Family Caregivers and Palliative Care: Current Status and Agenda for the Future

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.

Nursing care of the family before and after a death in the ICU - an exploratory pilot study

This qualitative descriptive study was undertaken in two metropolitan ICUs utilising focus groups to describe the ways in which ICU nurses care for the families of dying patients during and after the death. Participants shared their perspectives on how they care for families, their concerns about care, and detailed the strategies they use to provide timely and person-centred family care. Participants identified that their ICU training was inadequate in equipping them to address the complex care needs of families leading up to and following patient deaths, and they relied on peer mentoring and role-modelling to improve their care. Organisational constraints, practices and pressures impacting on the nurse made ‘ideal’ family care difficult. They also identified that a lack of access to pastoral care and social work after hours contributed to their concerns about family care. Participants reported that they valued the time nurses spent with families, and the importance of ensuring families spent time with the patient, before and after death.

Person centred nursing care in radiation oncology : a case study

Purpose The aim of this case study is to describe clinical staff perceptions of implementing a person-centred model of nursing in an outpatient radiotherapy treatment department, using a Primary Nursing/Collaborative Practice framework. The questions are: 1) what are the nursing and radiotherapy staff perspectives of the changed model of care, 2) what factors impacted on aspects of the evolving model?, and 3) how was interdisciplinary collaboration influenced by the new model? Methods An instrumental case study addressed the multiple perspectives of several radiotherapy health professionals, within a qualitative approach, to assess the new model of nursing care. Interview data were obtained from thirteen clinical staff over a six month period approximately one year after the model was implemented. Results The new model supports nurses to work more closely with the individual patient, with some perceived positive patient outcomes. Nurses reported increased satisfaction with their work, more autonomy and responsibility, and improved working relationships with medical staff. They also became more aware of the holistic approach to support positive patient outcomes. However, this study acknowledged that education was required for nurses to provide holistic care, especially in the context of complex interdisciplinary relationships. Conclusions A person-centred nursing approach in radiotherapy represents a radical change to the functional approach, providing some benefits for patients. However, the challenges of providing holistic care in the context of complex interdisciplinary relationships are evident, and this study acknowledges the importance of a team approach to addressing changes in practice in the future.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Patients' outcomes related to person-centred nursing care in radiation oncology: A case study

Abstract Purpose The aim of this case study is to describe patients' responses to nursing care following the implementation of a person-centred model in a radiation oncology department. Method An instrumental case study design utilised surveys to collect data on a range of key patient outcomes: patient satisfaction (PSS), informational issues (RSEP), quality of life (FACT_G), comfort (RTCQ), and emotional status (HADS). This occurred at the beginning of, and twelve months following, the implementation of the new model of care. Results This study demonstrated that, although adverse effects of radiotherapy continue to affect patient well-being in the latter part of their course of radiation therapy, patients continue to be satisfied with nursing care. There were significant differences between groups in perceptions of the care environment and the use of the nurse as an acknowledged source of information are noteworthy, since these variables were key targets of the new model of care. The finding that nurses were seen by the post-implementation cohort as more likely to be a source of information is an important indicator that the nurses' presence was noted by patients, and they generally reported high levels of functioning despite undergoing a curative course of radiotherapy. Conclusion The person-centred nursing approach in the radiotherapy setting has contributed to some improvements in the provision of patient care. Aspects of this study may assist in planning further nursing interventions for patients undergoing radiotherapy for cancer, and continue to enhance the contribution of the radiation oncology nurse to improved patient outcomes.

End-of-life care practices of critical care nurses: A national cross-sectional survey

Background: The critical care context presents important opportunities for nurses to deliver skilled, comprehensive care to patients at the end of life and their families. Limited research has identified the actual end-of-life care practices of critical care nurses. Objective: To identify the end-of-life care practices of critical care nurses. Design: A national cross-sectional online survey. Methods: The survey was distributed to members of an Australian critical care nursing association and 392 critical care nurses (response rate 25%) completed the survey. Exploratory factor analysis using principal axis factoring with oblique rotation was undertaken on survey responses to identify the domains of end-of-life care practice. Descriptive statistics were calculated for individual survey items. Results: Exploratory factor analysis identified six domains of end-of-life care practice: information sharing, environmental modification, emotional support, patient and family centred decision-making, symptom management and spiritual support. Descriptive statistics identified a high level of engagement in information sharing and environmental modification practices and less frequent engagement in items from the emotional support and symptom management practice areas. Conclusions: The findings of this study identified domains of end-of-life care practice, and critical care nurse engagement in these practices. The findings highlight future training and practice development opportunities, including the need for experiential learning targeting the emotional support practice domain. Further research is needed to enhance knowledge of symptom management practices during the provision of end-of-life care to inform and improve practice in this area.

Modelling end-of-life care practices: Factors associated with critical care nurse engagement in care provision

Objective To identify factors associated with critical care nurses’ engagement in end-of-life care practices. Methods Multivariable regression modelling was undertaken on 392 responses to an online self-report survey of end-of-life care practices and factors influencing practice by Australian critical care nurses’. Univariate general linear models were built for six end-of-life care practice areas. Results Six statistically significant (p < 0.001) models were developed: Information sharing F(3, 377) = 40.53, adjusted R2 23.8%; Environmental modification F(5, 380) = 19.55, adjusted R2 19.4%; Emotional support F(10, 366) = 12.10, adjusted R2 22.8%; Patient and family centred decision making F(8, 362) = 17.61 adjusted R2 26.4%; Symptom management F(8, 376) = 7.10, adjusted R2 11.3%; and Spiritual support F(9, 367) = 14.66, adjusted R2 24.6%. Stronger agreement with values consistent with a palliative approach, and greater support for patient and family preferences were associated with higher levels of engagement in end-of-life care practices. Higher levels of preparedness and access to opportunities for knowledge acquisition were associated with engagement in the interpersonal practices of patient and family centred decision making and emotional support. Conclusion This study provides evidence for interventions to address factors associated with nurse engagement to increase participation in all end-of-life care practice areas.

Home-based support for palliative care families:challenges and recommendations

Providing adequate supportive services for the families of palliative care patients is a core principle of palliative care. Caring for a patient with terminal illness at home involves a considerable commitment on the part of family caregivers, and attention must be given to the caregiver's needs as well as those of the patient. Although a home death may be preferred by patients and promoted by healthcare agencies as a cost-effective option, it may be an ideal that is not often realised. Enhanced supportive care strategies can ameliorate the challenges facing families of palliative care patients cared for at home. All health professionals need to improve the standard of family-centred palliative care, and more evidence-based approaches are required.

Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Partnerships in early childhood education and care : empowering parents or empowering practitioners

Research acknowledges that outcomes for young children are enhanced when effective partnerships are developed between educators and families. The Australian Early Years Learning Framework provides direction for the professional practice of early childhood educators by acknowledging the importance of educators working in partnership with families. In the Victorian state-based early years framework, family-centred practice has been included as the practice model. Family-centred practice has as its core a philosophy of professionals supporting the empowerment of parents as active decision makers for their child. The early childhood education and care sector in Australia, however, is made up of a workforce which is largely perceived as being undervalued as a profession. This raises questions as to the capacity of these educators to support the empowerment of parents when they themselves are coming from a position of disempowerment due to their professional status. This article reports on findings from a small-scale study of childhood educators working in a long day-care setting which aimed to identify perceptions of the partnerships that exist between themselves and parents. In the course of the investigation, it became evident that some of educators felt disempowered in the relationships that exist with some families.

Review of nursing care for patients undergoing percutaneous coronary intervention: a patient journey approach

Aim.  To evaluate the existing literature to inform nursing management of people undergoing percutaneous coronary intervention. Background.  Percutaneous coronary intervention is an increasingly important revascularisation strategy in coronary heart disease management and can be an emergent, planned or rescue procedure. Nurses play a critical role in delivering care in both the independent and collaborative contexts of percutaneous coronary intervention management. Design.  Systematic review. Method.  The method of an integrative literature review, using the conceptual framework of the patient journey, was used to describe existing evidence and to determine important areas for future research. The electronic data bases CINAHL, Medline, Cochrane and the Joanna Briggs data bases were searched using terms including: (angioplasty, transulminal, percutaneous coronary), nursing care, postprocedure complications (haemorrhage, ecchymosis, haematoma), rehabilitation, emergency medical services (transportation of patients, triage). Results.  Despite the frequency of the procedure, there are limited data to inform nursing care for people undergoing percutaneous coronary intervention. Currently, there are no widely accessible nursing practice guidelines focusing on the nursing management in percutaneous coronary intervention. Findings of the review were summarised under the headings: Symptom recognition; Treatment decision; Peri-percutaneous coronary intervention care, describing the acute management and Postpercutaneous coronary intervention management identifying the discharge planning and secondary prevention phase. Conclusions.  Cardiovascular nurses need to engage in developing evidence to support guideline development. Developing consensus on nurse sensitive patient outcome indicators may enable benchmarking strategies and inform clinical trial design. Relevance to clinical practice.  To improve the care given to individuals undergoing percutaneous coronary intervention, it is important to base practice on high-level evidence. Where this is lacking, clinicians need to arrive at a consensus as to appropriate standards of practice while also engaging in developing evidence. This must be considered, however, from the central perspective of the patient and their family.

Moving from reclusion to partial freedom: the experience of family caregivers for disabled elderly persons assisted in a day care center

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

[Experiences of patients and family members during the stay on a nursing unit]

In 2004, the university hospital of Berne ran a pilot project with a Nursing Unit (NU). In this unit patients who no longer needed a close surveillance by physicians were cared for. They needed primarily complex professional nursing care which could not be provided by other hospitals, nursing homes, home care or family members. The nurses were responsible for the coordination of care. This qualitative study investigated experiences of patients and family members with the care concept of the NU. Thematically focused interviews were conducted with nine patients and five family members. Qualitative content analysis was used for data analysis. Results show that patients and family members mostly accepted the new care concept. They positively experienced the quiet and restful atmosphere, the patient-centred and continuous care by competent nurses, the education and the discharge planning. Some study participants reported missing information at the time of their transfer to the NU, insufficient assessments or unsuitable educational scripts. The study provides evidence to positive effects of a patient-centred care approach.

Employers and child care : benefiting work and family.

Mode of access: Internet.