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Patient and Parent Experiences with Group Telerehabilitation for Child Survivors of Acute Lymphoblastic Leukemia

Author

Listed:
  • Genevieve Lambert

    (Department of Experiemental Surgery, McGill University, Montreal, QC H3G 1A4, Canada
    CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada
    Shriners Hospital for Children, Montreal, QC H4A 0A9, Canada)

  • Nathalie Alos

    (CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada
    Shriners Hospital for Children, Université de Montréal, Montreal, QC H2V 2S9, Canada)

  • Pascal Bernier

    (CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada)

  • Caroline Laverdière

    (CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada
    Shriners Hospital for Children, Université de Montréal, Montreal, QC H2V 2S9, Canada)

  • Kenneth Drummond

    (Department of Experiemental Surgery, McGill University, Montreal, QC H3G 1A4, Canada
    Shriners Hospital for Children, Montreal, QC H4A 0A9, Canada)

  • Noémi Dahan-Oliel

    (Department of Experiemental Surgery, McGill University, Montreal, QC H3G 1A4, Canada
    Shriners Hospital for Children, Montreal, QC H4A 0A9, Canada)

  • Martin Lemay

    (CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada
    Department of Otolaryngology, Université du Québec à Montréal, Montreal, QC H2X 1L7, Canada)

  • Louis-Nicolas Veilleux

    (Department of Experiemental Surgery, McGill University, Montreal, QC H3G 1A4, Canada
    CHU Sainte-Justine Research Center, Montreal, QC H3T 1C5, Canada
    Shriners Hospital for Children, Montreal, QC H4A 0A9, Canada)

  • Dahlia Kairy

    (Shriners Hospital for Children, Université de Montréal, Montreal, QC H2V 2S9, Canada
    Centre for Interdisciplinary Research in Rehabilitation of Greater, Montreal, QC H3S 1M9, Canada)

Abstract

Background: Acute Lymphoblastic Leukemia (ALL) is the most common pediatric cancer. ALL and its treatment cause altered bone-mineral homeostasis, which can contribute to musculoskeletal late adverse effects (LAEs). With the increasing number of childhood cancer survivors, LAEs are reported often, and are aggravated by inactive lifestyles. A telerehabilitation program is proposed to strengthen the muscle–bone complex and prevent future impairment. Objective: This study aimed to explore and better understand patient and parent experience of a telerehabilitation program after completion of ALL treatment. Methods: ALL survivors ( n = 12), 75% girls, 7.9 to 14.7 years old, within six months to five years of treatment, were recruited to participate in the proposed study, along with a parent. The 16-week group program included 40 potential home-based physical activities, with monthly progression, supervised by a kinesiologist, through an online telerehabilitation platform. Patients could be included in the study if they joined during the first month of intervention of their group (minimum 12 weeks of intervention). A semi-structured post-intervention interview was conducted with the patients and their parent during the final assessment, along with a review of the kinesiologist’s clinical notes, to obtain a portrait of the participants’ experience with the telerehabilitation program. Overarching themes were identified by one author and confirmed by two senior authors before extracting the various aspects of each theme. Results: Of the 12 patients recruited, three were excluded from the analysis because they did not complete the minimum 12 weeks of intervention (one = relapse, one = failure to meet technical requirements, and one = abandoned due to parent’s disinterest). The nine patients who completed the program (six girls; 10.93 ± 2.83 years) had a mean adherence of 89%. The overarching themes identified were the program modalities (group approach with patient–parent paired training, supervised by a kinesiologist), the telerehabilitation system, the participants’ perception of the benefits, and recommendations and suggestions from the families. Both patients and parents expressed very high satisfaction with the program and perceived benefits. Conclusion: Participants appreciated the program and reported they would all recommend it to other families in similar situations. The telerehabilitation method of service delivery was perceived by some as decisive in choosing to participate, while the supervision and intra- and inter-family interactions were the motivating factors that were key to program adherence.

Suggested Citation

  • Genevieve Lambert & Nathalie Alos & Pascal Bernier & Caroline Laverdière & Kenneth Drummond & Noémi Dahan-Oliel & Martin Lemay & Louis-Nicolas Veilleux & Dahlia Kairy, 2021. "Patient and Parent Experiences with Group Telerehabilitation for Child Survivors of Acute Lymphoblastic Leukemia," IJERPH, MDPI, vol. 18(7), pages 1-17, March.
  • Handle: RePEc:gam:jijerp:v:18:y:2021:i:7:p:3610-:d:527192
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    References listed on IDEAS

    as
    1. Dahlia Kairy & Michel Tousignant & Nancy Leclerc & Anne-Marie Côté & Mélanie Levasseur & The Telage Researchers, 2013. "The Patient’s Perspective of in-Home Telerehabilitation Physiotherapy Services Following Total Knee Arthroplasty," IJERPH, MDPI, vol. 10(9), pages 1-14, August.
    2. Dahlia Kairy & Paula W. Rushton & Philippe Archambault & Evelina Pituch & Caryne Torkia & Anas El Fathi & Paula Stone & François Routhier & Robert Forget & Louise Demers & Joelle Pineau & Richard Gour, 2014. "Exploring Powered Wheelchair Users and Their Caregivers’ Perspectives on Potential Intelligent Power Wheelchair Use: A Qualitative Study," IJERPH, MDPI, vol. 11(2), pages 1-18, February.
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    1. Khawla Loubani & Rachel Kizony & Uzi Milman & Naomi Schreuer, 2021. "Hybrid Tele and In-Clinic Occupation Based Intervention to Improve Women’s Daily Participation after Breast Cancer: A Pilot Randomized Controlled Trial," IJERPH, MDPI, vol. 18(11), pages 1-15, June.

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