Advertisement

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

  • Eve NamisangoEmail author
  • Katherine Bristowe
  • Matthew J. Allsop
  • Fliss E. M. Murtagh
  • Melanie Abas
  • Irene J. Higginson
  • Julia Downing
  • Richard Harding
Systematic Review

Abstract

Background

The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.

Objective

This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.

Method

This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.

Results

Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.

Conclusion

Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.

Notes

Acknowledgements

The authors extend sincere thanks to Denise Bradley, St Christopher’s Hospice, UK, for her support towards developing the search strategy. A note of thanks is extended to Simon Etkind, Cicely Saunders Institute King’s College London, UK, for the useful comments on the health outcomes framework and the manuscript. Thanks also to Melanie Merriman, Moses Bateganya, and Chang Victor for the useful comments on the manuscript.

Author contributions

EN conceptualized and designed the study, reviewed the literature, abstracted and analyzed the data, and drafted the initial manuscript. Professor RH, Professor FMM, and Dr. KB reviewed the protocol, data abstraction tools, data analysis framework, and the results. Professor IJH and Dr. MA reviewed the research questions, search strategy, and review findings. Dr. MA reviewed the protocol, abstracted data, and carried out data analysis in association with the lead reviewer. Professor JD reviewed the analysis framework and appraised the interpretation of the review findings. All authors contributed to the final manuscript.

Compliance with Ethical Standards

Conflicts of interest

Eve Namisango, Katherine Bristowe, Matthew J Allsop, Fliss EM Murtagh, Melanie Abas, Irene J Higginson, Julia Downing, Richard Harding have no conflicts of interest.

Funding

The authors thank the Open Society Foundation, which funded this review through an unrestricted grant.

Data availability statement

The data extraction table used to compile all details from included studies accompanies this article as a supplementary file. EndNote files used for compiling articles during searching and reviewing can be requested from the corresponding author with a reasonable request outlining the intention for their use.

Supplementary material

40271_2018_333_MOESM1_ESM.docx (49 kb)
Supplementary material 1 (DOCX 48 kb)

References

  1. 1.
    Fraser LK, Miller M, Hain R, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–9.Google Scholar
  2. 2.
    Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010;126(4):638–46.Google Scholar
  3. 3.
    Downing J, Birtar D, Chambers L, Gelb B, Drake R, Kiman R. Children’s palliative care: a global concern. Int J Palliat Nurs. 2012;18(3):109–14.Google Scholar
  4. 4.
    Connor SR, Downing J, Marston J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manage. 2017;53(2):171–7.Google Scholar
  5. 5.
    Fraser LK, Miller M, Hain R, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):2011–846.Google Scholar
  6. 6.
    Pfund R, Fowler-Kerry S. Perspectives on palliative care for children and young people: a global discourse. Oxford: Radcliffe Publishing Ltd; 2010.Google Scholar
  7. 7.
    World Health Organization. Progress report 2016: prevent HIV, test and treat all: WHO support for country impact. World Health Organization; 2016. http://www.who.int/iris/handle/10665/251713
  8. 8.
    World Bank. World Bank Country and Lending Groups (2012). https://datahelpdesk.worldbank.org/knowledgebase/articles/906519-world-bank-country-and-lending-groups. Accessed 1 Aug 2018.
  9. 9.
    Connor SJ, Sisimayi C, Garanganga E, Ikin B, Ali Z. Assessment of the need for palliative care for children three country report: South Africa, Kenya and Zimbabwe; 2013. http://www.icpcn.org/wp-content/uploads/2013/11/Assessment-of-the-Need-for-Palliative-Care-for-Children.-Three-Country-Report-South-Africa-Kenya-and-Zimbabawe.pdf. Accessed 1 Aug 2018.
  10. 10.
    International Agency for Research on Cancer, World Cancer Report (2014). http://publications.iarc.fr/Non-Series-Publications/World-Cancer-Reports/World-Cancer-Report-2014. Accessed 1 Aug 2018.
  11. 11.
    Israels T, Kambugu J, Kouya F, et al. Clinical trials to improve childhood cancer care and survival in sub-Saharan Africa. Nat Rev Clin Oncol. 2013;10(10):599–604.Google Scholar
  12. 12.
    Beecham E, Hudson BF, Oostendorp L, et al. A call for increased paediatric palliative care research: identifying barriers. Palliat Med. 2016;30(10):979–80.Google Scholar
  13. 13.
    Johnston EE, Rosenberg AR, Kamal AH. Pediatric-specific end-of-life care quality measures: an unmet need of a vulnerable population. J Oncol Pract. 2017;13(10):e874–80.Google Scholar
  14. 14.
    Mangione-Smith R. The challenges of addressing pediatric quality measurement gaps. Pediatrics. 2017;139(4):e20170174.Google Scholar
  15. 15.
    Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE. Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use. Palliat Med. 2016;31:0269216316649155.Google Scholar
  16. 16.
    Hearn J, Higginson IJ. Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med. 1997;19(2):193–9.Google Scholar
  17. 17.
    de Wit M, Abma T, Koelewijn-van Loon MS, Collins SN, Kirwan JF. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013.  https://doi.org/10.1136/bmjopen-2012-002241 Google Scholar
  18. 18.
    Ruland CM, Hamilton GA, Schjodt-Osmo B. The complexity of symptoms and problems experienced in children with cancer: a review of the literature. J Pain Symptom Manage. 2009;37(3):403–18.Google Scholar
  19. 19.
    Morris C, Janssens A, Shilling V, et al. Meaningful health outcomes for paediatric neurodisability:stakeholder prioritisation and appropriateness of patient reported outcome measures. Health Qual Life Outcomes. 2015;13:87.Google Scholar
  20. 20.
    Addington-Hall J. Research sensitivities to palliative care patients. Eur J Cancer Care (Engl). 2002;11(3):220–4.Google Scholar
  21. 21.
    Steele R, Cadell S, Siden H, Andrews G, Smit Quosai T, Feichtinger L. Impact of research participation on parents of seriously ill children. J Palliat Med. 2014;17(7):788–96.Google Scholar
  22. 22.
    Clark A. Young children as protagonists and the role of participatory, visual methods in engaging multiple perspectives. Am J Community Psychol. 2010;46(1–2):115–23.Google Scholar
  23. 23.
    Evan EE, Calonico BSE, Tan BSJ, Zeltzer LK. A qualitative approach to understanding quality of life in pediatric palliative care. J Palliat Care Med. 2012;S1:005.  https://doi.org/10.4172/2165-7386.S1-005.Google Scholar
  24. 24.
    Wolfe J, Orellana L, Ullrich C, et al. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST Study. J Clin Oncol. 2015;33(17):1928–30.Google Scholar
  25. 25.
    Dupuis LL, Ethier MC, Tomlinson D, Hesser T, Sung L. A systematic review of symptom assessment scales in children with cancer. BMC Cancer. 2012;12:430.Google Scholar
  26. 26.
    Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.[Erratum appears in Int J Surg. 2010;8(8):658]. Int J Surg. 2010;8(5):336–41.Google Scholar
  27. 27.
    System for Information on Grey Literature in Europe. http://www.opengrey.eu. Accessed 20 Aug 2018.
  28. 28.
    Hawker S, Payne S, Kerr C, Hardey M, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002;12(9):1284–99.Google Scholar
  29. 29.
    Vandenbroucke JP, von Elm E, Altman DG, et al. Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): explanation and elaboration. Int J Surg. 2014;12(12):1500–24.Google Scholar
  30. 30.
    Terwee CB, Bot SD, de Boer MR, et al. Quality Criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60:34–42.Google Scholar
  31. 31.
    Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53.Google Scholar
  32. 32.
    Sandelowski M, Voils CI, Barroso J. Defining and designing mixed research synthesis studies. Res Schools. 2006;13(1):29.Google Scholar
  33. 33.
    Matza LS, Patrick DL, Riley AW, et al. Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health. 2013;16(4):461–79.Google Scholar
  34. 34.
    Arbuckle R, Abetz-Webb L. “Not Just Little Adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Patient Patient Center Outcomes Res. 2013;6(3):143–59.Google Scholar
  35. 35.
    Solomon GE, Cassimatis NL. On facts and conceptual systems: young children’s integration of their understandings of germs and contagion. Dev Psychol. 1999;35(1):113–26.Google Scholar
  36. 36.
    World Health Organisation. WHO definition of palliative care. 2002. http://www.who.int/cancer/palliative/definition/en/. Accessed 20 Aug 2018.
  37. 37.
    World Health Organization (‎2007). International classification of functioning, disability and health: children and youth version: ICF-CY. World Health Organization. http://www.who.int/iris/handle/10665/43737. Accessed 1 Aug 2018.
  38. 38.
    http://www.nihpromis.org/documents. Accessed 20 Aug 2018.
  39. 39.
    Anthony SJ, Dix D, Klaassen R, Scheinemann K, Sung L, Klassen A. Important factors to understanding quality of life according to children with cancer and childhood cancer survivors. Pediatr Blood Cancer. 2012;59(6):1120.Google Scholar
  40. 40.
    Donnelly JP, Huff SM, Lindsey ML, McMahon KA, Schumacher J. The needs of children with life-limiting conditions: a healthcare-provider-based model. Am J Hospice Palliat Med. 2005;22(4):259–67.Google Scholar
  41. 41.
    Wolfe J, Orellana L, Cook EF, et al. Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. J Clin Oncol. 2014;32(11):1119–26.Google Scholar
  42. 42.
    Soanes L, Hargrave D, Smith L, Gibson F. What are the experiences of the child with a brain tumour and their parents? Eur J Oncol Nurs. 2009;13(4):255–61.Google Scholar
  43. 43.
    Petersen C, Schmidt S, Power M, Bullinger M, Grp D. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res. 2005;14(4):1065–77.Google Scholar
  44. 44.
    Beaune L, Forrest CR, Keith T. Adolescents’ perspectives on living and growing up with Treacher Collins syndrome: a qualitative study. Cleft Palate Craniofac J. 2004;41(4):343–50.Google Scholar
  45. 45.
    Collins JJ. Palliative care and the child with cancer. Hematol Oncol Clin N Am. 2002;16(3):657– + .Google Scholar
  46. 46.
    Woodgate RL. Feeling statesa new approach to understanding how children and adolescents with cancer experience symptoms. Cancer Nurs. 2008;31(3):229–38.Google Scholar
  47. 47.
    Darcy L, Knutsson S, Huus K, Enskar K. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children’s and parent’s perspectives. Cancer Nurs. 2014;37(6):445–56.Google Scholar
  48. 48.
    Woodgate RL, Degner LF. A substantive theory of Keeping the Spirit Alive: the Spirit Within children with cancer and their families. J Pediatr Oncol Nurs. 2003;20(3):103–19.Google Scholar
  49. 49.
    Woodgate RL, West CH, Tailor K. Existential anxiety and growth an exploration of computerized drawings and perspectives of children and adolescents with cancer. Cancer Nurs. 2014;37(2):146–59.Google Scholar
  50. 50.
    Ronen GM, Rosenbaum P, Law M, Streiner DL. Health-related quality of life in childhood disorders: a modified focus group technique to involve children. Qual Life Res. 2001;10(1):71–9.Google Scholar
  51. 51.
    Avoine-Blondin J, Lahaye M, Parent V, Duval M, Humbert N, Sultan S. Quality of life of children with cancer treated with palliative care: a qualitative study on professionals’ perceptions. Pediatr Blood Cancer. 2014;61:S388.Google Scholar
  52. 52.
    Barrera M, Schulte F, Bartels U, et al. A randomized control trial to evaluate the efficacy of a group social skills intervention for childhood survivors of brain tumours. Neuro-Oncology. 2012;14:i138.Google Scholar
  53. 53.
    Barnes MJ, Pressey J, Adams J, Hensler MA, Madan-Swain A. Physician and nurse beliefs of phase 1 trials in pediatric oncology. Cancer Nurs. 2014;37(5):E48–52.Google Scholar
  54. 54.
    Weaver MS, Heinze KE, Bell CJ, et al. Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. Palliat Med. 2016;30(3):212–23.Google Scholar
  55. 55.
    Zelcer S, Cataudella D, Cairney AE, Bannister SL. Palliative care of children with brain tumors: a parental perspective. Arch Pediatr Adolesc Med. 2010;164(3):225–30.Google Scholar
  56. 56.
    Hongo T, Watanabe C, Okada S, et al. Analysis of the circumstances at the end of life in children with cancer: symptoms, suffering and acceptance. Pediatr Int. 2003;45(1):60–4.Google Scholar
  57. 57.
    Khadra C, Le May S, Tremblay I, et al. Development of the adolescent cancer suffering scale. Pain Res Manage. 2015;20(4):213–9.Google Scholar
  58. 58.
    Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME. Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer. Pediatr Blood Cancer. 2015;62(4):710–4.Google Scholar
  59. 59.
    Oberholzer AE, Nel E, Myburgh CPH, Poggenpoel M. Exploring the needs and resources of children in a haematology-oncology unit. Health SA Gesondheid (Online). 2011;16(1):1–12.Google Scholar
  60. 60.
    Wise BV. In their own words: the lived experience of pediatric liver transplantation. Qual Health Res. 2002;12(1):74–90.Google Scholar
  61. 61.
    Hendricks-Ferguson V. Physical symptoms of children receiving pediatric hospice care at home during the last week of life. Oncol Nurs Forum. 2008;35(6):E108–15.Google Scholar
  62. 62.
    Drake R, Frost J, Collins JJ. The symptoms of dying children. J Pain Symptom Manage. 2003;26(1):594–603.Google Scholar
  63. 63.
    Montoya-Juarez R, Garcia-Caro MP, Schmidt-Rio-Valle J, et al. Suffering indicators in terminally ill children from the parental perspective. Eur J Oncol Nurs. 2013;17(6):720–5.Google Scholar
  64. 64.
    Ljungman G, Gordh T, Sorensen S, Kreuger A. Pain in paediatric oncology: interviews with children, adolescents and their parents. Acta Paediatr. 1999;88(6):623–30.Google Scholar
  65. 65.
    Poder U, Ljungman G, von Essen L. Parents’ perceptions of their children’s cancer-related symptoms during treatment: a prospective, longitudinal study. J Pain Symptom Manage. 2010;40(5):661–70.Google Scholar
  66. 66.
    Jalmsell L, Kreicbergs U, Onelov E, Steineck G, Henter J-I. Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics. 2006;117(4):1314–20.Google Scholar
  67. 67.
    Theunissen JMJ, Hoogerbrugge PM, van Achterberg T, Prins JB, Vernooij-Dassen MJFJ, van den Ende CHM. Symptoms in the palliative phase of children with cancer. Pediatr Blood Cancer. 2007;49(2):160–5.Google Scholar
  68. 68.
    Cheatham SLH. Neurodevelopmental outcomes in infants with hypoplastic left heart syndrome after Hybrid Stage I palliation. Dissertation Abstracts International: Section B: The Sciences and Engineering 2013; 74(5-B(E)): No Pagination Specified.Google Scholar
  69. 69.
    Edwards KE, Neville BA, Cook EF Jr, Aldridge SH, Dussel V, Wolfe J. Understanding of prognosis and goals of care among couples whose child died of cancer. J Clin Oncol. 2008;26(8):1310–5.Google Scholar
  70. 70.
    Goldman A. ABC of palliative care, Special problems of children. BMJ. 1998;316(7124):49–52.Google Scholar
  71. 71.
    Olagunju AT, Sarimiye FO, Olagunju TO, Habeebu MY, Aina OF. Child’s symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care. Ann Palliat Med. 2016;5(3):157–65.Google Scholar
  72. 72.
    Enskar K, Carlsson M, Golsater M, Hamrin E, Kreuger A. Life situation and problems as reported by children with cancer and their parents. J Pediatr Oncol Nursi. 1997;14(1):18–26.Google Scholar
  73. 73.
    Bjork M, Nordstrom B, Hallstrom I. Needs of young children with cancer during their initial hospitalization: an observational study. J Pediatr Oncol Nursi. 2006;23(4):210–9.Google Scholar
  74. 74.
    Goldman A, Hewitt M, Collins GS, Childs M, Hain R. Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum Survey. Pediatrics. 2006;117(6):e1179–86.Google Scholar
  75. 75.
    Macartney G, VanDenKerkhof E, Harrison MB, Stacey D. Symptom experience and quality of life in pediatric brain tumor survivors: a cross-sectional study. J Pain Symptom Manage. 2014;48(5):957–67.Google Scholar
  76. 76.
    Garvie PA, He J, Wang J, D’Angelo LJ, Lyon ME. An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families. J Pain Symptom Manag. 2012;44(3):373–85.e29.Google Scholar
  77. 77.
    Allard A, Fellowes A, Shilling V, Janssens A, Beresford B, Morris C. Key health outcomes for children and young people with neurodisability: qualitative research with young people and parents. BMJ Open. 2014;4(4):e004611.Google Scholar
  78. 78.
    Beattie PE, Lewis-Jones MS. A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases. Br J Dermatol. 2006;155(1):145–51.Google Scholar
  79. 79.
    Veldhuijzen van Zanten SEM, van Meerwijk CLLI, Jansen MHA, et al. Palliative and end-of-life care for children with diffuse intrinsic pontine glioma: results from a London cohort study and international survey. Neuro-Oncology. 2016;18(4):582–8.Google Scholar
  80. 80.
    Nakawesi J, Kasirye I, Kavuma D, et al. Palliative care needs of HIV exposed and infected childrenadmitted to the inpatient paediatric unit in Uganda. Ecancermedicalscience. 2014;8:489.Google Scholar
  81. 81.
    Dupuis LL, Milne-Wren C, Cassidy M, et al. Symptom assessment in children receiving cancer therapy: the parents’ perspective. Support Care Cancer. 2010;18(3):281–99.Google Scholar
  82. 82.
    Weaver MS, Baker JN, Gattuso JS, Gibson DV, Sykes AD, Hinds PS. Adolescents’ preferences for treatment decisional involvement during their cancer. Cancer. 2015;121(24):4416–24.Google Scholar
  83. 83.
    Yeh CH, Wang CH, Chiang YC, Lin L, Chien LC. Assessment of symptoms reported by 10- to 18-year-old cancer patients in Taiwan. J Pain Symptom Manage. 2009;38(5):738–46.Google Scholar
  84. 84.
    Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol. 2005;23(36):9146–54.Google Scholar
  85. 85.
    Downing J, Jassal SS, Mathews L, Brits H, Friedrichsdorf SJ. Pediatric pain management in palliativecare. Pain Manag. 2015;5(1):23–35.Google Scholar
  86. 86.
    Enskar K, Carlson M, Harmin E, Kreuger A. Swedish health care personnel’s perceptions of disease and treatment- related problems experienced by children with cancer and their families. J Pediatr Oncol Nurs. 1996;13(2):61–70.Google Scholar
  87. 87.
    Hedstrom M, Haglund K, Skolin I, von Essen L. Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs. 2003;20(3):120–32.Google Scholar
  88. 88.
    Balkin EM, Wolfe J, Ziniel SI, et al. Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. J Palliat Med. 2015;18(4):318–23.Google Scholar
  89. 89.
    Ananth P, Melvin P, Feudtner C, Wolfe J, Berry JG. Hospital use in the last year of life for children with life-threatening complex chronic conditions. Pediatrics. 2015;136(5):938–46.Google Scholar
  90. 90.
    Hesseling PB, Molyneux E, Tchintseme F, et al. Treating Burkitt’s lymphoma in Malawi, Cameroon, and Ghana. Lancet Oncology. 2008;9(6):512–3.Google Scholar
  91. 91.
    Momani TG, Mandrell BN, Gattuso JS, West NK, Taylor SL, Hinds PS. Children’s perspective on health-related quality of life during active treatment for acute lymphoblastic leukemia: an advanced content analysis approach. Cancer Nurs. 2015;38(1):49–58.Google Scholar
  92. 92.
    Ito Y, Okuyama T, Kamei M, et al. Good death for children with cancer: a qualitative study. Jpn J Clin Oncol. 2015;45(4):349–55.Google Scholar
  93. 93.
    Barrera M, D’Agostino N, Gammon J, Spencer L, Baruchel S. Health-related quality of life and enrollment in phase 1 trials in children with incurable cancer. Palliat Supp Care. 2005;3(3):191–6.Google Scholar
  94. 94.
    Ronen GM, Rosenbaum P, Law M, Streiner DL. Health-related quality of life in childhood epilepsy: the results of children’s participation in identifying the components. Dev Med Child Neurol. 1999;41(8):554–9.Google Scholar
  95. 95.
    McHugh G, Rylance J, Mujuru H, et al. Chronic Morbidity Among Older Children and Adolescents at Diagnosis of HIV Infection. J Acquir Immune Deficiency Syndromes (1999). 2016;73(3):275–81.Google Scholar
  96. 96.
    Lavy V. Presenting symptoms and signs in children referred for palliative care in Malawi. Palliat Med. 2007;21(4):333–9.Google Scholar
  97. 97.
    Nicholas DB, Picone G, Selkirk EK. The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res. 2011;21(2):162–73.Google Scholar
  98. 98.
    Janssens A, Williams J, Tomlinson R, Logan S, Morris C. Health outcomes for children with neurodisability: what do professionals regard as primary targets? Arch Dis Child. 2014;99(10):927–32.Google Scholar
  99. 99.
    Allen DA, Affleck G, Tennen H, McGrade BJ, Ratzan S. Concerns of children with a chronic illness: a cognitive-developmental study of juvenile diabetes. Child Care Health Dev. 1984;10(4):211–8.Google Scholar
  100. 100.
    Woodgate RL, Degner LF, Yanofsky R. A different perspective to approaching cancer symptoms in children. J Pain Symptom Manage. 2003;26(3):800–17.Google Scholar
  101. 101.
    Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res. 1998;7(5):399–407.Google Scholar
  102. 102.
    Punpanich W, Gorbach PM, Detels R. Impact of paediatric human immunodeficiency virus infection on children’s and caregivers’ daily functioning and well-being: a qualitative study. Child Care Health Dev. 2012;38(5):714–22.Google Scholar
  103. 103.
    Freeman K, O’Dell C, Meola C. Childhood brain tumors: children’s and siblings’ concerns regarding the diagnosis and phase of illness. J Pediatr Oncol Nurs. 2003;20(3):133–40.Google Scholar
  104. 104.
    Lau BD, Aslakson RA, Wilson RF, et al. Methods for improving the quality of palliative care delivery: a systematic review. Am J Hospice Palliat Med. 2014;31(2):202–10.Google Scholar
  105. 105.
    Avoine-Blondin J, Parent V, Lahaye M, Humbert N, Duval M, Sultan S. Identifying domains of quality of life in children with cancer undergoing palliative care: a qualitative study with professionals. Palliat Support Care. 2017;15(5):565–74.Google Scholar
  106. 106.
    Forrester AB, Barton-Gooden A, Pitter C, Lindo JL. The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica. Int J Qual Stud Health Well-being. 2015;10:28104.Google Scholar
  107. 107.
    Kamper R, Van Cleve L, Savedra M. Children with advanced cancer: responses to a spiritual quality of life interview. JSPN. 2010;15(4):301–6.Google Scholar
  108. 108.
    Li HCW, Chung OKJ, Chiu SY. The impact of cancer on children’s physical, emotional, and psychosocial well-being. Cancer Nurs. 2010;33(1):47–54.Google Scholar
  109. 109.
    Weaver MS, Reeve BB, Baker JN, et al. Concept-elicitation phase for the development of the pediatric patient-reported outcome version of the Common Terminology Criteria for Adverse Events. Cancer. 2016;122(1):141–8.Google Scholar
  110. 110.
    Garvie PA, He J, Wang J, D’Angelo LJ, Lyon ME. An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families. J Pain Symptom Manage. 2012;44(3):373–85.Google Scholar
  111. 111.
    Woodgate RL. A different way of being—Adolescents’ experiences with cancer. Cancer Nursing. 2005;28(1):8–15.Google Scholar
  112. 112.
    McClearly J, Kanesathasan A, Barakash J, et al. Foundation for future: meeting the pyschosocial needs of children living with HIV in South Africa and Uganda. J HIV/AIDS Soc Serv. 2013;12:49–62.Google Scholar
  113. 113.
    Taylor LK, Miller M, Joffe T, et al. Palliative care in Yorkshire, UK 1987–2008: survival and mortality in a hospice. Arch Dis Child. 2010;95(2):89–93.Google Scholar
  114. 114.
    Punpanich W, Detels R, Gorbach PM, Leowsrisook P. Understanding the psychosocial needs of HIV-infected children and families: a qualitative study. J Med Assoc Thailand = Chotmaihet thangphaet. 2008;91(Suppl 3):S76–84.Google Scholar
  115. 115.
    Fraser DFG. Strangers in their own land: friendship issues when children have cancer. J Res Spec Educ Needs. 2003;3(3):147–53.Google Scholar
  116. 116.
    Taylor RM, Franck LS, Dhawan A, Gibson F. The stories of young people living with a liver transplant. Qual Health Res. 2010;20(8):1076–90.Google Scholar
  117. 117.
    Einberg EL, Svedberg P, Enskar K, Nygren JM. Friendship relations from the perspective of children with experience of cancer treatment: a focus group study with a salutogenic approach. J Pediatr Oncol Nurs. 2015;32(3):153–64.Google Scholar
  118. 118.
    Cataudella DA, Zelcer S. Psychological experiences of children with brain tumors at end of life: parental perspectives. J Palliat Med. 2012;15(11):1191–7.Google Scholar
  119. 119.
    Hinds PS, Gattuso JS, Fletcher A, et al. Quality of life as conveyed by pediatric patients with cancer. Qual Life Res. 2004;13(4):761–72.Google Scholar
  120. 120.
    Griffiths M, Schweitzer R, Yates P. Childhood experiences of cancer: an interpretative phenomenological analysis approach. J Pediatr Oncol Nurs. 2011;28(2):83–92.Google Scholar
  121. 121.
    Woodgate RL, Degner LF. Expectations and beliefs about children’s cancer symptoms: perspectives of children with cancer and their families. Oncol Nurs Forum. 2003;30(3):479–91.Google Scholar
  122. 122.
    Ruhe KM, Badarau DO, Brazzola P, Hengartner H, Elger BS, Wangmo T. Participation in pediatric oncology: views of child and adolescent patients. Psychooncology. 2015;17(10).Google Scholar
  123. 123.
    Enskar K. Being an expert nurse in pediatric oncology care: nurses’ descriptions in narratives. J Pediatr Oncol Nurs. 2012;29(3):151–60.Google Scholar
  124. 124.
    Kuan GL, Low WY. Parents’ perspectives on the important aspects of care in children dying from life limiting conditions: a qualitative study. Med J Malaysia. 2015;70(5):295–9.Google Scholar
  125. 125.
    de Aquino AM, De Conti L, Pedrosa A. Construction of meanings about illness and death in the narratives of children with cancer. Psicologia: reflexao e Critica. 2014;27(3):599–606.Google Scholar
  126. 126.
    Stegenga K, Ward-Smith P. On receiving the diagnosis of cancer: the adolescent perspective. J Pediatr Oncol Nurs. 2009;26(2):75–80.Google Scholar
  127. 127.
    Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. Palliat Support Care. 2007;5(4):355–65.Google Scholar
  128. 128.
    Blume ED, Balkin EM, Aiyagari R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*. Pediatr Crit Care Med. 2014;15(4):336–42.Google Scholar
  129. 129.
    Mitchell W, Clarke S, Sloper P. Care and support needs of children and young people with cancer and their parents. Psycho-Oncology. 2006;15(9):805–16.Google Scholar
  130. 130.
    Nicholas DB, Darch J, McNeill T, et al. Perceptions of Online support for hospitalized children and adolescents. Soc Work Health Care. 2007;44(3):205–23.Google Scholar
  131. 131.
    Mitchell S, Dale J. Advance care planning in palliative care: a qualitative investigation into the perspective of paediatric intensive care unit staff. Palliat Med. 2015;29(4):371–9.Google Scholar
  132. 132.
    Van Cleve L, Munoz CE, Savedra M, et al. Symptoms in children with advanced cancer child and nurse reports. Cancer Nurs. 2012;35(2):115–25.Google Scholar
  133. 133.
    Abu-Saad Huijer H, Sagherian K, Tamim H, Naifeh Khoury M, Abboud MR. Quality of palliative care in children with cancer in Lebanon. J Med Libanais Lebanese Med J. 2013;61(4):228–36.Google Scholar
  134. 134.
    Collins JJ, Byrnes ME, Dunkel IJ, et al. The measurement of symptoms in children with cancer. J Pain Symptom Manage. 2000;19(5):363–77.Google Scholar
  135. 135.
    Stevenson M, Achille M, Lugasi T. Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families. J Palliat Med. 2013;16(5):566–77.Google Scholar
  136. 136.
    Temel JS, Greer JA, El-Jawahri A, et al. Effects of early integrated palliative care in patients with lung and GI cancer: a randomized clinical trial. J Clin Oncol. 2017;35(8):834–41.Google Scholar
  137. 137.
    Mularski RA, Dy SM, Shugarman LR, et al. A systematic review of measures of end-of-life care and its outcomes. Health Serv Res. 2007;42(5):1848–70.Google Scholar
  138. 138.
    The National Academies Press. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: The National Academies Press; 2001. P. 6.Google Scholar
  139. 139.
    Picker Institute. Principles of patient centred care (2015). https://nexusipe.org/informing/resource-center/picker-institute%E2%80%99s-eight-principles-patient-centered-care. Accessed 1 Aug 2018.
  140. 140.
    Wallander JL, Schmitt M, Koot HM. Quality of life measurement in children and adolescents: issues, instruments, and applications. J Clin Psychol. 2001;57(4):571–85.Google Scholar
  141. 141.
    Davis E, Nicolas C, Waters E, et al. Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res. 2007;16(5):863–71.Google Scholar
  142. 142.
    Christ G, H. Healing children’s grief. New York. Oxford Oxford Uinversity Press Inc.; 2000.Google Scholar
  143. 143.
    Wilkins ML, Dallas RH, Fanone KE, Lyon ME. Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature. HIV/AIDS (Auckland, NZ). 2013;5:165–79.Google Scholar
  144. 144.
    Higginson IJ. End-of-life care: lessons from other nations. J Palliat Med. 2005;8(Suppl 1):S161–73.Google Scholar
  145. 145.
    Knapp C, Madden V. Conducting outcomes research in pediatric palliative care. Am J Hospice Palliat Med. 2010;27(4):277–81.Google Scholar
  146. 146.
    Hain R, Devins M, Hastings R, Noyes J. Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions. BMC Palliat Care. 2013;12(1):43.Google Scholar
  147. 147.
    Harding R, Simon ST, Benalia H, et al. The PRISMA Symposium 1: outcome tool use. Disharmony in European outcomes research for palliative and advanced disease care: too many tools in practice. J Pain Symptom Manage. 2011;42(4):493–500.Google Scholar
  148. 148.
    Simon ST, Higginson IJ, Harding R, et al. Enhancing patient-reported outcome measurement in research and practice of palliative and end-of-life care. Support Care Cancer. 2012;20(7):1573–8.Google Scholar
  149. 149.
    Hudson BF, Oostendorp LJ, Candy B, et al. The under-reporting of recruitment strategies in research with children with life-threatening illnesses: a systematic review. Palliat Med. 2017;31(5):419–36.Google Scholar
  150. 150.
    Wolfe J. Suffering in children at the end of life: recognizing an ethical duty to palliate. J Clin Ethics. 2000;11(2):157–63.Google Scholar
  151. 151.
    Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, Wolfe J. Symptoms and suffering at the end oflife in children with cancer: an Australian perspective. Med J Aust. 2010;192(2):71–5.Google Scholar
  152. 152.
    Wilson K, Mazhar W, Rojas-Cooley T, De Rosa V, Van Cleve L. A glimpse into the lives of 3 children: their cancer journey. J Pediatr Oncol Nurs. 2011;28(2):100–6.Google Scholar
  153. 153.
    Tomlinson D, Dupuis LL, Gibson P, et al. Initial development of the Symptom Screening in Pediatrics Tool (SSPedi). [Erratum appears in Support Care Cancer. 2014 Jan;22(1):77–8]. Support Care Cancer. 2014;22(1):71–5.Google Scholar
  154. 154.
    Pritchard M, Burghen E, Srivastava DK, et al. Cancer-related symptoms most concerning to parents duringthe last week and last day of their child’s life. Pediatrics. 2008;121(5):e1301–9.Google Scholar
  155. 155.
    Lan KG, Yun LW. Parents’ perspectives on the important aspects of care in children dying from lifelimiting conditions: a qualitative study. Med J Malaysia. 2015;70(5):295–9.Google Scholar
  156. 156.
    Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med. 2015;18(2):143–50.Google Scholar
  157. 157.
    Jones BL. Companionship, control, and compassion: a social work perspective on the needs of children with cancer and their families at the end of life. J Palliat Med. 2006;9(3):774–88.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  • Eve Namisango
    • 1
    Email author
  • Katherine Bristowe
    • 1
  • Matthew J. Allsop
    • 2
  • Fliss E. M. Murtagh
    • 3
    • 4
  • Melanie Abas
    • 5
  • Irene J. Higginson
    • 1
  • Julia Downing
    • 6
    • 7
  • Richard Harding
    • 1
  1. 1.Cicely Saunders InstituteKing’s College LondonLondonUK
  2. 2.Academic Unit of Palliative Care, Leeds Institute of Health SciencesUniversity of LeedsLeedsUK
  3. 3.Cicely Saunders Institute of Palliative Care, Policy & RehabilitationKing’s College LondonLondonUK
  4. 4.Wolfson Palliative Care Research CenterHull York Medical SchoolHullUK
  5. 5.Health Services and Population Research Department, Institute of Psychiatry, Psychology and NeuroscienceKing’s College LondonLondonUK
  6. 6.International Children’s Palliative Care NetworkBloemfonteinSouth Africa
  7. 7.Palliative Care UnitMakerere UniversityKampalaUganda

Personalised recommendations