Background: Palliative care aims to support people to live actively until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.
Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.
Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.
Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.
Background: People in palliative and end of life care often experience issues relating to feelings of loneliness and feeling unable to connect with and express their emptions. This can lead to poorer outcomes for people, and inhibits person-centred experiences.
Aim: To understand the benefits of poetry therapy for people in palliative and end of life care.
Methods: A narrative review of literature pertinent to the use of poetry with people in palliative and end of life care produced 13 relevant papers, which are presented within this paper.
Results: Within the literature, 4 key themes emerged: (1) The impact of poetry on the wellbeing of people in palliative and end of life care, (2) the impact of poetry on the wellbeing and confidence of health care professionals, (3) the value of poetry for family members preparing for and coping with bereavement, and (4) The value of poetry in facilitating person-centred practices in palliative care.
Conclusions: Poetry therapy can enable a person-centred culture by promoting feelings of well being for people in palliative care, and is also beneficial for health care professionals and family members.
BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion.
OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland.
METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet.
RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion.
CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.
BACKGROUND: Goal setting is recognised as an important way of supporting people to live as actively as possible until death. However, there is little agreement about how goal setting should be handled or delivered by health professionals in everyday practice.
AIM: To investigate health-care practitioners' understanding and practice of patient-centred goal setting in a hospice.
METHODS: A comparative case study of 10 healthcare practitioners in one hospice. Non-participant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis.
RESULTS: Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective, rather than being patient-centred. Participants' goal-setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient-centred goals.
CONCLUSION: While goal setting is valued, it is practiced in an implicit, practitioner-centred and inconsistent manner. A more explicit, person-centred goal setting process may support practitioners more consistently in helping patients to identify their priorities and enhance their quality of life.
RATIONALE: Healthcare providers' beliefs, attitudes, experiences and knowledge, which guide the care they deliver, are the key factors influencing the quality of palliative care. Education and coaching innovation are needed to translate research outcomes and adopt evidence-based nursing care into practice.
OBJECTIVES: To evaluate the impact of an advanced educational and coaching programme in a family systems' nursing approach for palliative care nurses in a home-care setting.
METHODS: A quasi-experimental study using qualitative data from open-ended questions to augment the quantitative outcome study that included a single-group, pre- and post-test design. A total population sample of nurses was recruited from a specialised palliative home care unit at a university hospital. The study utilised two self-reported questionnaires.
RESULTS: There was a statistically significant increase in the nurses' critical appraisal of clinical nursing practice related to family nursing after participation in the educational programme than before. No statistical difference was found in items related to nurses' experience of the interaction and reciprocity in the nurse-family relationship after participation in the programme than compared to before or in nurses' cancer-related beliefs. However, there was an overall significant positive change found in attitudes towards families in the total score of the Family Practice Scale. Nurses were also more positive about the further development of their knowledge and skills in advanced family nursing evident in the qualitative data.
CONCLUSION: An advanced educational intervention programme was successful in improving the nurses' knowledge, skills, satisfaction and confidence in relation to applied family nursing approach within the context of caring for families affected by advanced/final stage cancer. However, further refinement of the implementation process is needed to enhance family care improvement and the nurses' professional development in advanced family nursing in specialised palliative care.
BACKGROUND: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations.
AIM: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package).
DESIGN: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data.
SETTING AND PARTICIPANTS: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of 12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis.
RESULTS: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs ( p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness ( p = 0.001, confidence interval: -1.22, -0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals.
CONCLUSION: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.
Context: Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK.
Aims: This study aims to evaluate the EHA palliative care project.
Settings and Design: Rapid evaluation method using a mixed method realist approach at the five project hospital sites.
Methods: An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site.
Analysis: Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC).
Results: Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services.
Conclusions: Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.
Following an observational study of styles of nurse–patient engagement in a hospice, Erna Haraldsdottir describes the process of starting up an arts therapy project with film-maker Amy Hardie that involved patients and staff at Strathcarron Hospice in Denny, Scotland – with the aim of enabling authentic responses to death and dying.
La perception de la famille vis-à-vis de la condition du patient peut être une aide précieuse quand il s'agit de diagnostiquer le mourir. L'auteure s'appuie sur une histoire personnelle pour montrer comment une détresse inutile peut être évitée si la famille est consultée de manière précoce par les professionnels de santé.
En 2009, le ministère serbe de la Santé a adopté un plan national de soins palliatifs, faisant émerger la vision d'un système de soins palliatifs global et moderne à travers toute la Serbie. De mars 2011 à novembre 2014, un projet financé par l'Union Européenne a été mené afin de mettre ce plan en oeuvre grâce à l'implantation d'une assistance technique et à l'application des normes européennes et internationales. Des progrès majeurs ont été accomplis en matière de formation aux soins palliatifs, de politique et de législation, de sorte que la situation des soins palliatifs est passée de l'implantation locale à l'intégration préliminaire. Cependant, des progrès restent à accomplir afin de garantir l'accès aux soins palliatifs pour tous ceux qui en ont besoin. [d'après résumé revue]
Les auteurs ont identifé et synthétisé la littérature publiée concernant l'établissement d'objectifs en soins palliatifs. La revue de la littérature montre que l'établissement d'objectifs est reconnu comme un composé important des soins palliatifs centrés sur le patient mais il ne semble pas y avoir de consensus quant à des "bonnes pratiques".
Cet article présente les principales conclusions du dernier congrès annuel de la Société de recherche en soins palliatifs du Royaume-Uni. Ces conclusions renvoient aux thèmes que la recherche en soins palliatifs doit investiguer : la réhabilitation de la physiothérapie, l'usage des arts créatifs, les décisions de fin de vie, la notion de bonheur dans différents groupes ethniques, etc.
Un nouveau modèle de promotion des soins palliatifs a été importé en Ecosse d'Australie. Ce modèle permet d'aborder ouvertement les thèmes de la fin de vie et de la mort auprès de la population. L'article décrit les premières étapes de développement de ce modèle.
Alors que la grossesse et l'accouchement sont synonymes de joie et symboles de vie, que faire lorsque l'on est sage-femme et que l'on est confrontée au décès d'une mère lors de la venue au monde de son enfant ? Les femmes à risque, notamment celles atteintes d'une maladie évolutive, pourraient-elles bénéficier d'une approche palliative ? Les auteurs tentent d'apporter des réponses.