The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Although the current evidence suggests that the existing palliative care services are not meeting the needs of these families, especially the parents, these studies are heterogeneous with inconsistent results. The aim of this study was to systematically synthesize and critically evaluate the available evidence on unmet needs of parents in pediatric palliative care.
Methods:
A qualitative systematic review was conducted, informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses 2020 statement. Five electronic databases: MEDLINE, Scopus, Web of Science, CINAHL, and PsychINFO were searched. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) checklist and then analyzed using a framework analysis.
Results:
Thirteen studies were included. Five major themes emerged: (1) pediatric palliative care services delivery and care coordination, (2) emotional, psychological, and spiritual support, (3) end-of-life care and bereavement support, (4) practical and daily living support, and (5) communication and information. Parents reported unmet needs in multiple dimensions and wished for more support in caring for their children.
Conclusion:
Given that all of the unmet needs align with already established pediatric palliative care standards, this review highlights the need for revised health care policies and practices that will lead to better implementation of these standards in practice.
Arias LópezMDP, FernándezAL, FiquepronK, et al.; SATI-Q Pediatric Group. Prevalence of children with complex chronic conditions in PICUs of Argentina: A Prospective Multicenter Study. Pediatr Crit Care Med, 2020; 21(3):e143–e151; doi: 10.1097/pcc.0000000000002223
2.
Penela-SánchezD, RicartS, VidiellaN, et al.A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period. An Pediatr (Engl Ed), 2021; 95(4):233–239; doi: 10.1016/j.anpede.2020.07.022
3.
DombrechtL, LacerdaA, WolfeJ, et al.A call to improve paediatric palliative care quality through research. BMC Palliat Care, 2023; 22(1):141; doi: 10.1186/s12904-023-01262-w
4.
FriedelM, AujoulatI, BrichardB, et al.The quality of life of children facing life-limiting conditions and that of their parents in Belgium: A cross-sectional study. Children (Basel), 2023; 10(7):1167.
5.
KittelsenTB, LorentsenVB, CastorC, et al.It’s about living a normal life: Parents’ quality of life when their child has a life-threatening or life-limiting condition-a qualitative study. BMC Palliat Care, 2024; 23(1):92.
6.
Peterson-CarmichaelSL, CheifetzIM. The chronically critically ill patient: Pediatric considerations. Respir Care, 2012; 57(6):993–1003.
7.
World Health Organization. Palliative care for children. WHO; 2023.
GundryA, ElvidgeN, DonovanL, et al.Parent and provider perspectives of a hospital-based bereavement support program in pediatric palliative care. J Pain Symptom Manage, 2023; 65(5):388–399.e9; doi: 10.1016/j.jpainsymman.2023.02.002
ClevelandRW, UllrichC, SlingsbyB, et al.Children at the intersection of pediatric palliative care and child maltreatment: A vulnerable and understudied population. J Pain Symptom Manage, 2021; 62(1):91–97; doi: 10.1016/j.jpainsymman.2020.11.007
12.
CollinsA, BurchellJ, RemediosC, et al.Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes. Palliat Med, 2020; 34(3):358–366; doi: 10.1177/0269216319892825
13.
RemediosC, WillenbergL, ZordanR, et al.A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliat Med, 2015; 29(3):223–230; doi: 10.1177/0269216314560008
14.
van WarmerdamJ, ZabihV, KurdyakP, et al.Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta-analysis. Pediatr Blood Cancer, 2019; 66(6):e27677; doi: 10.1002/pbc.27677
15.
WenC-C, ChuS-Y. Parenting stress and depressive symptoms in the family caregivers of children with genetic or rare diseases: The mediation effects of coping strategies and self-esteem. Tzu Chi Med J, 2020; 32(2):181–185; doi: 10.4103/tcmj.tcmj_35_19
16.
SpurrS, BallyJ, BurlesM, et al.A investigation into hope, self-efficacy, distress and uncertainty in parents who have a child with a life-threatening or life-limiting illness. J Pediatr Nurs, 2022; 66:e9–e15; doi: 10.1016/j.pedn.2022.07.002
17.
TaibF, BengKT, ChanLC. The challenges, coping mechanisms, and the needs of the inhospital parents caring for children with life-limiting neurological disorders: A qualitative study. Indian J Palliat Care, 2021; 27(4):483–489; doi: 10.25259/IJPC_3_21
18.
VerberneLM, KarsMC, Schouten-van MeeterenAYN, et al.Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study. Eur J Pediatr, 2019; 178(7):1075–1085; doi: 10.1007/s00431-019-03393-w
19.
VerberneLM, Schouten-van MeeterenAY, BosmanDK, et al.Parental experiences with a paediatric palliative care team: A qualitative study. Palliat Med, 2017; 31(10):956–963; doi: 10.1177/0269216317692682
20.
ZimmermannK, BergstraesserE, EngbergS, et al.; on behalf of the PELICAN Consortium. 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 Palliat Care, 2016; 15(1):30; doi: 10.1186/s12904-016-0098-3
21.
Cho-HeeK, Min-SunK, Yi-JiM, et al.Content analysis of multifaceted needs for improving the quality of pediatric palliative care among parents of children with life-threatening conditions. J Hosp Palliat Nurs, 2022; 24(6):E311; doi: 10.1097/njh.0000000000000908
22.
PurianiD, AllenidekaniaA, AfiyantiY. The experience of uncertainty in mothers caring for children at home after palliative heart surgery. Indian J Palliat Care, 2023; 29(1):46–50; doi: 10.25259/IJPC_453_20
23.
AounSM, StegmannR, DeleuilR, et al.“It Is a Whole Different Life from the Life I Used to Live”: Assessing parents’ support needs in paediatric palliative care. Children (Basel), 2022; 9(3):322; doi: 10.3390/children9030322
24.
MonterossoL, KristjansonL, PhillipsM. The supportive and palliative care needs of Australian families of children who die from cancer. Palliat Med, 2009; 23(6):526–536; doi: 10.1177/0269216309104060
25.
CollinsA, Hennessy-AndersonN, HoskingS, et al.Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliat Med, 2016; 30(10):950–959; doi: 10.1177/0269216316634245
26.
InglinS, HornungR, BergstraesserE. Palliative care for children and adolescents in Switzerland: A needs analysis across three diagnostic groups. Eur J Pediatr, 2011; 170(8):1031–1038.
27.
BronsemaA, TheißenT, OechsleK, et al.Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective. BMC Palliat Care, 2022; 21(1):87–18; doi: 10.1186/s12904-022-00971-y
28.
CoadJ, KaurJ, AshleyN, et al.Exploring the perceived met and unmet need of life-limited children, young people and families. J Pediatr Nurs, 2015; 30(1):45–53; doi: 10.1016/j.pedn.2014.09.007
29.
FeudtnerC, RosenbergAR, BossRD, et al.Challenges and priorities for pediatric palliative care research in the U.S. and similar practice settings: Report from a pediatric palliative care research network workshop. J Pain Symptom Manage, 2019; 58(5):909–917.e3; doi: 10.1016/j.jpainsymman.2019.08.011
30.
PageMJ, McKenzieJE, BossuytPM, et al.The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. Bmj, 2021; 372:n71; doi: 10.1136/bmj.n71
31.
Australian Institute of Health and Welfare. Palliative care services in Australia. AIHW: Canberra; 2024.
32.
CarrascoJM, InbadasH, WhitelawA, et al.Early impact of the 2014 world health assembly resolution on palliative care: A qualitative study using semistructured interviews with key experts. J Palliat Med, 2021; 24(1):103–106; doi: 10.1089/jpm.2019.0384
33.
BabineauJ. Product review: Covidence (systematic review software). J Can Health Libr Assoc, 2014; 35(2):68–71.
34.
LongHA, FrenchDP, BrooksJM. Optimising the value of the critical appraisal skills programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Re Methods Med Health Sci, 2020; 1(1):31–42; doi: 10.1177/2632084320947559
35.
NoyesJ, BoothA, CargoM, et al.Qualitative evidence. In: Cochrane handbook for systematic reviews of interventions. Cochrane Collaboration; 2019, pp. 525–545.
36.
KruegerRA. Focus groups: A practical guide for applied research. Sage: 2014.
37.
BeechamE, OostendorpL, CrockerJ, et al.Keeping all options open: Parents’ approaches to advance care planning. Health Expect, 2017; 20(4):675–684; doi: 10.1111/hex.12500
38.
BrouwerM, MaeckelbergheELM, van der HeideA, et al.Barriers in care for children with life-threatening conditions: A qualitative interview study in the Netherlands. BMJ Open, 2020; 10(6):e035863; doi: 10.1136/bmjopen-2019-035863
39.
EnglerJ, GruberD, EnglerF, et al.Parents’ perspectives on hospital care for children and adolescents with life-limiting conditions: A grounded theory analysis of narrative interviews. J Palliat Med, 2020; 23(4):466–474; doi: 10.1089/jpm.2019.0245
40.
EskolaK, BergstraesserE, ZimmermannK, et al.Maintaining family life balance while facing a child’s imminent death—A mixed methods study. J Adv Nurs, 2017; 73(10):2462–2472; doi: 10.1111/jan.13304
41.
GurkováE, AndraščíkováI, ČápJ. Parents’ experience with a dying child with cancer in palliative care. Cent Eur J Nurs Midw, 2015; 6(1):201–208; doi: 10.15452/cejnm.2015.06.0004
42.
LotzJD, DaxerM, JoxRJ, et al.“Hope for the best, prepare for the worst”: A qualitative interview study on parents’ needs and fears in pediatric advance care planning. Palliat Med, 2017; 31(8):764–771; doi: 10.1177/0269216316679913
43.
McNamaraLC, OkoniewskiW, MaurerSH, et al.“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine. J Relig Health, 2020; 59(6):2899–2917; doi: 10.1007/s10943-020-00991-z
44.
NeilsonSJ, GibsonF, GreenfieldSM. Pediatric oncology palliative care: Experiences of general practitioners and bereaved parents. J Palliat Care Med, 2015; 5(2):214; doi: 10.4172/2165-7386.1000214
45.
RudSA, SkagestadE, Aasebø HaukenM. Parents’ experiences of paediatric palliative care in the community healthcare system: A qualitative study. Palliat Care Soc Pract, 2023; 17; doi: 10.1177/26323524231193036
46.
Together for Short Lives. A Guide to Children’s Palliative Care. Bristol, England; 2018.
47.
National Institute for Health and Care Excellence. End of life care for infants, children and young people with life-limiting conditions: planning and management. National Institute for Health and Care Excellence; 2019.
48.
ConstantinouG, GarciaR, CookE, et al.Children’s unmet palliative care needs: A scoping review of parents’ perspectives. BMJ Support Palliat Care, 2019; 9(4):439–450; doi: 10.1136/bmjspcare-2018-001705
49.
GillFJ, HashemZ, StegmannR, et al.The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review. Palliat Med, 2021; 35(1):76–96; doi: 10.1177/0269216320967593
50.
NeuburgL. Early initiation of pediatric palliative care. J Pediatr Health Care, 2021; 35(1):114–119; doi: 10.1016/j.pedhc.2020.05.006
51.
WeaverMS, RosenbergAR, FryA, et al.Impact of the coronavirus pandemic on pediatric palliative care team structures, services, and care delivery. J Palliat Med, 2021; 24(8):1213–1220; doi: 10.1089/jpm.2020.0589
52.
Williams-ReadeJ, LamsonAL, KnightSM, et al.Paediatric palliative care: A review of needs, obstacles and the future. J Nurs Manag, 2015; 23(1):4–14; doi: 10.1111/jonm.12095
53.
ZimmermannK, Marfurt-RussenbergerK, CignaccoE, et al.Bereaved parents’ perspectives on their child’s end-of-life care: Connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. BMC Palliat Care, 2022; 21(1):66; doi: 10.1186/s12904-022-00957-w
54.
HaggertyJL, ReidRJ, FreemanGK, et al.Continuity of care: A multidisciplinary review. BMJ, 2003; 327(7425):1219–1221; doi: 10.1136/bmj.327.7425.1219
55.
ZanelloE, CalugiS, RucciP, et al.Continuity of care in children with special healthcare needs: A qualitative study of family’s perspectives. Ital J Pediatr, 2015; 41(1):7; doi: 10.1186/s13052-015-0114-x
56.
MillerAR, CondinCJ, McKellinWH, et al.Continuity of care for children with complex chronic health conditions: Parents’ perspectives. BMC Health Serv Res, 2009; 9(1):242; doi: 10.1186/1472-6963-9-242
57.
CarosellaA, SnyderA, WardE. What parents of children with complex medical conditions want their child’s physicians to understand. JAMA Pediatr, 2018; 172(4):315–316; doi: 10.1001/jamapediatrics.2017.3931
58.
KochKD, JonesBL. Supporting parent caregivers of children with life-limiting illness. Children (Basel), 2018; 5(7):85.
59.
KuoDZ, RobbinsJM, LyleRE, et al.Parent-reported outcomes of comprehensive care for children with medical complexity. Fam Syst Health, 2013; 31(2):132–141; doi: 10.1037/a0032341
60.
National Institute for Health and Care Excellence. End of life care for infants, children and young people: Quality Standard. National Institute for Health and Care Excellence; 2017.
61.
HamiltonLJ, LernerCF, PressonAP, et al.Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population. Matern Child Health J, 2013; 17(3):463–469; doi: 10.1007/s10995-012-1018-7
62.
KuoDZ, CohenE, AgrawalR, et al.A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med, 2011; 165(11):1020–1026; doi: 10.1001/archpediatrics.2011.172
63.
LawsonKA, BloomSR, SadofM, et al.Care coordination for children with special health care needs: Evaluation of a state experiment. Matern Child Health J, 2011; 15(7):993–1000; doi: 10.1007/s10995-010-0660-1
64.
MaynardL, LynnD. Development of a logic model to support a network approach in delivering 24/7 children’s palliative care: Part one. Int J Palliat Nurs, 2016; 22(4):176–184; doi: 10.12968/ijpn.2016.22.4.176
65.
AounSM, GillFJ, PhillipsMB, et al.The profile and support needs of parents in paediatric palliative care: Comparing cancer and non-cancer groups. Palliat Care Soc Pract, 2020; 14:2632352420958000; doi: 10.1177/2632352420958000
66.
SchoonoverKL, ProkopL, LapidMI. Valuable informal bereavement support strategies for bereaved parents of stillborn, young children, and adult children: A scoping review. J Palliat Care, 2022; 37(3):381–400; doi: 10.1177/08258597211062762
67.
SchützeD, EnglerF, PloegerC, et al.Specialised outpatient paediatric palliative care team–parent collaboration: Narrative interviews with parents. BMJ Support Palliat Care, 2022; 12(e5):e664–e670; doi: 10.1136/bmjspcare-2020-002576
68.
TanAJN, TiewLH, ShoreyS. Experiences and needs of parents of palliative paediatric oncology patients: A meta-synthesis. Eur J Cancer Care (Engl), 2021; 30(3):e13388; doi: 10.1111/ecc.13388
69.
WeaverMS, HeinzeKE, BellCJ, et al.; Pediatric Palliative Care Special Interest Group at Children’s National Health System. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med, 2016; 30(3):212–223; doi: 10.1177/0269216315583446
70.
NagelhoutES, LinderLA, AustinT, et al.Social media use among parents and caregivers of children with cancer. J Pediatr Oncol Nurs, 2018; 35(6):399–405; doi: 10.1177/1043454218795091
71.
NewmanK, WangAH, WangAZY, et al.The role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers: A scoping review. BMC Public Health, 2019; 19(1):1495; doi: 10.1186/s12889-019-7837-3
72.
WingerA, KvarmeLG, LøylandB, et al.Family experiences with palliative care for children at home: A systematic literature review. BMC Palliat Care, 2020; 19(1):165; doi: 10.1186/s12904-020-00672-4
73.
LingJ, PayneS, ConnaireK, et al.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 Dev, 2016; 42(1):51–59; doi: 10.1111/cch.12300
74.
PelentsovLJ, LawsTA, EstermanAJ. The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disabil Health J, 2015; 8(4):475–491; doi: 10.1016/j.dhjo.2015.03.009
75.
HilarioR, CosmeM, BarzolaI, et al.Development and implementation of educational material by nurses for parents/caregivers of children with cancer: A peruvian national study. J Pediatr Hematol Oncol Nurs, 2023; 40(5):356–363; doi: 10.1177/27527530231198202
76.
TanCE, LauSCD, Abdul LatiffZ, et al.Parents of children with cancer require health literacy support to meet their information needs. Health Info Libr J, 2024; 41(3):267–282; doi: 10.1111/hir.12491
