ownership model (profit/nonprofit) and provider (independent/chain) on resident comfort, and symptom management as reported by RAC staff. METHODS: This retrospective "after-death" study collected decedent resident data from a subsample of 51 hospital-level RAC facilities in New Zealand. Symptom Management at the End-of-Life in Dementia and Comfort Assessment in Dying at End of life with Dementia (SM-EOLD and CAD-EOLD, respectively) scales were used by RAC staff who were closely associated with 217 deceased residents. Data collection occurred from January 2016 to February 2017. RESULTS: Results indicated that residents of large, nonprofit facilities experienced greater comfort at the end of life (CAD-EOLD) as indicated by a higher mean score of 37.21 (SD = 4.85, 95% CI = 34.4, 40.0) than residents of small for-profit facilities who recorded a lower mean score of 31.56 (SD = 6.20, 95% CI = 29.6, 33.4). There was also evidence of better symptom management for residents of chain facilities, with a higher mean score for symptom management (SM-EOLD total score) recorded for residents of chain facilities (mean = 28.07, SD = 7.64, 95% CI = 26.47, 29.66) than the mean score for independent facilities (mean = 23.93, SD = 8.72, 95% CI = 21.65, 26.20). CONCLUSION: Findings suggest that there are differences in the quality of end-of-life care given in RAC based on size, ownership model, and chain affiliation.