Spiritual Care: Minimizing the Vulnerability of Parents Whose Children With Cancer Face the End of Life

2019 ◽  
Vol 37 (2) ◽  
pp. 105-115
Author(s):  
Cheryl L. Petersen
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
Spiritual Care ◽  
Continuing Bonds ◽  
Methodological Framework ◽  
Search For Meaning ◽  
Children With Cancer ◽  
Bereaved Parents ◽  
Qualitative Literature ◽  
Support Plan

There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O’Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.

scholarly journals An Online Educational Program Improves Pediatric Oncology Nurses’ Knowledge, Attitudes, and Spiritual Care Competence

2016 ◽  
Vol 34 (2) ◽  
pp. 130-139 ◽  
Author(s):  
Cheryl L. Petersen ◽  
Margaret Faut Callahan ◽  
Donna O. McCarthy ◽  
Ronda G. Hughes ◽  
Rosemary White-Traut ◽  
...  
Keyword(s):  
End Of Life ◽  
Spiritual Care ◽  
Repeated Measures ◽  
Educational Program ◽  
Longitudinal Design ◽  
Educational Interventions ◽  
Pediatric Nurses ◽  
Children With Cancer ◽  
Positive Attitudes ◽  
Prospective Longitudinal

This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses’ attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. It was hypothesized that the intervention would increase nurses’ positive attitudes toward and knowledge of spiritual care and increase nurses’ level of perceived spiritual care competence. A positive correlation was expected between change in nurses’ perceived attitudes toward and knowledge of spiritual care and change in nurses’ perceived spiritual care competence. A prospective, longitudinal design was employed, and analyses included one-way repeated-measures analysis of variance, linear regression, and partial correlation. Statistically significant differences were found in nurses’ attitudes toward and knowledge of spiritual care and nurses’ perceived spiritual care competence. There was a positive relationship between change scores in nurses’ attitudes toward and knowledge of spiritual care and nurses’ spiritual care competence. Online spiritual care educational programs may exert a lasting impact on nurses’ attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life. Additional studies are required to evaluate the direct effects of educational interventions patient outcomes.

Bereaved parents' views on end‐of‐life care for children with cancer: Quality marker implications

Cancer ◽  
2020 ◽  
Vol 126 (14) ◽  
pp. 3352-3359
Author(s):  
Emily E. Johnston ◽  
Jannelle Molina ◽  
Isaac Martinez ◽  
J. Nicholas Dionne‐Odom ◽  
Erin R. Currie ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Children With Cancer ◽  
Bereaved Parents ◽  
Quality Marker

scholarly journals ‘Living in parallel worlds’ – bereaved parents’ experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study

2021 ◽  
pp. 026921632110017
Author(s):  
Cherith J Semple ◽  
Eilís McCaughan ◽  
Esther R Beck ◽  
Jeffrey R Hanna
Keyword(s):  
End Of Life ◽  
Psychosocial Adjustment ◽  
Family Life ◽  
Life Experience ◽  
Qualitative Interviews ◽  
Later Life ◽  
Support Service ◽  
Dependent Children ◽  
Bereaved Parents ◽  
Death Of A Parent

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents’ experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in ‘parallel worlds’ throughout the end of life period. In one world, ‘living in the moment’, cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as ‘intermitted glimpses that death is approaching’, shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly ‘falling off the cliff’; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

Social Support and Siblings of Children with Cancer: A Scoping Review

2021 ◽  
Author(s):  
Sarah E. Wawrzynski ◽  
Megan R. Schaefer ◽  
Nena Schvaneveldt ◽  
Melissa A. Alderfer
Keyword(s):  
Social Support ◽  
Scoping Review ◽  
Children With Cancer

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

2021 ◽  
Author(s):  
Prasanna Ananth ◽  
Sophia Mun ◽  
Noora Reffat ◽  
Soo Jung Kang ◽  
Sarah Pitafi ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Care Quality ◽  
Life Care ◽  
Children With Cancer ◽  
Symptom Screening ◽  
Palliative Care Consultation ◽  
Patient Reported

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

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