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1.
J Adv Nurs ; 80(8): 3323-3332, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38108192

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Palliative Care , Qualitative Research , Humans , Palliative Care/psychology , Female , Adult , Male , Middle Aged
2.
Int Nurs Rev ; 2023 Nov 17.
Article in English | MEDLINE | ID: mdl-37975578

ABSTRACT

AIM: To identify strategies which support the implementation of interventions to promote compassionate nursing care with a focus on interventions designed to support improved patient outcomes and/or patient experience in acute hospitals. METHODS: An integrative review using the PRISMA guidelines and a 5-stage framework consisting of problem identification, literature search, data evaluation, data analysis and presentation. CINAHL, Embase, Medline, PsychInfo and Web of Science were systematically searched using key search terms. Hand searches were conducted of the reference lists of eligible articles and searching key journals. RESULTS: Six articles met the inclusion criteria with six different interventions described. A thematic analysis of the findings identified three key themes relating to the implementation of interventions which promote compassionate nursing care: (1) the importance of evidence; (2) support for nursing development; and (3) planning for and leading implementation. CONCLUSION: Compassionate care improves quality of life, the hospital experience and overall recovery. Strong nursing leadership and a supportive team environment are facilitators for delivery of compassionate care in acute settings. Excessive workload, overly rigid reporting and organisational indifference are barriers to delivery of compassionate care. IMPLICATIONS FOR NURSING POLICY: Health policy is used to inform the systematic implementation and delivery of patient care informed by best evidence. Health setting, environment and culture are important facets of the implementation of a compassionate care framework. Furthermore, nurse engagement, teamwork and nurse leadership are key facilitators for delivery of compassionate care in acute hospital settings. These findings need to be taken into consideration by policy makers and nursing leaders when designing and implementing compassionate care interventions. IMPLICATIONS FOR NURSING POLICY: Implementing interventions to improve compassionate nursing care can be challenging. This review identified the factors which should be considered by policy makers when implementing these interventions systematically throughout the healthcare system.

3.
Palliat Care Soc Pract ; 17: 26323524231189525, 2023.
Article in English | MEDLINE | ID: mdl-37584059

ABSTRACT

Background: There have been international concerns raised that, during the COVID-19 pandemic, there was an absence of good palliative care resulting in poor end-of-life care experiences. To date, there have been few studies considering the pandemic's impact on people dying from non-COVID-19 causes and their families and friends. In particular, there has been very less empirical research in relation to end-of-life care for Indigenous, migrant and minoritised ethnic communities. Objectives: To explore bereaved next-of-kin's views and experiences of end-of-life care under COVID-19 pandemic regulations. Design: This qualitative study involved in-depth one-off interviews with 30 ethnically diverse next-of-kin who had a family member die in the first year of the pandemic in Aotearoa, New Zealand. Methods: Interviews were conducted by ethnically matched interviewers/interviewees. A reflexive thematic analysis was used to explore and conceptualise their accounts. Results: A key finding was that dying alone and contracting COVID-19 were seen as equally significant risks by bereaved families. Through this analysis, we identified five key themes: (1) compromised connection; (2) uncertain communication; (3) cultural safety; (4) supported grieving and (5) silver linings. Conclusion: This article emphasises the importance of enabling safe and supported access for family/whanau to be with their family/wha-nau member at end-of-life. We identify a need for wider provision of bereavement support. We recommend that policy makers increase resourcing of palliative care services to ensure that patients and their families receive high-quality end-of-life care, both during and post this pandemic. Policy makers could also promote a culturally-diverse end-of-life care work force and the embedding of culturally-safety practices across a range of institutions where people die.

4.
Palliat Med ; 37(7): 975-983, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37129344

ABSTRACT

BACKGROUND: Despite the reported importance of rapport, there are knowledge gaps in the ways rapport is developed and experienced by health professionals during telehealth calls in palliative care. AIM: To gain an understanding about developing rapport during telehealth calls by exploring the experiences of health professionals in community palliative care. DESIGN: A qualitative Interpretive Description study was conducted with semi-structured interviews and focus groups between November 2020 and May 2021. Data was audio recorded, transcribed, and analysed using Reflexive thematic analysis. A COREQ checklist was completed. SETTING/PARTICIPANTS: Thirty-one palliative care professionals who had participated in telehealth calls were recruited from four hospice locations in Aotearoa, New Zealand. RESULTS: There were two themes identified: (1) 'Getting on together', which included how rapport shows up in telehealth, with examples of calls with rapport and without rapport, and (2) 'Rapport is a soft skill', which identified health professionals using body language and listening in specific ways in telehealth, while being aware of the privacy of calls, and lack of training concerns. CONCLUSION: Based on health professionals experiences of rapport it was determined that rapport is vitally important in telehealth calls, as it is in-person interactions. Rapport is a soft skill that can potentially be learned, practiced and mastery developed, although rapport in each interaction is not guaranteed. Patient and family experiences of rapport in the palliative telehealth area warrants further research and there is some urgency for health professional training in telehealth interpersonal skills.


Subject(s)
Hospice Care , Telemedicine , Humans , Palliative Care , Health Personnel , Qualitative Research
5.
Int J Palliat Nurs ; 29(2): 75-82, 2023 Feb 02.
Article in English | MEDLINE | ID: mdl-36822619

ABSTRACT

Background: There is a paucity of evidence regarding the contribution of generalist community nursing to palliative care. Aim: The aim of this study was to identity the proportion of patients referred to a generalist community nursing service who meet the criteria for palliative care need and explore key aspects of their management. Methods: A retrospective case note review of people known to a generalist community nursing service was undertaken to identify people with palliative care needs. Results: Of the 1284 people enrolled in the community nursing service, 21.1% (n=271) were identified as having palliative care needs, of which most (82.7%; n=224) had a non-cancer illness. However, palliative care need was largely unrecognised in the referrals to community nursing and there was little evidence of a palliative approach being integrated into nursing care. Conclusions: Nursing has a significant role in the provision of generalist palliative care in the community. However, research is needed to identify the barriers community nurses experience identifying needs and providing palliative care. A focus on education and support in implementing screening tools, which may assist community nurses in recognising needs and delivering palliative in the generalist setting, is urgently needed.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Humans , Retrospective Studies
6.
Patient Educ Couns ; 106: 120-127, 2023 01.
Article in English | MEDLINE | ID: mdl-36328826

ABSTRACT

OBJECTIVE: To explore patient and family perceptions of rapport in interactions with health professionals and use the findings to develop a conceptual definition of rapport. METHODOLOGY: We undertook a qualitative Interpretive Description study; semi-structured interviews were conducted between November 2020 and May 2021. Participants included 18 patients and 11 family members recruited using a random approach from four hospice locations in Aotearoa, New Zealand. Interviews were audio recorded, transcribed, and analysed to develop a conceptual definition of rapport using guidelines (Podsakoff et al., (2016). A COREQ checklist was completed. RESULTS: Four dimensions of rapport were identified which formed the basis of a conceptual definition: 1) the type of relating, 2) the essence of rapport experienced, 3) key communication characteristics, and 4) the effect on interactions. CONCLUSION: Based on patient and family experiences of rapport, this study formulated a conceptual definition of rapport. This definition will support clinical education and practice and inform future research related to rapport. PRACTICE IMPLICATIONS: A conceptual definition of rapport can provide clarity for both research and clinical practice. It may be used as a tool for health professionals to reflect upon their experiences with rapport and develop expertise in this area.


Subject(s)
Hospice Care , Hospice and Palliative Care Nursing , Humans , Palliative Care/methods , Family , Qualitative Research
7.
Palliat Med ; 36(10): 1522-1531, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36267044

ABSTRACT

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.


Subject(s)
Hospice Care , Nursing Care , Humans , Palliative Care , Caregivers , Qualitative Research , Death
8.
Palliat Med ; 36(9): 1389-1395, 2022 10.
Article in English | MEDLINE | ID: mdl-36154525

ABSTRACT

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.


Subject(s)
Ambulances , Emergency Medical Services , Humans , Family , Palliative Care , Qualitative Research , Death
9.
Palliat Med ; 36(6): 986-993, 2022 06.
Article in English | MEDLINE | ID: mdl-35848213

ABSTRACT

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.


Subject(s)
Caregivers , Palliative Care , Death , Employment , Family , Humans , Qualitative Research
10.
Nurse Res ; 30(2): 30-35, 2022 Jun 07.
Article in English | MEDLINE | ID: mdl-35642591

ABSTRACT

BACKGROUND: Reflexivity is an invaluable skill for nurses and researchers, as it assists in closing the gap between research and practice and improves nursing practice. However, there is some doubt about how well reflexivity is implemented in nursing. There has also been little published showing how reflexivity can be applied in research and nursing. AIM: To provide an example of reflexivity in research to demonstrate that knowledge and experiences are transferable to nursing practice. DISCUSSION: Reflexivity is an important tool for research and nursing in finding the meeting points or interface of research and practice. This article provides an example of being reflexive that identified how the research skills of 'listening to understand' and 'finding meaning' filtered into nursing practice. CONCLUSION: Reflexivity helped to generate knowledge about research skills filtering across a research project into clinical practice. Being reflexive as a researcher and a nurse can transform the care of patients and families. IMPLICATIONS FOR PRACTICE: This article provides an example of how reflexivity can be applied to research and nursing practice. It also suggests reframing the gap between research and practice as an interface between the two. This could encourage nurses to think of research skills and knowledge as transferable into real-time nursing practice.


Subject(s)
Research Design , Research Personnel , Humans
11.
Health Soc Care Community ; 30(1): 133-141, 2022 01.
Article in English | MEDLINE | ID: mdl-33894085

ABSTRACT

A generalist-specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers-Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that "generalists" are willing and able to play a key role in palliative care provision needs to be further challenged.


Subject(s)
Hospice Care , Terminal Care , Caregivers , Cross-Sectional Studies , Humans , New Zealand , Palliative Care
12.
Support Care Cancer ; 30(2): 1823-1830, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34608533

ABSTRACT

OBJECTIVE: To explore lung cancer patient's experiences of telehealth during COVID-19 restrictions. METHODS: Thirty patients with lung cancer were recruited. Data was collected using a qualitative exploratory design with semi-structured interviews. Transcripts were thematically coded using NVivo software. RESULTS: Five key themes were identified: maintaining resilience, participants acknowledged that they were self-reliant prior to their diagnosis and that the sense of their own internal capabilities was a source of comfort for them; importance of pre-established relationships with healthcare professionals, the sense of connection established prior to the telehealth consultation supported participants to engage with healthcare professionals where the need for connectedness was amplified by a sense of isolation; seeking help, participants sought help from services that they perceived as being "expert"; convenience, factors such as costs and saving time were highlighted; and preferences for consultation type, majority of participants identified physical and emotional comfort being in their own space. For a small number of patients, continuing a face-to-face assessment was important due to expectation based on previous experience. CONCLUSION: The use of telehealth was supported during the management of COVID-19. Connectedness and convenience were key to the level of comfort and confidence for patients with lung cancer using telehealth during "lockdown."


Subject(s)
COVID-19 , Lung Neoplasms , Telemedicine , Communicable Disease Control , Humans , Lung Neoplasms/therapy , SARS-CoV-2
13.
Patient Educ Couns ; 105(1): 2-14, 2022 01.
Article in English | MEDLINE | ID: mdl-34154861

ABSTRACT

OBJECTIVE: Rapport is considered fundamental to clinical relationships but is a concept which is rarely defined. This review explores how rapport is defined, characterised, and operationalised in healthcare. METHODS: A scoping review methodology was used. Data were synthesised using thematic analysis. The review process adhered to the Preferred Reporting System for Meta-Analysis for Scoping reviews (PRISMA-ScR). RESULTS: Medline, CINAHL, and psychINFO were searched with thirty-four studies meeting inclusion criteria. Results were presented in two themes: The meanings of rapport and the implications for building rapport. CONCLUSIONS: This scoping review found rapport has no commonly shared definition or conceptualisation in the reviewed research. At the same time rapport is operationalised and characterised. Factors that facilitate, and hinder rapport-building were identified. Having a consistently used definition and conceptualisation will benefit the research that is needed into patient and family experiences and outcomes of rapport. PRACTICE IMPLICATIONS: It is crucial for health professionals to incorporate simple kind gestures into practice to facilitate rapport. Equally it is necessary for health professionals to review their practice for dismissive, avoiding behaviours that impede rapport-building and consider how they spend their time with patients.


Subject(s)
Delivery of Health Care , Health Personnel , Humans
14.
BMC Palliat Care ; 20(1): 60, 2021 Apr 13.
Article in English | MEDLINE | ID: mdl-33849502

ABSTRACT

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.


Subject(s)
Bereavement , Terminal Care , Death , Family , Humans , Palliative Care , Surveys and Questionnaires , Uncertainty
15.
Australas J Ageing ; 40(1): e22-e28, 2021 Mar.
Article in English | MEDLINE | ID: mdl-33739596

ABSTRACT

OBJECTIVES: To explore how interRAI assessments could be used to identify opportunities to integrate palliative care into a plan of care. METHODS: A population-based, cross-sectional design using unique identifiers to link deaths with a national interRAI database. Data were analysed using logistic regression models and chi-square tests. RESULTS: A total of 4869 people died over a 12-month period in one district health board area; 50.9% (n = 2478) received one or more interRAI assessments in the year before death. Diagnosis impacted on the type and timing of interRAI assessments and the recognition of end-stage disease. CONCLUSION: People in the last year of life experience frequent interRAI assessments. There are opportunities to identify people who might benefit from a palliative care approach. Future research is needed to understand how interRAI assessors can be supported in the application of assessment items related to palliative care.


Subject(s)
Palliative Care , Cross-Sectional Studies , Forecasting , Humans , Logistic Models
16.
BMC Palliat Care ; 19(1): 127, 2020 Aug 17.
Article in English | MEDLINE | ID: mdl-32807170

ABSTRACT

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.


Subject(s)
Family/psychology , Palliative Care/standards , Residential Facilities/standards , Adult , Aged , Aged, 80 and over , Attitude of Health Personnel , Female , Humans , Male , Middle Aged , New Zealand , Palliative Care/psychology , Palliative Care/statistics & numerical data , Patient Satisfaction , Professional-Family Relations , Qualitative Research , Residential Facilities/organization & administration , Residential Facilities/statistics & numerical data
17.
Health Soc Care Community ; 28(6): 2320-2330, 2020 11.
Article in English | MEDLINE | ID: mdl-32567196

ABSTRACT

In New Zealand, as in other industrialised societies, an ageing population has led to an increased need for palliative care services. A cross-sectional postal survey of bereaved carers was conducted in order to describe both bereaved carer experience of existing services in the last 3 months of life, and to identify factors associated with overall satisfaction with care. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services (VOICES) instrument was sent to 4,778 bereaved carers for registered deceased adult (>18yrs) patients in one district health board (DHB) for the period between November 2015 and December 2016. Eight hundred and twenty-six completed questionnaires were returned (response rate = 21%). The majority of respondents (83.8%) rated their overall satisfaction with care (taking all care during the last 3 months into account), as high. However, satisfaction varied by care setting. Overall satisfaction with care in hospice was significantly higher compared to other settings. Additionally, patients who died in hospice were more likely to be diagnosed with cancer and under 65 years of age. The factors associated with overall satisfaction with care in the last 2 days of life were: caregiver perceptions of treatment with dignity and respect; adequate privacy; sufficient pain relief and decisions in line with the patient's wishes. A more in-depth exploration is required to understand the quality of, and satisfaction with, care in different settings as well as the factors that contribute to high/low satisfaction with care at the end-of-life.


Subject(s)
Caregivers/psychology , Palliative Care/psychology , Personal Satisfaction , Terminal Care/psychology , Adult , Aged , Bereavement , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Neoplasms/psychology , New Zealand , Pain Management , Surveys and Questionnaires
18.
BMC Palliat Care ; 19(1): 71, 2020 May 19.
Article in English | MEDLINE | ID: mdl-32429888

ABSTRACT

BACKGROUND: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.


Subject(s)
Caregivers/economics , Health Care Costs/standards , Palliative Care/standards , Patient Care/economics , Caregivers/statistics & numerical data , Female , Health Care Costs/statistics & numerical data , Humans , Male , Middle Aged , Palliative Care/economics , Palliative Care/statistics & numerical data , Patient Care/methods
19.
Aust J Prim Health ; 26(2): 124-131, 2020 Apr.
Article in English | MEDLINE | ID: mdl-32053761

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , General Practitioners/psychology , Palliative Care/psychology , Professional-Family Relations , Terminal Care/psychology , Decision Making , Female , Homes for the Aged , Humans , Interviews as Topic , Male , New Zealand
20.
J Clin Nurs ; 29(11-12): 1788-1796, 2020 Jun.
Article in English | MEDLINE | ID: mdl-31495001

ABSTRACT

BACKGROUND: An urgent need to improve palliative care in hospital has been identified. Moreover, service users consistently report care delivered by nurses in hospital as lacking compassion. Compassion is a fundamental component of nursing care, and promoting compassionate care has been identified as a policy priority in many countries. To help address this within the hospital context, we recently completed research exploring bereaved family experiences of good end of life care in hospital. We found that family accounts of good care aligned with Nolan and Dewar's compassionate care framework and subsequently extended the framework to the bi-cultural context of Aotearoa, New Zealand. AIMS AND OBJECTIVES: In this discussion paper, we explore synergies between our newly developed Kapakapa Manawa Framework: a bi-cultural approach to providing compassionate care at the end of life and the Fundamentals of Care. We argue that our framework can be used to support the implementation of the relational component of the Fundamentals of Care and the delivery of compassionate nursing practice in hospitals in Aotearoa, New Zealand. DESIGN: Discussion paper. METHODS: Review of relevant literature and construction of two vignettes describing good end of life care from the perspectives of bereaved family-one Maori and one non-Maori. The vignettes provide practical examples of how the values of the Kapakapa Manawa Framework can be enacted by nurses to provide compassionate care in alignment with the relationship component of the Fundamentals of Care. CONCLUSIONS: Whilst the Kapakapa Manawa bi-cultural compassionate care framework has grown out of research conducted with people nearing the end of their lives, it has the potential to improve nursing care for all hospital inpatients. RELEVANCE TO CLINICAL PRACTICE: Addressing the wider policy and health system factors detailed in the Fundamentals of Care will support its implementation in the clinical setting.


Subject(s)
Culturally Competent Care/standards , Nursing Staff, Hospital/psychology , Terminal Care/standards , Empathy , Female , Humans , Male , Native Hawaiian or Other Pacific Islander , New Zealand , Professional-Family Relations , Terminal Care/psychology
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