Parents´ Lived Experience Caring for a Child with Breathlessness Receiving Palliative Care

2019 ◽  
Author(s):  
June Hemsley
Keyword(s):  
Palliative Care ◽  
Lived Experience

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Marwa Halabi ◽  
Inaam Khalaf ◽  
Salam Bani Hani
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Lived Experience ◽  
Care Service ◽  
Health Care Service ◽  
Stroke Recovery ◽  
Care Needs ◽  
Middle Income ◽  
Content Type ◽  
Palliative Care Needs

Purpose This study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs. Design/methodology/approach A literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature. Findings The findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors. Originality/value This review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

32 Examining the key factors impacting on the implementation of an educational program on constipation in specialist palliative care

2018 ◽  
Vol 8 (3) ◽  
pp. 371.3-372
Author(s):  
S McIlfatrick ◽  
DHL Muldrew ◽  
E Carduff ◽  
M Clarke ◽  
J Coast ◽  
...  
Keyword(s):  
Palliative Care ◽  
Lived Experience ◽  
Educational Program ◽  
Complex Interventions ◽  
Successful Implementation ◽  
List Type ◽  
Social Suffering ◽  
Specialist Palliative Care ◽  
Key Factors ◽  
Services Research

IntroductionConstipation is one of the most common symptoms in patients in specialist palliative care (SPC) settings and can cause considerable physical psychological and social suffering for the patient and their family. Due to the high variability in constipation assessment and management in SPC settings questions exist around how to implement an educational program in practice to address this clinical gap.AimTo develop and test the feasibility and acceptability of a novel educational intervention for HCPs to manage constipation experienced by people in SPC settings.MethodUsing the MRC framework for complex interventions and guided by the consolidated framework for implementation research an online resource was developed considering the content context and processes for implementation.ResultsAssessment prevention and management were identified as the core aspects. Six sessions with theoretical content application to practice and reflection through interacting with colleagues were developed in line with the best available evidence. Incentives including an educational bursary and alignment with revalidation and support from senior management champions and the research team were identified as key elements needed successful implementation. Funding IT infrastructure and attitudes to the content have been flagged as potential barriers to success.ConclusionA six week blended program covering the key concepts for assessment and management of constipation in palliative care has been created. Content evidence from the literature and empirical data on the preferred structure and method of delivery as well as key considerations of the contextual factors have been identified as key factors for implementation.References. Craig P, et al.Developing and evaluating complex interventions: The new medical research council guidance. BMJ Clinical Research Ed2008;337(October):a1655. Available at: http://discovery.ucl.ac.uk/168426/. Damschroder LJ, et al. Fostering implementation of health services research findings into practice: A consolidated framework for advancing implementation science. Implementation Science2009;4(50).. Friedrichsen M, Erichsen E. The lived experience of constipation in cancer patients in palliative hospital-based home care. Int J Palliat Nurs [Internet] 2004;10(7):321–5. Available from: http://search.ebscohost.com/login.aspx?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl?=13576321&AN=13991056&h=XKMF4r08srZuhDY0j7C95oLLyYKNHUcvoeEuhyXNnsIM2BI%2BEhmcY1pPP%2BN1pvrMzQ9Bn9b5j45X6WzyBRydEA%3D%3D&crl=c [Accessed: 2017 August 21]. Tvistholm N, Munch L, Danielsen AK. Constipation is casting a shadow over everyday life? A systematic review on older people’s experience of living with constipation [Internet]. Journal of Clinical Nursing2017;26:902–14. Available from: http://doi.wiley.com/10.1111/jocn.13422 [Accessed: 2017 August 21]

Facing uncertainty: The lived experience of palliative care

2007 ◽  
Vol 5 (4) ◽  
pp. 367-376 ◽  
Author(s):  
Roz Mckechnie ◽  
Rod Macleod ◽  
Sally Keeling
Keyword(s):  
Qualitative Research ◽  
Palliative Care ◽  
Lived Experience ◽  
Disease Process ◽  
Phenomenological Approach ◽  
Diagnostic Process ◽  
Main Theme ◽  
Original Design ◽  
Social Death ◽  
Palliative Care Setting

ABSTRACTObjective: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.

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