Highlights
- •Mothers of children in Pediatric Palliative Care experience several difficulties about family experiences, social life and care.
- •Mothers experience some problems such as fear of loss, depression, care burden, social support, in PPC.
- •The characteristics of high quality of life for children and mothers are largely dependent on palliative care components
Abstract
Purpose
This study aims to better understand the experiences of mothers of children receiving
pediatric palliative care.
Design and methods
The qualitative phenomenological method was used to determine the mothers' experiences.
The study sample included 15 mothers. Individual interviews, an introductory information
form and a semi-structured interview form were used for data collection. The data
were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating
themes.
Results
Three main themes of the interviews emerged; family experiences, social life and care
in the palliative care unit. The mothers said that family relationships were affected,
that they experience fear of loss, that they experience depression, that all responsibility
for treatment and care lies with the mothers, and that there is no social support.
Mothers said that they are in the same place as mothers of children in similar situations
and that they are happy and comfortable because they have single rooms. In addition,
the mothers stated that they are very afraid of the COVID-19 virus infecting their
children and therefore losing their children.
Conclusions
The mothers experienced some problems such as fear of loss, depression, care burden,
social support, exclusion, daily life, social relationships, feeling safe, and emotional
effect.
Practice implications
Pediatric nurses need to understand mothers' anxiety, grief, relationships with their
children, and coping strategies to provide support.
Keywords
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pediatric Nursing: Nursing Care of Children and FamiliesAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Pediatric palliative care nursing.Annals of Palliative Medicine. 2019; 8: 39-48
- Alone in a crowd? Parents of children with rare diseases’ experiences of navigating the healthcare system.Journal of Genetic Counseling. 2018; 1-11
- Mothers’ experiences of a Women’s health and empowerment program for mothers of a child with a disability.Journal of Autism and Developmental Disorders. 2018; 48: 2174-2186
- Psychological research as a phenomenologist views it.in: Valle R.S. King M. Existential phenomenological alternatives for psychology. Open University Press, New York1978
- Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study.Palliative Medicine. 2016; 30: 950-959
- Development and assessment of a measure of parent and child needs in pediatric palliative care.Journal of Pain and Symptom Management. 2018; 55: 1077-1084
- Perspectives of health professionals and educators on the outcomes of a national education project in pediatric palliative care: The Quality of Care Collaborative Australia.Advances in Medical Education and Practice. 2019; 10: 949
- Home Care of Children and Youth With Complex Health Care Needs and Technology Dependencies.Pediatrics. 2012; 129: 996-1005https://doi.org/10.1542/peds.2012-0606
- The lack of systematic training for health care providers, a challenge for providing pediatric palliative home care: A comparative study.International Journal Of Pediatrics. 2019; 7: 9481-9496
- Challenges and priorities for pediatric palliative care research in the US and similar practice settings: Report from a pediatric palliative care research network workshop.Journal of Pain and Symptom Management. 2019; 58: 909-917
- Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal.Journal for Specialists in Pediatric Nursing. 2021; 26 (e12325): 1-10
- Cost analysis and policy implications of a pediatric palliative care program.Journal of Pain and Symptom Management. 2016; 52: 329-335
- Visualizing social support in home pediatric palliative care using network maps.Palliative Medicine. 2020; 34: 378-386
- Parental decision-making on utilisation of out-of-home respite in children’s palliative care: Findings of qualitative case study research-a proposed new model.Child: Care, Health and Development. 2016; 42: 51-59
- Data were saturated.Qualitative Health Research. 2015; 25 (https://doi.org/10.1177%2F1049732315576699): 587-588
- Lived experiences of jordanian mothers caring for a child with disability.Disability and Rehabilitation. 2018; 40: 2723-2733
- Quality of life and burden of caregivers of children and adolescents with disabilities.Special Care in Dentistry. 2019; 39: 380-388
- A call for qualitative power analyses.Quality & Quantity. 2007; 41: 105-121
- Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.Palliative Medicine. 2020; 34 (https://doi.org/10.1177%2F0269216319885818): 309-318
- Evidence on the cost and cost-effectiveness of palliative care: A literature review.Palliative Medicine. 2014; 28: 130-150
- Pediatric palliative care in oncology.Journal of Clinical Oncology. 2020; 38: 954
- Qualitative research in nursing: Advancing the humanistic imperative.Lippincott Williams & Wilkins, 2011
- Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study.European Journal of Pediatrics. 2019; 1-11
- Parental experiences with a paediatric palliative care team: A qualitative study.Palliative Medicine. 2017; 31: 956-963
- The benefits and burdens of pediatric palliative care and end-of-life research: A systematic review.Journal of Palliative Medicine. 2019; 22: 915-926
- The impact of the coronavirus pandemic on pediatric palliative care team structures, services, and care delivery.Journal of Palliative Medicine. 2020; 24: 1213-1220
- A guide to phenomenological research.Nursing Standard. 2015; 29: 38-43
- Family experiences with palliative care for children at home: A systematic literature review.BMC Palliative Care. 2020; 19: 1-19
- Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs.BMC Pediatrics. 2015; 15: 197
- Integrating palliative care and symptom relief into paediatrics: A WHO guide for health care planners, implementers and managers.World Health Organization, Geneva2018
- Theoretical frameworks, methods, and procedures for conducting phenomenological studies in educational settings.Turkish Online Journal of Qualitative Inquiry. 2015; 6: 1-20
- When parents face the death of their child: A nationwide cross-sectional survey of parental perspectives on their child’s end-of life care.BMC Palliative Care. 2016; 15: 1-14
Article info
Publication history
Published online: September 08, 2022
Accepted:
August 18,
2022
Received in revised form:
August 10,
2022
Received:
May 4,
2022
Identification
Copyright
© 2022 Elsevier Inc. All rights reserved.
