Parental Perceptions of Care of Children at End of Life

ContextAlthough a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. ObjectivesTo explore the perspectives of GPs who care for children with advanced-stage cancer in a homebased setting. MethodsIn this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). ResultsA total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients.The median interval between the child's death and completing the questionnaire was 7 years.The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%).Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT3 death, and they rated their own distress level as relatively high during the terminal phase (median score: 6, range: 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among healthcare professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.

show abstract

“…5 professionals are recognized as determinants of providing high-quality paediatric palliative care [14][15][16] .…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Geest

Bindels

Pluijm

et al. 2017

Journal of Pain and Symptom Management

View full text Add to dashboard Cite

show abstract

“…61 Parents have shared that they felt sibling support groups and bereavement follow-up was lacking and sorely needed. 62,63 Spiritual The spiritual dimension of pediatric palliative care refers to how the child understands the meaning of an experience. 19 Spirituality comes into focus when an individual faces emotional stress, physical illness, or death.…”

Section: Socialmentioning

confidence: 99%

Palliative nursing care for children and adolescents with cancer

Foster¹,

Bell²,

McDonald³

et al. 2012

NRR

View full text Add to dashboard Cite

Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psychological, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children's understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced practice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.

show abstract

“…This service provides families an opportunity to share their grief with others who have experienced the same kind of loss and to reconnect with the staff members who cared for their child, a need that has been repeatedly identifi ed in the literature. 8,10,12,19,21,66 The service includes music, poetry, sharing memories, art projects sponsored by the Arts in Medicine program, and release of live butterfl ies to honor the memory of the children.…”

Section: Ongoing Support and Lasting Communicationmentioning

confidence: 99%

“…9,12,18,42,43,46 Feedback from bereaved parents has indicated that families often do not know it is appropriate to cut a lock of hair or take pictures until the possibility is suggested to them and have later regretted not doing so. 21,43 Procedures for organ and tissue donation, involvement of a medical examiner, and handling the child's body should be explained to the family with sensitivity, by using language that distinguishes between the human body and the child's spirit. 30 On occasion, families may request to transport the body themselves to the funeral home.…”

Section: Explanationmentioning

confidence: 99%

See 1 more Smart Citation

Caring for Pediatric Patients’ Families at the Child’s End of Life

Mullen

Reynolds

Larson

2015

Critical Care Nurse

View full text Add to dashboard Cite

Nurses play an important role in supporting families who are faced with the critical illness and death of their child. Grieving families desire compassionate, sensitive care that respects their wishes and meets their needs. 1-5 Some nurses feel anxiety related to the experience of death and are inadequately prepared to provide end-of-life care. 3,6,7 We begin by presenting a case that illustrates a family's response when faced with such a life-altering event and the challenges nurses face in caring for and communicating with the family throughout the end-of-life experience. Next, we review practical strategies that nurses can use to communicate with patients' families at the end of a child's life. We also provide additional strategies to provide compassionate, sensitive care that respects a family's wishes and attends to the needs of the family. Finally, we describe a bereavement program designed to facilitate lasting communication with the grieving family. This article has been designated for CE credit. A closed-book, multiple-choice examination follows this article, which tests your knowledge of the following objectives:1. Describe the challenges nurses face in caring for and communicating with the family throughout the end-of-life experience 2. Discuss strategies to provide compassionate care that respects a family's wishes and attends to the needs of the family throughout the end-of-life experience 3. Identify strategies that nurses can use to communicate with patients' families at the end of a child's life CE Continuing Education 46

show abstract

Parental Perceptions of Care of Children at End of Life

Cited by 32 publications

References 26 publications

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners

Palliative nursing care for children and adolescents with cancer

Caring for Pediatric Patients’ Families at the Child’s End of Life

Contact Info

Product

Resources

About