7 results
Spiritual beliefs, practices, and needs at the end of life: Results from a New Zealand national hospice study
- Richard Egan, Rod MacLeod, Chrystal Jaye, Rob McGee, Joanne Baxter, Peter Herbison, Sarah Wood
-
- Journal:
- Palliative & Supportive Care / Volume 15 / Issue 2 / April 2017
- Published online by Cambridge University Press:
- 30 August 2016, pp. 223-230
-
- Article
- Export citation
-
Objective:
International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices.
Method:A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information.
Results:Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.
Significance of results:As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.
A scoping review of bereavement service outcomes
- Donna M. Wilson, Nurin Dhanji, Robyn Playfair, Sahana Srinivas Nayak, Gideon L. Puplampu, Rod Macleod
-
- Journal:
- Palliative & Supportive Care / Volume 15 / Issue 2 / April 2017
- Published online by Cambridge University Press:
- 29 June 2016, pp. 242-259
-
- Article
- Export citation
-
Objective:
This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.
Method:Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.
Results:Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.
Significance of results:This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.
Indigenous people's experiences at the end of life
- Wendy Duggleby, Samantha Kuchera, Rod MacLeod, Paul Holyoke, Tracy Scott, Lorraine Holtslander, Angeline Letendre, Tess Moeke-Maxwell, Linda Burhansstipanov, Thane Chambers
-
- Journal:
- Palliative & Supportive Care / Volume 13 / Issue 6 / December 2015
- Published online by Cambridge University Press:
- 15 June 2015, pp. 1721-1733
-
- Article
- Export citation
-
Objective:
The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research.
Method:Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013.
Results:Some 18 studies met the inclusion criteria, and their findings were synthesized. “Preparing the spirit” for transition to the next life was the overarching theme. “Preparing the spirit” occurred within the context of “where we come from.” Processes involved in “preparing the spirit” were healing, connecting, and protecting; through these processes, “what I want at the end of life” was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to “preparing the spirit.”
Significance of results:The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to “preparing the spirit” for the journey at the end of life.
“It's not about treatment, it's how to improve your life”: The lived experience of occupational therapy in palliative care
- Sarah Badger, Rod Macleod, Anne Honey
-
- Journal:
- Palliative & Supportive Care / Volume 14 / Issue 3 / June 2016
- Published online by Cambridge University Press:
- 15 June 2015, pp. 225-231
-
- Article
- Export citation
-
Objectives:
A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness.
Method:A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia.
Results:The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed.
Significance of results:This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.
Researching a Best-Practice End-of-Life Care Model for Canada*
- Donna M. Wilson, Stephen Birch, Sam Sheps, Roger Thomas, Christopher Justice, Rod MacLeod
-
- Journal:
- Canadian Journal on Aging / La Revue canadienne du vieillissement / Volume 27 / Issue 4 / Winter/Hiver 2008
- Published online by Cambridge University Press:
- 31 March 2010, pp. 319-330
-
- Article
- Export citation
-
The vast majority of the 220,000 Canadians who die each year, principally of old age and progressive ill health, do not have access to specialized hospice or palliative care. Hospice and palliative care programs are unevenly distributed across Canada, with existing programs limited in capacity and services varying considerably across programs. End-of-life (EOL) care is defined as “The services that may be needed by dying persons and their families or friends in the last year of life, as well as bereavement services following death.” Although some health and social services may be available, most dying Canadians are in the difficult position of not having ready access to a full range of services that could ease their final days of life. Most are thus at risk of uncoordinated and potentially inadequate EOL care. Among all persons, dying persons are arguably the most vulnerable. The dying process is often difficult as a result of emotional and physical challenges. Although the loving support of family and friends for dying persons is irreplaceable, EOL care is an important public obligation. A synthesis research project was conducted to identify a best-practice EOL care model for Canada, one featuring coordinated or integrated EOL care. Through site visits, literature reviews, Web-based surveys, and a home care data analysis, four essential components for a best-practice integrated EOL care model for Canada were identified: (a) universality, (b) care coordination, (c) assured access to a broad range of basic and advanced EOL services, and (d) EOL care provision regardless of care setting. This model is offered as a guide for the development of EOL care services across Canada.
Facing uncertainty: The lived experience of palliative care
- Roz Mckechnie, Rod Macleod, Sally Keeling
-
- Journal:
- Palliative & Supportive Care / Volume 5 / Issue 4 / December 2007
- Published online by Cambridge University Press:
- 25 October 2007, pp. 367-376
-
- Article
- Export citation
-
Objective:
This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.
Methods:Ten people, aged between 51 and 65, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design) and all had carcinoma. Data for the study was sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.
Results:The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.
Significance of results:Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.
Facing uncertainty: The lived experience of palliative care
- Roz McKechnie, Rod MacLeod, Sally Keeling
-
- Journal:
- Palliative & Supportive Care / Volume 5 / Issue 3 / September 2007
- Published online by Cambridge University Press:
- 24 September 2007, pp. 255-264
-
- Article
- Export citation
-
Objective: This qualitative research study listens to the narratives of people experiencing the dying process who attended the Otago Community Hospice, Dunedin, New Zealand.
Methods: Ten people, aged between 51 and 65 years old, were approached; two declined and one died sooner than expected. All were women (although this was not part of the original design), and all had carcinoma. Data for the study were sought through qualitative research interviews, considering the development of each participant's illness in relation to her perception of her embodiment in the palliative care setting, and concluding with questions about what she wants the people who care for and about her to learn from her experience. Consistent with this phenomenological approach, the method of analysis was thematic and interpretive.
Results: The main theme was the uncertainty that all participants felt throughout the diagnostic process and during treatment. Uncertainty, too, was a factor in how they managed their day, whether they would be able to sustain an outing or an activity or not, and whether they would be pain free. None were afraid of dying but hoped that when they did die, they would do so comfortably. The relationship with their general practitioners varied. Where fatigue or the effects of medication were not an issue, they could think clearly, but their bodies were experienced as letting them down and limiting their activities. The ideal of “living until you die” was not able to be fulfilled. The increasing approach of social death as they withdrew from their employment and social responsibilities affected them.
Significance of results: Whether one has a “good death” or not is determined not only by the progression and management of the disease process by health professionals, but also by the way in which one is perceived, by self and others. There are no guidelines for the dying role; everybody dies differently and individually.