Hostname: page-component-8448b6f56d-m8qmq Total loading time: 0 Render date: 2024-04-19T07:47:31.524Z Has data issue: false hasContentIssue false
  • English
  • Français

Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals

Published online by Cambridge University Press:  31 January 2017

Josianne Avoine-Blondin ,
Véronique Parent ,
Magali Lahaye ,
Nago Humbert ,
Michel Duval  and
Serge Sultan
Josianne Avoine-Blondin
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Psychology, Université de Sherbrooke, Québec, Canada
Véronique Parent
Affiliation:
Department of Psychology, Université de Sherbrooke, Québec, Canada
Magali Lahaye
Affiliation:
Faculty of Psychology, Université Catholique de Louvain, Louvain-la-Neuve, Belgium
Nago Humbert
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
Michel Duval
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
Serge Sultan*
Affiliation:
Department of Psychology, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Québec, Canada Department of Hematology/Oncology, Université de Montréal, Montréal, Québec, Canada
*
Address correspondence and reprint requests to: Serge Sultan, Department of Hematology/Oncology, Centre Hospitalier Universitaire Sainte-Justine, 3175, Chemin de la Côte-Sainte-Catherine, Montréal H3 T 1C5, Québec, Canada. E-Mail : serge.sultan@umontreal.ca.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies are available. The present study aims to describe the domains of QoL in the context of PPC in oncology, according to the perceptions of professional caregivers.

Method:

Semistructured interviews were conducted with a random sample of 20 professional caregivers from the Division of Hematology/Oncology at Le Centre Hospitalier Universitaire Sainte-Justine (Montréal, Canada). The caregivers were asked about their perceptions about the QoL of the children they have cared for in this context. The data were analyzed using inductive thematic content analysis.

Results:

The analysis allowed us to identify seven domains of QoL: “physical comfort,” “alleviation of psychological suffering,” “fun and the present moment,” “sense of control,” “feeling valued and appreciated,” “feeling that life goes on,” and “meaningful social relationships.”

Significance of Results:

Caregivers recount the regard that should be accorded to maintaining well-being and a sense of fun, as well as fostering the child's abilities, taking account of the progression of the disease, and to fulfilling his or her needs, especially social ones. Our results also demonstrate that all domains were positively referred to by professional caregivers. The data from our study will lead to better assessment of QoL according to the trajectory of a child with advanced cancer while undergoing PPC.

Keywords

Pediatric palliative careQuality of lifeCancerProfessionalsQualitative study
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 5 , October 2017 , pp. 565 - 574
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Andersen, E.M., Seecharan, G.A. & Toce, S.S. (2004). Provider perceptions of child deaths. Archives of Pediatrics & Adolescent Medicine, 158(5), 430–435. Available from http://jamanetwork.com/journals/jamapediatrics/fullarticle/485704.CrossRefGoogle Scholar
Association Canadienne de Soins Palliatifs (2006). Soins palliatifs pédiatriques: Principes directeurs et normes de pratique [in French]. Ottawa: Association Canadienne de Soins Palliatifs. Available from http://acsp.net/media/34584/Normes_pediatriques-soins_palliatifs_31_mars_2006.pdf.Google Scholar
Barrera, M., D'Agostino, N., Gammon, J., et al. (2005). Health-related quality of life and enrollment in Phase 1 trials in children with incurable cancer. Palliative & Supportive Care, 3(3), 191–196.Google Scholar
Barsevick, A.M., Irwin, M.R., Hinds, P., et al. , (2013). Recommendation for high-priority research on cancer-related fatigue in children and adults. Journal of the National Cancer Institute, 105(19), 1432–1440. Epub ahead of print Sep 18. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3888121/pdf/djt242.pdf.Google Scholar
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.Google Scholar
Bruera, E., Kuehn, N., Miller, M.J., et al. (1991). The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care, 7(2), 6–9.Google Scholar
Cataudella, D., Morley, T.E., Nesin, A., et al. (2014). Development of a quality of life instrument for children with advanced cancer: The Pediatric Advanced Care Quality of Life Scale (PAC–QoL). Pediatric Blood & Cancer, 61(10), 1840–1845. Epub ahead of print Jun 19.Google Scholar
Collins, J., Devine, T., Dick, G., et al. (2002). The measurement of symptoms in young children with cancer: The validation of the Memorial Symptom Assessment Scale in children aged 7–12. Journal Pain Symptom Management, 23(1), 10–16. Available from http://www.jpsmjournal.com/article/S0885-3924(01)00375-X/pdf.Google Scholar
Comité Consultatif de la Société Canadienne du Cancer (2015). Statistiques canadienne sur le cancer 2015 [in French]. Available from http://www.cancer.ca/~/media/cancer.ca/CW/cancer%20information/cancer%20101/Canadian%20cancer%20statistics/Canadian-Cancer-Statistics-2015-FR.pdf?la=fr-CA.Google Scholar
Coombes, L.H., Wiseman, T., Lucas, G., et al. (2016). Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliative Medicine, 30(10), 935–949. Epub ahead of print May 31. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117129/pdf/10.1177_0269216316649155.pdf.Google Scholar
Friedrichsdorf, A.J., Postier, A., Dreyfus, J., et al. (2015). Improved quality of life at the end of life related to home-based palliative care in children with cancer. Journal of Palliative Medicine, 18(2), 143–150. Epub ahead of print Nov 17, 2014.CrossRefGoogle ScholarPubMed
Gouvernement du Québec (2006). Normes en matière de soins palliatifs pédiatriques: Groupe de travail sur les normes en matière de soins palliatifs pédiatriques [in French]. Available from http://publications.msss.gouv.qc.ca/acrobat/f/documentation/2006/06-902-05.pdf.Google Scholar
Hechler, T., Blankenburg, M., Friedrichsdorf, S. J., et al. (2006). Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klinische Padiatrie, 220(3), 166–174.CrossRefGoogle Scholar
Hinds, P.S., Gattuso, J.S., Fletcher, A., et al. (2004). Quality of life as conveyed by pediatric patients with cancer. Quality of Life Research, 13(4), 761–772.CrossRefGoogle ScholarPubMed
Hinds, P.S., Burghen, E.A., Haase, J., et al. (2006). Advances in defining, conceptualizing, and measuring quality of life in pediatric patients with cancer. Oncology Nursing Forum, 33(Suppl. 1), 23–29.Google Scholar
Huang, I., Shenkman, E.A., Madden, V.L., et al. (2010). Measuring quality of life in pediatric palliative care: Challenges and potential solutions. Palliative Medicine, 24(2), 175–182. Epub ahead of print Dec 10, 2009. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3810279/pdf/nihms302465.pdf.Google Scholar
Institute of Medicine (2001). Crossing the quality chasm: A new health system for the 21st century. Available from http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf.Google Scholar
Kamper, R., Van Cleve, L. & Savedra, M. (2010). Children with advanced cancer: Responses to a spiritual quality of life interview. Journal for Specialists in Pediatric Nursing, 15(4), 301–306. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3016439/pdf/nihms250397.pdf.CrossRefGoogle ScholarPubMed
Knapp, C., Madden, V., Revicki, D., et al. (2012). Health status and health-related quality of life in a pediatric palliative care program. Journal of Palliative Medicine, 15(7), 790–797. Epub ahead of print Jun 11.Google Scholar
Lapierre, A. (1997). La théorisation ancrée (grounded theory): Démarche analytique et comparaison avec d'autres approches apparentées [in French]. In La recherche qualitative: Enjeux épistémologiques et méthodologiques, Poupart, J. (ed.), pp. 309–40. Montréal: Gaëtan Morin Éditeur.Google Scholar
Liben, S., Papadatou, D. & Wolfe, J. (2008). Pediatric palliative care: Challenges and emerging ideas. Lancet, 371(9615), 852–864.Google Scholar
Lyons, K.D., Bakitas, M., Hegel, M.T., et al. (2009). Reliability and validity of the Functional Assessment of Chronic Illness Therapy–Palliative Care (FACIT–Pal) Scale. Journal of Pain and Symptom Management, 37(1), 23–32. Epub ahead of print May 27, 2008. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746408/pdf/nihms88516.pdf.Google Scholar
Mays, N. & Pope, C. (2000). Qualitative research in health care: Assessing quality in qualitative research. BMJ, 320(7226), 50–52. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1117321/pdf/50.pdf.Google Scholar
Michel, F., Harb, F. & Loayza Hidalgo, M.P. (2012). The concept of time in the perception of children and adolescents. Trends in Psychiatry and Psychotherapy, 34(1), 38–41. Available from http://www.scielo.br/pdf/trends/v34n1/a08v34n1.pdf.Google Scholar
Morley, T.E., Cataudella, D., Fernandez, C.V., et al. (2014). Development of the Pediatric Advanced Care Quality of Life Scale (PAC–QoL): Evaluating comprehension of items and response options. Pediatric Blood & Cancer, 61(10), 1835–1839. Epub ahead of print Jun 19.Google Scholar
Paillé, P. & Mucchielli, A. (2012). L'analyse qualitative en sciences humaines et socials [in French]. Paris: Armand Collin.Google Scholar
Patton, M.Q. (2002). Qualitative research and evaluation methods, 3rd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
Pires, A.P. (1997). Échantillonnage et recherche qualitative: Essai théorique et méthodologique [in French]. In La recherche qualitative: Enjeux épistémologiques et méthodologiques. Poupart, J. (ed.), pp. 113–169. Montréal: Gaëtan Morin Éditeur.Google Scholar
Pépin, A.J., Carret, A.S. & Sultan, S. (2015). Quality of life. In Pediatric neuro-oncology. Schneinemann, K. & Bouffet, E. (eds.), pp. 277–288. New York: Springer Science.Google Scholar
Rebok, G., Riley, A., Forrest, C., et al. (2001). Elementary school-aged children's reports of their health: A cognitive interviewing study. Quality of Life Research, 10(1), 59–70.Google Scholar
Tomlinson, D., Hinds, P.S., Bartels, U., et al. (2011). Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. Journal of Clinical Oncology, 29(6), 639–345. Epub ahead of print Jan 18. Available from http://ascopubs.org/doi/pdf/10.1200/JCO.2010.31.4047.Google Scholar
Varni, J., Seid, M. & Rode, C. (1999). The PedsQL: Measurement model for the pediatric quality of life. Medicine Care, 37(2), 126–139.Google Scholar
Varni, J., Limbers, C. & Burwinkle, T. (2007). Impaired health-related quality of life in children and adolescent with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(43), 1–15. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1964786/pdf/1477-7525-5-43.pdf.CrossRefGoogle ScholarPubMed
von Lützau, P., Otto, M., Hecher, T., et al. (2012). Children dying from cancer: Parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. Journal of Palliative Care, 28(4), 274–281.Google Scholar
Whittemore, R., Chase, S.K. & Mandel, C.L. (2001). Validity in qualitative research. Qualitative Health Research, 11(4), 522–537.CrossRefGoogle ScholarPubMed
World Health Organization (2013). WHO definition of palliative care for children. Available from http://www.who.int/cancer/palliative/definition/en/.Google Scholar
Supplementary material: File

Avoine-Blondin supplementary material

Avoine-Blondin supplementary material 1

Download Avoine-Blondin supplementary material(File)
File 14.7 KB