Older people's views on loneliness during COVID-19 lockdowns.

BACKGROUND AND OBJECTIVES: There have been growing concerns that social distancing and stay-at-home mandates have exacerbated loneliness for older people. Empirical evidence about older people's experiences of loneliness and COVID-19 have quantified this phenomena without considering how older people themselves define and understand loneliness. This paper explores how older New Zealanders conceptualized and experienced loneliness under 'lockdown' stay-at-home measures. METHODS: This multi-methods qualitative study combines data from letters (n = 870) and interviews (n = 44) collected from 914 people aged over 60 and living in Aotearoa, New Zealand during the COVID-19 pandemic. We conducted a reflexive thematic analysis to conceptualise this data. FINDINGS: We identify three interconnected ways in which older people conceptualised and experienced loneliness: (1) feeling disconnected relating to lack of emotional closeness to another often resulting from being physically separated from others and not being able to touch; (2) feeling imprisoned relating to separation from preferred identities and activities and was frequently associated with boredom and frustration; and (3) feeling neglected which often related to feeling let down by generalised and idealised forms of support, such as one's neighbourhood and health care system. DISCUSSION: Older New Zealanders experienced lockdown loneliness in three interconnected ways rather than as a stable and homogenous experience. Maori, Pacific, Asian and New Zealand European older people often discussed loneliness in different ways; attesting to loneliness being a culturally-mediated concept shaped by expectations around desirable social interaction. We conclude the paper with implications for research and policy.

The work of palliative care from the perspectives of district nurses: A qualitative study.

AIM: To explore the work of palliative care from the perspectives of district nurses with a focus on the strategies they use to achieve positive outcomes for patients. DESIGN: An exploratory descriptive qualitative study. METHODS: A combination of group and individual interviews using semi-structured interviewing were used to explore district nurses' views of providing palliative care across two large urban community nursing services. RESULTS: Sixteen district nurse participants were interviewed. Three key themes were identified: "Getting what was needed" involved finding solutions, selling a story and establishing relationships. District nurses sought ways to "Stay involved" recognizing the benefit of delaying discharge for some patients. "Completing a nursing task" was a way of managing time constraints and a form of self-protection from having difficult conversations. CONCLUSION: This study highlights the importance of understanding the contextual nature of the practice setting in relation to the provision of palliative care. In doing so, it has revealed the strategies district nurses use to overcome the challenges associated with providing palliative care within a generalist workload. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: District nurses experience a tension between managing high patient workloads and remaining patient centred in palliative care. Being task focused is a way of remaining safe while managing a high volume of work and is not always a negative factor in the care they provide. However, focusing on a task while at the same time addressing other unmet needs requires a set of skills that less experienced nurses may not have. IMPACT: Palliative care education alone will not improve the quality of palliative care provided by generalist community district nurses. The practice context is an important factor to take into consideration when supporting the integration of palliative care in district nursing. NO PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was made to this study. REPORTING METHOD: We have adhered to the relevant EQUATOR guidelines and used the COREQ reporting method.

Employment and family caregiving in palliative care: An international qualitative study.

BACKGROUND: Family caregivers provide the majority of palliative care. The impact of family caregiving on employment and finances has received little research attention in the field of palliative care. AIM: The aim of this study was to explore perspectives and experiences of combining paid employment with palliative care family caregiving, and to assess the availability and suitability of employment support across three countries - the United Kingdom (UK), Aotearoa New Zealand and Canada. DESIGN: A qualitative descriptive study design was used. Semi-structured interviews were held with 30 key informants with professional or personal experience in palliative care from the UK (n = 15), Aotearoa New Zealand (n = 6) and Canada (n = 9). Interviews were recorded, transcribed and analysed using the principles of thematic analysis. RESULTS: Four main themes were identified: (1) significant changes to working practices are required to enable end of life family carers to remain in work; (2) the negative consequences of combining caregiving and employment are significant, for both patient and carer; (3) employer support for working end of life caregivers is crucial but variable and; (4) national, federal and government benefits for working end of life family carers are necessary. CONCLUSION: Supporting carers to retain employment whilst providing care has potential benefits for the patient at end of life, the caregiver, and the wider economy and labour market. Employers, policymakers and governments have a role to play in developing and implementing policies to support working carers to remain in employment.

'Mum, I think we might ring the ambulance, okay?' A qualitative exploration of bereaved family members' experiences of emergency ambulance care at the end of life.

BACKGROUND: In the context of a sudden or unexpected event, people with a life-limiting illness and their family caregivers may be dependent on emergency ambulance services. AIM: To explore bereaved family members' experiences of emergency ambulance care at the end of life. DESIGN: A qualitative study using reflexive thematic analysis of data collected from semi-structured phone interviews. SETTING/PARTICIPANTS: A purposive sample of 38 family caregivers identified from a database of deaths in Aotearoa, New Zealand. RESULTS: Emergency ambulance personnel assist, inform and reassure patients and family caregivers managing distressing symptoms, falls, infections, unexpected events and death itself. Family members and patients are aware of the pressure on emergency services and sometimes hesitate to call an ambulance. Associating ambulances with unwanted transport to hospital is also a source of reluctance. CONCLUSIONS: The generalist palliative care provided by emergency ambulance personnel is a vital service for patients in the last year of life, and their caregivers. This must be acknowledged in palliative care policy and supported with training, specialist consultation and adequate resources.

A task service and a talking service: A qualitative exploration of bereaved family perceptions of community nursing care at the end of life.

BACKGROUND: Greater emphasis on community-based care at the end of life is supported by the premise that most people want to be cared for and die at home. As such, it is important to understand the current state of palliative care nursing within an integrated generalist-specialist model of care in the community. AIM: To explore bereaved family perceptions and experiences of community nursing at the end of life, with a particular focus on service integration. DESIGN: A qualitative study design using semi-structured telephone interviews with bereaved family. A critical realist framework was used to inform the analysis of interview data and thematic analysis of data was used to identify key themes. SETTING/PARTICIPANTS: Participants were the family carers of patients who had died within the catchment area of two large District Health Boards in Auckland, New Zealand. RESULTS: Twenty-three participants were interviewed. Participants described their experiences of community nursing in terms of the service they provided. Hospice nursing roles were described in terms of a "talking service" and District Nursing as a "task service." There was minimal expectation of the general practice nurse in terms of palliative care support and little evidence of service integration. CONCLUSION: Findings from this study support the need for a new integrated model of palliative care nursing which utilizes the unique skill set of nurses working across all community care settings including general practice, hospice and district nursing services. Accommodating different models of nursing care which can be responsive to patient need rather than limited to a defined service delivery model.

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data.

BACKGROUND: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. METHODS: Thematic analysis of free text collected during a postal survey of bereaved family's experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of "scientific uncertainty". RESULTS: Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. CONCLUSIONS: This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.