The perspective of parents and nurse navigators following the use of the distress detection tool for caregivers in pediatric oncology: an exploratory feasibility study

Pascal Bernier, Leandra Desjardins, Marie-Claude Charette, Marie-Paule Latour, Kim-Lien Ho

Abstract


 Background: Systematic distress screening is recognized as a standard of care for parents of children undergoing cancer treatment. The implementation of distress screening in this population has been associated with several limitations, particularly organizational barriers. Despite this, few studies have examined stakeholder perspectives during the implementation of this standard of care.

Objectives: This study aimed to explore (1) the usefulness and overall appreciation of the Distress Detection Tool (DDT) by parents and Oncology Nurse Navigators (ONNs), (2) perceptions of ONNs’ competencies following the use of the tool, and (3) perceptions of available professional, organizational, and time resources.  

Methods: This exploratory, longitudinal feasibility study used surveys at three timepoints (pre-DDT, and two post-use) with both ONNs and parents. Data were analyzed descriptively (means, percentages, and ranges). Open-ended survey responses provided qualitative depth to support quantitative results. 

Results: Twenty-six participants were recruited; 17 completed all timepoints (ONNs n = 2; parents n = 15). Both groups perceived the DDT as useful (ONNs 100%; Parents 92.3% at T3). The ONNs considered themselves having the knowledge (100% at T3) and being skilled (100% at T3) to use the tool, but emphasized that social workers may be better suited to administer it, as it falls within their area of expertise. The ONNs perceived organizational barriers to screening for distress, including a lack of space (ONNs 100%), time (ONNs 50%), and professional resources (ONNs 50%). Some parents highlighted confidentiality issues and the burden on ONNs.

Conclusion: The DDT is perceived as useful for supporting families in pediatric oncology, but implementation requires attention to organizational resources, confidentiality, and human resources. Centers should consider which healthcare professionals are most appropriate and motivated to implement distress screening in routine care.

Keywords: distress, screening, caregivers, nurses, pediatric oncology

https://doi.org/10.5737/23688076362213


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References


Absolom, K., Holch, P., Pini, S., Hill, K., Liu, A., Sharpe, M., Richardson, A., Velikova, G., NCRI COMPASS Supportive, & Palliative Care Research Collaborative. (2011). The detection and management of emotional distress in cancer patients: The views of health-care professionals. Psycho-Oncology, 20(6), 601–608. https://doi.org/10.1002/pon.1916

Agence de la santé publique du Canada. (2017). Cancer chez les jeunes au Canada : Rapport du système de surveillance accrue du cancer chez les enfants. https://www.canada.ca/content/dam/hc-sc/documents/services/publications/science-research-data/cancer-young-people-canada-surveillance-2017-fra.pdf

Ay, A., Semerci, R., & Erkul, M. (2024). Prediction of family-centered care on the unmet care needs of parents of pediatric oncology patients and their psychosocial problems. Pediatric Blood & Cancer, 71(2), e30795. https://doi.org/https://doi.org/10.1002/pbc.30795

Bakula, D. M., Sharkey, C. M., Perez, M. N., Espeleta, H. C., Gamwell, K. L., Baudino, M., Delozier, A. M., Chaney, J. M., Matt Alderson, R., & Mullins, L. L. (2019). Featured Article: The relationship between parent and child distress in pediatric cancer: A meta-analysis. Journal of Pediatric Psychology, 44(10), 1121–1136. https://doi.org/10.1093/jpepsy/jsz051

Barrera, M., Alexander, S., Shama, W., Mills, D., Desjardins, L., & Hancock, K. (2018). Perceived benefits of and barriers to psychosocial risk screening in pediatric oncology by health care providers. Pediatric Blood & Cancer, 65(12), e27429. https://doi.org/10.1002/pbc.27429

Barrera, M., Desjardins, L., Prasad, S., Shama, W., Alexander, S., Szatmari, P., & Hancock, K. (2022). Pilot randomized psychosocial trial of a screening intervention in pediatric oncology. Psycho-Oncology, 31(5), 735–744. https://doi.org/10.1002/pon.5857

Crespo, C., Santos, S., Tavares, A., & Salvador, A. (2016). “Care that matters”: Family-centered care, caregiving burden, and adaptation in parents of children with cancer. Families, Systems & Health – The Journal of Collaborative Family Healthcare, 34(1), 31–40. https://doi.org/10.1037/fsh0000166

Desjardins, L., Etkin-Spigelman, L., Hancock, K., Chung, J., Shama, W., Mills, D., Alexander, S., & Barrera, M. (2020). Healthcare provider utility ratings of a psychosocial screening summary: From diagnosis to 6 months. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 28(4), 1717–1723. https://doi.org/10.1007/s00520-019-04969-w

Haverman, L., van Oers, H. A., Limperg, P. F., Houtzager, B. A., Huisman, J., Darlington, A. S., Maurice-Stam, H., & Grootenhuis, M. A. (2013). Development and validation of the distress thermometer for parents of a chronically ill child. The Journal of Pediatrics, 163(4), 1140–1146 e1142. https://doi.org/10.1016/j.jpeds.2013.06.011

Kazak, A. E., Abrams, A. N., Banks, J., Christofferson, J., DiDonato, S., Grootenhuis, M. A., Kabour, M., Madan-Swain, A., Patel, S. K., Zadeh, S., & Kupst, M. J. (2015). Psychosocial assessment as a standard of care in pediatric cancer. Pediatric Blood & Cancer, 62 Suppl 5, S426-S459. https://doi.org/10.1002/pbc.25730

Kazak, A. E., Barakat, L. P., Askins, M. A., McCafferty, M., Lattomus, A., Ruppe, N., & Deatrick, J. (2017). Provider perspectives on the implementation of psychosocial risk screening in pediatric cancer. Journal of Pediatric Psychology, 42(6), 700–710. https://doi.org/10.1093/jpepsy/jsw110

Leclair, T., Carret, A. S., Samson, Y., & Sultan, S. (2016). Stability and repeatability of the distress thermometer (DT) and the Edmonton Symptom Assessment System-Revised (ESAS-r) with parents of childhood cancer survivors. PLoS One, 11(7), e0159773. https://doi.org/10.1371/journal.pone.0159773

McCarthy, M. C., DeGraves, S., Wakefield, C. E., Bowden, M. J., Marks, L. V., & Williams, L. K. (2016). The association of psychosocial screening and service provision in pediatric oncology: The Psychosocial Assessment Tool (PAT2.0) into clinical practice. Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer, 24(7), 2945–2952. https://doi.org/10.1007/s00520-016-3107-4

Pierce, L., Hocking, M. C., Schwartz, L. A., Alderfer, M. A., Kazak, A. E., & Barakat, L. P. (2017). Caregiver distress and patient health-related quality of life: Psychosocial screening during pediatric cancer treatment. Psycho-Oncology, 26(10), 1555–1561. https://doi.org/10.1002/pon.4171

Schepers, S. A., Sint Nicolaas, S. M., Maurice-Stam, H., Haverman, L., Verhaak, C. M., & Grootenhuis, M. A. (2018). Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis. Cancer, 124(2), 381–390. https://doi.org/10.1002/cncr.31023

van Oers, H. A., Schepers, S. A., Grootenhuis, M. A., & Haverman, L. (2017). Dutch normative data and psychometric properties for the Distress Thermometer for Parents. Quality of life research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(1), 177–182. https://doi.org/10.1007/s11136-016-1405-4


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