Parental Perception of Their Child's Emotional Quality of Life in Paediatric Oncology Before and After "Magic Massages"

Summary

Rationale: In France, 1,850 cases of cancer are diagnosed in children every year (28% of leukaemia). Despite a cure rate of 83% (all cancers combined), treatment remains a major burden. Changes to the body caused by the disease and its treatment can alter their self-image and the way they relate to their bodies. The massage benefits for children have been highlighted, improving their quality of life (QoL) during treatment. The importance of including parents in the paediatric care process in order to strengthen family ties was also highlighted. Recently, the La Roche-Posay Foundation, in conjunction with a group of experts, developed and rolled out a training course called "Magic Massages" (MM), aimed at parents. The Human and Social Sciences Department of the Léon Bérard Center, in collaboration with the Institute of Paediatric Haematology and Oncology, and with the support of the La Roche Posay Foundation, is conducting a longitudinal multicenter observational study, the main aim of which is to assess parental perceptions of the impact of therapeutic massage on their child's emotional QoL. The secondary objectives of this study are to assess parental perception of the impact of therapeutic massage on their child's QoL and emotional distress (i.e. anxiety and depression), as well as on the quality of the parent-child-caregiver relationship.

Method: In this mixed-method study, 181 parents with a child aged 2 to 12 years treated for acute lymphoblastic leukaemia and diagnosed at least one month previously will be recruited; 161 for the quantitative part, and 20 others will be recruited for the qualitative part. Recruitment will take place nationwide in several oncopaediatric centres. Thus, in the quantitative part of the study, parent participants will complete self-reported measures of their child's QoL, anxiety and depression, as well as parent-child and parent-caregiver relationships. Data will be collected before training (T0); 3 weeks (T1) and 6 weeks after MM training (T2). Concerning the qualitative part, semi-directive interviews will be conducted with participants at T1.

Expected results: The implementation of MM would lead to an improvement in QoL, as well as a reduction in anxiety and depression perceived by parents in their child. An increase in the perceived quality of parent-child-caregiver relationships is also expected. In the long term, large-scale deployment of MM could be envisaged, including in other diseases.

Conditions

• Acute Lymphoblastic Leukemia, Pediatric

Interventions

OTHER

Self-report questionnaires (only for parents)

Quantitative part (all investigating centers): When they come to the various timepoints (T0, T1, T2), participants will be asked to fill in self-questionnaires, either electronically or on paper. If they are unable to come to the center at T1 and/or T2, they will be offered the option of completing the self-questionnaires online. These can also be sent by e-mail or postal mail and received by the same means if necessary. The tools: * Quality of life: Pediatric Quality of Life Inventory * Anxiety: Edmonton Symptom Assessment System; Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety Scale * Depression: Edmonton Symptom Assessment System; PROMIS depression scale * Parent-child relationship: Ad hoc questionnaire * Parent-caregiver relationship: Enabling Practices Scale Socio-demographic data on parents and children, data relating to supportive care will be collected at inclusion. Massage habits will be collected at T1 and T2.

OTHER

Interview (only for parents)

Qualitative part (exclusively at CLB): Participants (parents) in the qualitative part of the study will be asked to complete a self-administered questionnaire on socio-demographic data when they come to the center at T0. Clinical data will also be collected at T0. At T1, an interview will be organized with a researcher dedicated to the study. Qualitative interviews will preferably take place face-to-face, although videoconferencing may be used in certain circumstances.

OTHER

Clinical data collection (only concerning Children)

The children's medical data (patients) will be collected in a Case Report Form (CRF; e.g. type of cancer, date of diagnosis, anti-cancer treatments received, symptoms) at T0.

Sponsors & Collaborators

• Institut d'Hématologie et d'Oncologie Pédiatrique

  collaborator UNKNOWN

• Fondation La Roche Posay

  collaborator UNKNOWN

• Centre Leon Berard

  lead OTHER

Principal Investigators

• Véronique CHRISTOPHE, PR · Centre Leon Berard

• Amélie ANOTA, PHD · Centre Leon Berard

Eligibility

Min Age

2 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2023-10-31

Primary Completion

2024-10-31

Completion

2025-01-31