Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
The Most Important Aspects for a Good Death: Perspectives from Parents of Children with Cancer
cancer patients; childhood neoplasms; death; hospice and palliative nursing; pediatric oncology nursing
A good death is an important concept in pediatric palliative care. To improve the quality of pediatric palliative care, it is imperative to identify which domain is most important for a good death among children with cancer and their parents. This study aimed to (1) assess the essential domains for a good death from the perspectives of parents whose children have cancer using the Good Death Inventory (GDI) and (2) examine which characteristics are associated with the perception of a good death. An anonymous cross-sectional questionnaire was administered to 109 parents of children with cancer. Data were collected using a validated Korean version of the GDI. Descriptive statistics, t-test, and ANOVA were used to identify the preferred GDI domains. Multiple linear regression analysis was performed to identify factors associated with the GDI scores. The most essential domains for a good death included “maintaining hope and pleasure” and “being respected as an individual.” The factors most strongly associated with the perception of a good death were end-of-life plan discussion with parents or others and parental agreement with establishing a living will. Encouraging families to discuss end-of-life care and establish a living will in advance can improve the quality of death among children with cancer.
Kim JY; Park BK
Inquiry
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/00469580211028580" target="_blank" rel="noreferrer noopener">10.1177/00469580211028580</a>
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Funding Source; Health Resource Utilization; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Sedig LK; Spruit JL; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R
American Journal of Hospice & Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</a>
Team value and visual voice: Healthcare providers' perspectives on the contributions and impact of Art Therapy in pediatric hematology/oncology clinics
Childhood neoplasms; Healthcare providers; Medical art therapy; Pediatric bone marrow transplant; Pediatric hematology/oncology; Psychosocial interventions
Attending to the psychosocial needs of pediatric patients, families and health care providers (HCPs) is critical to the delivery of personalized medical care. Art therapy in this context has been found to be a source of holistic psychosocial support for pediatric hematology and oncology care. Interviews of 21 HCPs in the United States were conducted to assess the impact and contributions of art therapy in pediatric hematology/oncology. HCPs were unanimously supportive of art therapy, reporting it being impactful to the patients, caregivers and providers, and the hospital setting. They noted that it provides a visual voice to the patient experience and creates a unifying, child and family centered space of normalcy and connection. The art therapist is seen as a vital part of the medical team, through their insights and support across the spectrum of hem/onc care. The high demands on art therapists and limited understanding of the scope of clinical practice are challenges that were identified. Art therapy supports the psychological needs of pediatric patients, families, and HCPs and may be an invaluable part of pediatric medical teams for assessment and support. Further education, research and understanding of the contributions of ATs in medical settings could help advance their roles in these contexts. Copyright © 2021 The Author(s)
Snyder K; Malhotra B; Kaimal G
Arts in Psychotherapy
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.aip.2021.101808Get" target="_blank" rel="noreferrer noopener">10.1016/j.aip.2021.101808Get</a>
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Female; Funding Source; Health Resource Utilization; Human; Male; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Sedig L K; Spruit J L; Paul T K; Cousino M K; McCaffery H; Pituch K; Hutchinson R
American Journal of Hospice & Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</a>