The use of personal narratives in hospital-based palliative care interventions: An integrative literature review

2019 ◽  
Vol 33 (10) ◽  
pp. 1255-1271 ◽  
Author(s):  
Stine Gundtoft Roikjær ◽  
Malene Missel ◽  
Heidi Maria Bergenholtz ◽  
Mai Nanna Schønau ◽  
Helle Ussing Timm
Keyword(s):  
Palliative Care ◽  
Personal Narratives ◽  
Hospital Setting ◽  
Life Review ◽  
Eligibility Criteria ◽  
Theoretical Understanding ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Care Practices ◽  
Critical Appraisal Skills

Background: People living with life-threatening illness experience unmet existential needs despite the growing research and clinical field of palliative care. Narrative interventions show promise in managing these problems, but more knowledge is needed on the characteristics of narrative interventions and the feasibility of using personal narratives in a hospital. Aim: To review the literature on personal narratives in hospital-based palliative care interventions and to strengthen palliative care practices. Design: We conducted a systematic integrative review with qualitative analysis and narrative synthesis in accordance with PRISMA where applicable (PROSPERO#:CRD42018089202). Data sources: We conducted a systematic search in PubMed, Embase, Scopus, Cinahl, SocINDEX and PsychInfo for primary research articles published until June 2018. We assessed full-text articles against the eligibility criteria followed by a discussion of quality using the Critical Appraisal Skills Programme. Results: Of 480 articles, we found 24 eligible for this review: 8 qualitative, 14 quantitative and 2 mixed methods. The articles reported on dignity therapy, legacy building, outlook, short-term life review and life review. Data analysis resulted in five themes: core principles, theoretical framework, content of narrative, outcome and, finally, acceptability and feasibility. Conclusion: Various types of systematic palliative care interventions use personal narratives. Common to these is a shared psychotherapeutic theoretical understanding and aim. Clinical application in a hospital setting is both feasible and acceptable but requires flexibility regarding the practices of the setting and the needs of the patient.

Effects of a support group programme for patients with life-threatening illness during ongoing palliative care

2012 ◽  
Vol 27 (3) ◽  
pp. 257-264 ◽  
Author(s):  
Anette Henriksson ◽  
Kristofer Årestedt ◽  
Eva Benzein ◽  
Britt-Marie Ternestedt ◽  
Birgitta Andershed
Keyword(s):  
Palliative Care ◽  
Support Group ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Group Programme

scholarly journals A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Well Being ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening Illness ◽  
Spiritual Well Being ◽  
Life Threatening

Abstract Background: Conventionally, psycho-socio-spiritual interventions for parents of children with chronic life-threatening illness begin post child loss. Pre-loss interventions addressing anticipatory grief can improve holistic well-being and grief outcomes among family caregivers of dying patients. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life. However, inadequacies exist both globally and in Singapore in providing culturally sensitive psycho-socio-spiritual support to parents whose children need pediatric palliative services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapist-facilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child’s chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. The online NeW-I platform and the relative anonymity it offers to participants is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with emotional expression even during times of loss and separation. Together with four local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 72 parents. Potential effectiveness of NeW-I and accessibility and feasibility of implementing and delivering the intervention are assessed. Discussion: NeW-I aspires to improve psycho-socio-spiritual well-being of parents facing their child’s chronic life-threatening illness through a structured cyber-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study will inform the development of a standardized NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

Psychosocial Palliative Care

2014 ◽  
Author(s):  
International Psycho-Oncology Society
Keyword(s):  
Palliative Care ◽  
Cultural Sensitivity ◽  
Symptom Control ◽  
Physical Symptom ◽  
Global Perspective ◽  
Life Threatening Illness ◽  
Online Resource ◽  
Life Threatening ◽  
Psychiatric Complications ◽  
And Training

This online resource guides the psycho-oncologist through the most salient aspects of effective psychiatric care of patients with advanced illnesses. It reviews basic concepts and definitions of palliative care and the experience of dying, the assessment and management of major psychiatric complications of life-threatening illness, including psychopharmacologic and psychotherapeutic approaches, and covers issues such as bereavement, spirituality, cultural sensitivity, communication and psychiatric contributions to common physical symptom control. A global perspective on death and palliative care is taken throughout, and an appendix provides a comprehensive list of international palliative care resources and training programs.

Experiential Palliative Care Immersion: Student Nurse’s Narratives Reflect Care Competencies

2019 ◽  
Vol 41 (10) ◽  
pp. 1465-1480 ◽  
Author(s):  
Toni L. Glover ◽  
Hanna Åkerlund ◽  
Ann L. Horgas ◽  
Susan Bluck
Keyword(s):  
Palliative Care ◽  
Nursing Students ◽  
Individual Values ◽  
Undergraduate Nursing Students ◽  
Undergraduate Nursing ◽  
Immersion Experience ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Compassionate Communication

Many nurses report a lack of confidence providing care for patients facing a life-threatening illness. Palliative care leaders have devised primary palliative nursing care competencies (CARES [Competencies And Recommendations for Educating undergraduate nursing Students]) that all students should achieve. In this study, nursing students participated in an innovative palliative care immersion experience, the Comfort Shawl Project. We performed a reliable content analysis of their narrative reflections. The goal was to evaluate whether reflections on their interactions with patients/families were consistent with CARES competencies. Nine female students wrote reflections after gifting each of the 234 comfort shawls to patients. Four CARES-related categories were analyzed: Individual Values and Diversity, Compassionate Communication, Fostering Quality of Life, and Self-Insight and Emotion. Reflections were highly representative (41%) of recognizing Individual Values and Diversity, representing sensitivity for patients’ unique differences in values, an integral component of palliative care. The Comfort Shawl Project shows promise as an experiential immersion for introducing nursing students to CARES competencies.

Palliative care

2019 ◽  
pp. 865-872
Author(s):  
Joseph O’Neill
Keyword(s):  
Palliative Care ◽  
Key Management ◽  
Low Resource ◽  
Care Services ◽  
Life Threatening Illness ◽  
Humanitarian Crises ◽  
Palliative Care Services ◽  
Life Threatening

This chapter covers a fundamentally important and often overlooked area of medicine, and outlines how even in humanitarian crises palliative care principles should be applied to relieve suffering for those with life-threatening illness. As not all humanitarian situations allow comprehensive textbook palliative care services for all patients, this chapter provides the underlying principles of palliation, implementation in low-resource environments, and key management components to allow adoption in varying contexts.

Pre-hospital use of early warning scores to improve detection and outcomes of sepsis

2021 ◽  
Vol 26 (3) ◽  
pp. 122-129
Author(s):  
Marina Maciver
Keyword(s):  
Patient Outcomes ◽  
Early Warning ◽  
Hospital Setting ◽  
High Sensitivity ◽  
Early Warning Score ◽  
Bibliographic Databases ◽  
Eligibility Criteria ◽  
Early Warning Scores ◽  
Life Threatening ◽  
Hospital Use

Sepsis is a life-threatening complication from infection. The early detection of sepsis pre-hospital is challenging. Early warning scores (EWS) are used in hospitals to identify deteriorating patients. The pre-hospital setting could be a beneficial extension to the use of EWSs. This review aimed to determine whether EWSs can identify patients with sepsis pre-hospital and predict patient outcomes. Bibliographic databases were searched for studies evaluating the pre-hospital use of EWSs. Studies were screened using eligibility criteria. Two studies examined the ability of pre-hospital EWSs to identify patients with critical illness, showing high sensitivity but low specificity. Four studies determined the prognostic effects of the National Early Warning Score (NEWS). The patients identified by NEWS to be high-risk were associated with worse outcomes. This systematic review demonstrated the successful use of EWSs in the pre-hospital setting, in identifying patients most at risk of deterioration and as a useful tool for decision-making.

Children’s Views Are Not Taken Into Account in Accordance With Article 12 of the United Nations Convention on the Rights of the Child in the Family Talk Intervention When a Parent Is Cared for in Palliative Care

2020 ◽  
pp. 003022282094128
Author(s):  
Rakel Eklund ◽  
Ulrika Kreicbergs ◽  
Anette Alvariza ◽  
Malin Lövgren
Keyword(s):  
Palliative Care ◽  
United Nations ◽  
Support Programme ◽  
Rights Of The Child ◽  
Life Threatening Illness ◽  
The Family ◽  
Life Threatening ◽  
United Nations Convention ◽  
The United Nations ◽  
Children’S Views

Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child’s right to express their opinion and have it respected in processes that affect them. The aims of this paper were to explore the child’s active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care. Twenty families with 50 children participated. Fieldnotes were taken during the programme and later analysed with interpretive descriptions. The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in palliative care would benefit from implementing a child-centred approach in order for all children to be active participants.

scholarly journals Staying Present to Youth with an Unknown Future

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Susan Poitras
Keyword(s):  
Palliative Care ◽  
Clinical Practice ◽  
Pediatric Palliative Care ◽  
Future Thinking ◽  
Doctoral Study ◽  
Life Threatening Illness ◽  
The Future ◽  
Life Threatening ◽  
Research Findings

The intention of this workshop is to provide an opportunity to explore the various dimensions of clinical practice known to support and enhance coping in adolescents living with a life-threatening illness. The objectives are to: 1) Present recent research findings related to the future thinking activities of adolescents in pediatric palliative care; 2) Acknowledge that these findings stretch us as clinicians to “sit with” and \"create time for\" the youth’s exploration of future in the context of an anticipated shortened life; 3) Discuss several cases and provide experiential activities that can prepare the clinician in ‘being with’ and ‘staying present’ to youth who are exploring their future that remains unknown by virtue of the trajectory of illness.The workshop will be broken down into three parts. In the first 30 minutes the findings from a doctoral study aimed at examining the future thinking of adolescents living with a progressive life-threatening neurodegenerative illness will be presented and discussed. Secondly, consideration will be given to how clinicians can mindfully prepare themselves for supporting adolescents and to consider aspects of the clinical self in our work with this population and finally, through both storytelling and the facilitation of active experiential activities, the presenters will share stories and ideas that have been integrated into existing practices.

scholarly journals Palliative Care as a Form of Relief for the Dying: A South African Perspective

Obiter ◽  
2020 ◽  
Vol 41 (2) ◽  
pp. 348-370
Author(s):  
Marc Welgemoed ◽  
Henry Lerm
Keyword(s):  
South Africa ◽  
Palliative Care ◽  
South African ◽  
Community Resources ◽  
Current State ◽  
Life Threatening Illness ◽  
Relief Of Suffering ◽  
Life Threatening ◽  
African Perspective ◽  
State Of Affairs

This article has a critical look at the current state of affairs in palliative care in South Africa. While euthanasia remains unlawful in South Africa, there is only one alternative – namely, palliative care – to mitigate pain and symptoms, make life tolerable, and ease the emotional stress of dying for patients and their families. Palliative care, unlike euthanasia, has always been regarded as a sound medical practice, ethically, morally and legally. The practice the world over includes family, friends and community. However, no system or legislation has been put in place in South Africa to serve as a guideline for end-of-life practices. The focus of this article is to try to establish guidelines through a multidisciplinary approach that includes the family and makes use of community resources to improve the quality of life of patients and families facing the problems associated with life-threatening illness, through the prevention and relief of suffering.

scholarly journals End of Life Care and Family Issues and their Concerned at Palliative Care at Bhaktapur Cancer Hospital

2019 ◽  
Vol 4 (3) ◽  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Life Threatening Illness ◽  
Family Issues ◽  
Life Threatening ◽  
Advance Care ◽  
Life Threatening Event

palliative care also focuses on issues beyond end of life care such as care for those with cronic illness and potentially life threatening illness in remission. In addition end of life care focuses on a number of issues beyond the scope of palliative care such as advance care planning which should be under taken even by healthy and young persons who may experiance an unanticipated acute, life threatening event such as an accident.

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