Pediatric Palliative Care Parents’ Distress, Financial Difficulty, and Child Symptoms

Boyden, Jackelyn Y.; Hill, Douglas L.; Nye, Russell T; Bona, Kira; Johnston, Emily E.; Hinds, Pamela S.; Friebert, Sarah; Kang, Tammy I.; Hays, Ross M.; Hall, Matthew; Wolfe, Joanne; Feudtner, Chris

doi:10.1016/j.jpainsymman.2021.08.004

Cited by 28 publications

(24 citation statements)

References 49 publications

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“… 2 ,p95 Quantitative studies have found self-reported lower resilience, greater symptoms of posttraumatic distress, greater emotional distress, higher levels of anxiety, more health problems, fewer healthy behaviors, more unhealthy behaviors, sleep disturbances, and lower quality of life among parents of children with LTCs. 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 If their child is hospitalized, parents may experience high levels of distress both during and after the hospitalization. 9 , 16 , 17 , 18 Research regarding siblings, with few exceptions, 3 , 4 has focused on those whose sister or brother had cancer; these siblings may experience greater stress, depression, anxiety, problems with eating and sleeping, behavioral problems, lower quality of life, disruption of academic and social life, and poorer relationships with their parents.…”

Section: Introductionmentioning

confidence: 99%

Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

et al. 2021

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IMPORTANCE Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.OBJECTIVES To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions. DESIGN, SETTING, AND PARTICIPANTSThis retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021. EXPOSURES Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment.MAIN OUTCOMES Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level. RESULTSThe study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85).

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Section: Introductionmentioning

confidence: 99%

Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

et al. 2021

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“…Families also needed financial help, practical tips on managing the child at home, and supporting other children [47,48]. Moreover, financial difficulties contributed to psychological distress amongst parents [49].…”

Section: Needs Of Children and Their Families In A Paediatric Oncology Settingmentioning

confidence: 99%

Palliative Care in Paediatric Oncology: an Update

2022

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Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. Recent Findings Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Summary Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.

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“…The majority of parents of pediatric oncology patients are said to be either mildly or severely distressed. 2 There is also the challenge that lies with the side effects of chemotherapy along with the struggle in communicating with some young children. Due to side effects, patients can present distressed and require hospital admission, under the guise that it is due to their original condition rather than the treatment.…”

Section: Comment On: Secondary Impacts Of Constipation In Acute Lymphoblastic Leukemia In Us Children's Hospitalsmentioning

confidence: 99%

“…Saif Abbas Chatoo 2 Zayn Ahmad 3 1 UCL Medical School, London, UK 2 School of Medicine, Cardiff, UK 3 Barts and The London School of Medicine and Dentistry, London, UK…”

Section: Rameez Naqvimentioning

confidence: 99%

Comment on: Secondary impacts of constipation in acute lymphoblastic leukemia in US children's hospitals

Naqvi

Chatoo

Ahmad

2021

Pediatric Blood & Cancer

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Pediatric Palliative Care Parents’ Distress, Financial Difficulty, and Child Symptoms

Cited by 28 publications

References 49 publications

Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health

Palliative Care in Paediatric Oncology: an Update

Comment on: Secondary impacts of constipation in acute lymphoblastic leukemia in US children's hospitals

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