Residential aged care: the last frontier for palliative care

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.     

Specialist palliative care: patients' experiences

BACKGROUND: Nursing research generally, and palliative care research in particular, has been criticized for generating numerous small scale, often qualitative and/or evaluative studies, from which it is difficult to draw generalizations. AIMS: Our aim in this study was to conduct a synthesis of three evaluative studies of palliative care services in the United Kingdom (UK), to ascertain patients' reported expectations and experiences of specialist care. We also demonstrate how secondary data analysis and synthesis can identify commonalities and differences between services. METHODS: Secondary qualitative data analysis was conducted on interview data gathered from 37 patients during three evaluation studies of specialist palliative care services. All studies used formative evaluation methodology. FINDINGS: Four themes were identified: (1) knowledge and information about services, (2) meeting practical and psychosocial needs, (3) lack of control, and (4) family atmosphere. Data are presented to illustrate the presence or absence of these themes in patients' accounts of their expectations and experiences of each service. STUDY LIMITATIONS: Data were collected at different times between 1998 and 2000, and interviews were conducted by different researchers. CONCLUSIONS: Synthesizing findings from small scale qualitative studies offers the possibility of demonstrating their applicability beyond local and specific contexts. It is imperative to listen to the experiences of patients and carers as a basis for developing interventions and guidelines for services. The methods proposed in this paper offer the potential for these voices of experience to be heard more widely.     

Being a palliative care nurse in an academic hospital: a qualitative study about nurses' perceptions of palliative care nursing

The original philosophy of palliative care emphasizes the importance of the integration of compassion and medical science. The meaning palliative care nurses assign to their relationships with patients has been described in several studies. This qualitative research was undertaken in order to elicit the way nurses working on a palliative care ward in an academic hospital perceive their role and gain insight into the problems they encounter. The findings present two different perceptions held by nurses about the nature of their work. The first, the more prominent, is 'striving to adopt a well-organized and purposeful approach as a nurse on an academic ward'; the second is 'striving to enhance the well-being of the patient'. Nurses should be supported in the development of their palliative care approach and be assisted in reflecting on their practice in terms of a model of 'reflective practice' and in the development of 'moral imagination'.     

Exploring community nurses' perceptions of life review in palliative care

Aims and objectives. This exploratory study aimed to identify community nurses’ understanding of life review as a therapeutic intervention for younger people requiring palliative care. The objectives set out to: (i) Describe the participants’ understanding of reminiscence and life review (ii) Detail their current ideas regarding a structured approach to using life review in the community setting. (iii) Outline their understanding of the possible advantages and limitations of life review in relation to palliative care. (iv) Identify future training requirements. Background. The literature review illustrated how the eighth developmental stage of Erikson's theory, ego‐integrity vs. despair, is a ‘crisis’ often faced by older people entering the final stage of life. Life review is considered a useful therapeutic intervention in the resolution of this crisis. Younger terminally ill people in the palliative stage of an illness may face the same final crises due to their reduced lifespan. Therefore, this study explored the benefits and limitations of life review as an intervention in palliative care. Method. The study used a purposive sample of community nurses responsible for delivering generic and specialist palliative care. A qualitative method of data collection in the form of three focus group interviews was used. Subsequent data were manually analysed, categorized and coded with associations between the themes identified. Results. The findings suggested that community nurses have limited knowledge pertaining to the use of life review and tend to confuse the intervention with reminiscence. Furthermore, they believed that life review could potentially cause harm to practitioners engaged in listening to another person's life story. However, the participants concur that with appropriate training they would find life review a useful intervention to use in palliative care. Conclusions. The results led to the identification of a number of key recommendations: Community nurses require specific education in the technicalities of life review and additional interpersonal skills training. The need for formalized support through clinical supervision is also recognized and discussed. Finally, suggestions are offered regarding the need to generate wider evidence and how, possibly, to integrate life review into existing palliative care services. Relevance to clinical practice. This study has demonstrated that community nurses are keen to extend the support offered to younger terminally ill people who are in the palliative stage of their illness. Despite having limited knowledge of life the main components and underpinning theory pertaining to life review participants could appreciate the potential of life review as a therapeutic intervention in palliative care and were keen to learn more about its use and gain the necessary knowledge and skills.     

Implementing audit in palliative care: an action research approach

AIM: To investigate the factors that influence the successful implementation of audit in a palliative care setting. BACKGROUND: Quality assurance is a necessary component of contemporary health care. In the past, palliative care has not generally been subject to systems of audit and quality management. However in recent years the need for all health care organizations to have clear policies and procedures for maintaining quality has become more pressing. METHOD: An action research project was conducted to investigate the implementation of audit in a palliative care setting, which involved the application and modification of the Support Team Assessment Scale (STAS). FINDINGS: A collaborative approach was adopted and this facilitated the identification of factors vital to successful introduction of the audit methodology into the unit. These included effective teamwork, the input of an external facilitator, good relationships with management and prompt and relevant feedback on progress. The use of STAS was fully integrated into the work of the unit and a robust programme of audit has been established. CONCLUSIONS: Combining the cyclical nature of action research methodology and the audit process with Lewin's change theory provided a clear conceptual framework for the research. This approach would be applicable in a range of health care settings to bring about improvements in quality management.     

Finnish public health nurses' experiences of primary health care based on the population responsibility principle

Implementation of a 'population responsibility' principle in Finnish health centres began in the late 1980s. The aim of this study was to describe public health nurses'(PHNs') experiences of primary health care based on this principle and to identify contextual and personal factors related to their experiences. The sample consisted of PHNs in 10 health centres. A questionnaire was developed based on a qualitative study. The survey was conducted in 1990 and repeated in 1992. The response rate was 84% for the 1990 sample ( n =102) and 91% for the 1992 sample ( n =131). In the multivariate analysis of variance type of community (urban/rural), size of the target population, task division model and existence of regular teamwork between social and health care personnel were chosen as contextual factors studied. Age, length of professional experience and having specialist education in midwifery were chosen as personal factors. Dependent variables were subscales on: experiences of planning and implementation, perceived influence of population responsibility on nurse–client relationships, comparison with previous experiences, views and experiences on comprehensiveness of care and job satisfaction. The majority of the PHNs experienced only minor changes in their work after the implementation of population responsibility. They were most critical about the way these changes were planned and implemented. Changes were mainly perceived as positive. There were some differences in the two samples, reflecting a shift from both positive and negative responses towards more neutral or more positive responses. Several contextual factors were multi-dimensionally related to the PHNs' experiences.     

A study of nurses' knowledge of a palliative approach in residential aged care facilities

Aim. To identify residential aged care nurses’ current knowledge of palliative care for older residents in need of end‐of‐life care. Background. Recently, there has been a growing interest in the delivery of palliative care in residential aged care facilities. While it is recognized that aged care nurses do possess palliative care knowledge the actual level of their knowledge has not been well documented. Design/method. An analytical study using a validated questionnaire tool – Palliative Care Quiz for Nursing, developed by Ross et al. [Journal of Advanced Nursing 23 (1996) 126–137] , combined with a demographic survey of Registered Nurses and assistants in nursing working in five high care residential aged care facilities in inner city region of Sydney, Australia. Results. The total Palliative Care Quiz for Nursing score possible was 20. The mean score for Registered Nurses was 11.7 (SD 3.1) and for AINs 5.8 (SD 3.3), the difference between scores being significant (t = 8.7, df 95, P = 0.000). Misconceptions in palliative care were identified for both the groups of carers. Conclusion. This research has highlighted the need for ongoing palliative care education for both the groups of primary carers. Relevance to clinical practice. The findings of this research highlight the existing palliative care knowledge of residential aged care nurses and provides evidence for education programmes.     

Nurse-patient relationships in palliative care

AIM: The aim of this paper is to report a study exploring aspects of nurse-patient relationships in the context of palliative care. BACKGROUND: Although there are numerous studies addressing nurse-patient relationships, little research has focused on these in the context of palliative are. Furthermore, no previous study has examined the relationship in the Chinese context. METHODS: Qualitative data were collected from 10 hospice nurses and 10 terminally ill patients by means of open ended unstructured interviews. Respondents were asked to reflect on practices and incidents that would allow an understanding of the meaning of nurse-patient relationships in palliative care. RESULTS: Four major categories emerged from the perspectives of patients and nurses: (1) forming a relationship of trust; (2) being part of the family; (3) refilling with fuel along the journey of living and dying; and (4) enriched experiences. Responses revealed that a relationship of trust is formed, and that nurses are not only regarded as health professionals, but also become part of the family or a good friend. Nurses who develop trusting relationships demonstrate a holistic approach to caring, show their understanding of patients' suffering, are aware of their unvoiced needs, provide comfort without actually being asked, and are reliable, proficient, competent and dedicated in their care. CONCLUSION: Trust, the achievement of the goals of patients and nurses, caring and reciprocity are important elements of nurse-patient relationships in palliative care. Such relationships not only improve patients' physical and emotional state, but also facilitate their adjustment to their illness, ease pain and can ultimately lead to a good death experience. It is nurses' personal qualities and skills, which are embedded in these relationships, that constitute excellence in nursing care. Nurses also derive satisfaction and are enriched through the relationships.     

Assessing palliative care needs: views of patients, informal carers and healthcare professionals

AIM: This paper reports a study to assess the palliative care needs of the adult population served by a healthcare provider organization in Northern Ireland from the perspectives of patients, informal carers and healthcare providers. BACKGROUND: Assessing palliative care need is a key factor for health service planning. Traditionally, palliative care has been associated with end-of-life care and cancer. More recently, the concept has been extended to include care for both cancer and non-cancer populations. Various approaches have been advocated for assessing need, including the exploration of professional provider and user perspectives of need. METHOD: Semi-structured qualitative interviews were undertaken with a purposive sample of patients and lay carers receiving palliative care services (n = 24). Focus groups were also conducted with multi-professional palliative care providers (n = 52 participants) and face to face interviews were undertaken with key managerial stakeholders in the area (n = 7). The focus groups and interviews concentrated on assessment of palliative care need. All the interviews were transcribed verbatim and analysed using Burnard's framework. FINDINGS: Professional providers experienced difficulty in defining the term palliative care. Difficulties in communication and information exchange, and fragmented co-ordination between services were identified. The main areas of need identified by all participants were social and psychological support; financial concerns; and the need for choice and information. All participants considered that there was inequity between palliative care service provision for patients with cancer and non-cancer diseases. CONCLUSION: All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs. For this to happen in practice, an integrated approach to palliative care is essential. The study methodology confirms the value of developing a comprehensive approach to assessing palliative care need.     

Illicit drug users in Northern Ireland: perceptions and experiences of health and social care professionals

Over the 30 years of conflict, Northern Ireland escaped the worst excesses of illegal drug trafficking and usage. This was in large part due to the 'policing' of local community crime by paramilitaries. However, since the first 'cease-fire' in 1994 the province has witnessed a dramatic and unprecedented rise in the availability of illicit drugs. This increased availability reflects rising consumption of these drugs in the province. The aim of this study was to explore the perceptions that a sample of health and social care professionals' hold of illicit drug users in Northern Ireland. A survey methodology was used. Community settings across Northern Ireland were accessed. Focus groups and face-to-face interviews were used as data collection methods. Thirty-five health and social care professionals took part in this study. Thirty-two took part in six focus groups; three respondents underwent one-to-one interview. The participating professionals reported to have little or no education or training in the care and treatment of illicit drug users. Some stated that they would reject the offer of education and training in this area to prevent contact with illicit drug users. Many displayed strongly negative views of this client group, often expressing a preference not to care for or treat these people, preferring all their care to be given by specialists in illicit drug treatment. These findings indicate that most of the health and social care professionals who took part in this study appear unprepared and unwilling to meet the challenge of caring for illicit drug users. The findings will be of interest to service providers within and outside the UK.     

Community palliative care nurse experiences and perceptions of follow-up bereavement support visits to carers

Community (district) nurses (CNs) are well positioned to provide follow‐up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow‐up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN‘s excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN‘s prior relationship with the bereaved family was an important determinant of the visits’ success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.     

Psychiatric nurses' lived experiences of working with inpatient care on a general team psychiatric ward

To reveal the meaning of being a nurse working with inpatient care on a team psychiatric ward in Sweden, 22 psychiatric nurses were interviewed and the transcribed texts were analysed by means of latent content analysis. Three themes emerged from the analysis: developing a working relationship with the patient in everyday caregiving; encountering and handling the unforseeable in daily living; and struggling with professional independence and dependency. Developing a working relationship with the patient in everyday caregiving meant that the nurse-patient relationship was the foundation of the caregiving and included being with, as well as doing for, and with, the patient. Four different approaches in daily caregiving were revealed: networking, teaching, containing and protecting. The nurses' approaches in the nurse-patient relationship alternated between being an 'expert' and a 'collaborator'. Encountering and handling unforeseeable situations meant that the nurses were exposed to and had to be prepared for unpredictable situations where they were on their own, handling sometimes strong emotional reactions and relying on their own ability to act. Struggling with professional independence and dependency meant that the nurses seemed to lack professional confidence, although they had many responsibilities, but also less authority to decide about overall care planning. Contextual aspects such as organizational hindrance, unsatisfactory work-environment and co-operation difficulties were illuminated. The result indicates the need for a stable and predictable organizational structure if nurses are to manage the demanding nurse-patient relationships that everyday caregiving requires. A question highlighted by this study is whether multidisciplinary team organization has been effectively developed in Sweden, as uncertainty about the roles and responsibilities of nurses was apparent.     

Development of nurses' abilities to reflect on how to create good caring relationships with patients in palliative care: an action research approach

Development of nurses' abilities to reflect on how to create good caring relationships with patients in palliative care: an action research approach In this paper we present an action research process aimed at enhancing nurses' abilities to reflect on how to create good caring relationships with patients in advanced home care. Another aim was to examine the usefulness of an emerging theory, derived from results from a previous study. The request for this project to take place came from an advanced home care unit which had received complaints concerning patients in the palliative phase. The action performed was clinical supervision, structured around abilities that nurses need in order to create good caring relationships. During the action research process 42 narratives were analysed by the participating group. Three different data collections were carried out and analysed with qualitative content analysis in a triangulation procedure. The emerging theory was found to be useful and was also refined. The nurses reported that they felt strengthened and had developed their ability to reflect over good caring relationships. Some changes to practice were carried out by the participating nurses. The result also indicates that action research can be helpful in examining the usefulness of an emerging theory.     

In search of legitimacy – registered nurses’ experience of providing palliative care in a municipal context

Background: The palliative care approach was originally developed for hospice care and for persons with cancer diseases, but has gradually expanded to embrace other contexts and people of all ages, with various life‐threatening diseases. The palliative care concept thus also applies to older people and the context of municipal care, where Registered Nurses (RNs) hold key care provision positions. The municipal context is not, however, focused primarily on advanced nursing care, and it is important to highlight RNs’ prerequisites for care provision. Aim: The study’s aim was to describe RNs’ experience of providing palliative care for older people in a municipal context. Data were collected through focus group discussions with 20 RNs from four different municipalities in southern Sweden and were analysed using conventional content analysis. Findings: The results showed that the nurses experienced that it was they who cushioned the effects of unclear responsibilities between different organizations, but had limited legitimacy in the municipal context and in relation to other care providers. The results also showed that nurses lacked proper support and prerequisites for providing high‐quality palliative care to older dying patients. Conclusion: The results pinpoint the importance of increased acknowledgement of nurses’ knowledge and skills and a critical view on the effects of moving towards an organization composed of different consultants, which can lead to even more unclear responsibility for nursing care provision.     

Palliative care Needs Rounds in rural residential aged care: A mixed-methods study exploring experiences and perceptions of staff and general practitioners

New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners’(GPs’) experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p?=?0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach.