Caregivers’ perception of psychosocial issues of pediatric patients with osteosarcoma: an exploratory study

Abstract

Background: Survival of children treated for osteosarcoma across India has improved from just 44% in 2001 (Chennai only) to 88.6% in 2016. Advances in treatment (chemotherapy, limb salvage surgery, or limb amputation) impact patients’ ability to work, body image, functional abilities, and recreational activities. Despite this, only little attention has been given to the psychosocial issues of children with osteosarcoma or their caregivers. Aim: The present study aimed to explore caregivers’ perception of psychosocial issues of pediatric osteosarcoma patients. Methods: This qualitative study used a funnel approach with convenience sampling to interview primary caregivers (N = 8) of pediatric osteosarcoma patients (on follow-up at a regional cancer centre in Chennai). There were no exclusions based on gender, disease stage, treatment status, or socioeconomic status. In-depth interviews were carried out using four semi-structured questions, developed by the research team, to guide the discussion of psychosocial issues faced by patients. Interviews were audio-taped, transcribed verbatim, and analyzed using thematic analysis. Codes from transcripts were categorized into themes. Results: Participants were all parents (mostly mothers) with mean age 35.8 years, and the patients they cared for had a mean age of 14 years. Themes identified were: 1) medication and treatment effects; 2) uncertain prognosis; 3) fear of uncertainty; 4) effect on education and activities; 5) restricted functioning; 6) social stigma and isolation; and, 7) social relationships. The psychosocial issues in the present were stressful treatment, physical weakness, and reintegration with normal life and school functioning. Those issues for the future were fear of disease recurrence and death, anxiety about social stigma and isolation, and restricted functioning. Conclusions: Findings from this study suggest a need for future studies that explore psychosocial issues from patients themselves. Interventions can then be designed to lessen psychosocial problems and improve quality of life for osteosarcoma patients and their primary caregivers.

The Crucial Role of Psychosocial Research for Patients and Caregivers: A Narrative Review of Pediatric Psycho-Oncology Research in India

“…32,33 While these overtly appeared physical, they further extended to psychosocial concerns such as low mood, feeling anxious or helplessness, and overall worry about the patient's well-being among caregivers 32,33 The impact on education and activities of the patients were explored with most parents and caregivers reporting concern regarding the child being unable to complete activities or milestones that their peers would be, falling behind and have difficulty cultivating new social relationships and maintaining existing ones. 32,33 Stigma was reported as a major concern, with parents and caregivers reporting that responses such as pity from others would cause the patients to lose self-confidence and it was difficult for them to address these issues with their friends to make play or activities more inclusive or suitable to the child's needs. 33 While fewer patients themselves reported distress, 33 parental perception of distress was greater.…”

“…33 While fewer patients themselves reported distress, 33 parental perception of distress was greater. 32 Across studies, the need for informational support presented either directly 33 or indirectly (as concern over uncertainty of prognosis) as well as a distinct apprehension regarding relapse and subsequently responding to questions related to mortality by the patient. 32…”

WeChat-platform-based education and care program as a candidate approach to relieve anxiety, depression, and post-traumatic stress disorder in parents of pediatric and adolescent patients with osteosarcoma

“…Meanwhile, the use of chemotherapeutic drugs may put patients at increased risk of complications, such as vomiting, secondary malignancies, and heart failure (Zhang et al, 2018 ; Bhagat and Kleinerman, 2020 ). As a result, the parents of pediatric and adolescent patients with osteosarcoma usually bear a huge psychological burden, which may induce psychological diseases, such as anxiety, depression, and post-traumatic stress disorder (PTSD) (Yonemoto et al, 2012 ; Shunmugasundaram and Veeraiah, 2020 ). Therefore, for the parents of patients with osteosarcoma, who may also suffer from the abovementioned mental diseases, it is particularly important to find an intervention method to relieve their psychological stress.…”

Inception of a pediatric cancer caregiver support group guided by parental needs

“…The impact of psychosocial aspects on caregivers most often the parents cannot be stressed enough. Many caregivers experience to name a few, a multitude of complex emotions, have to assimilate information about the illness, be providers to their healthy children and provide round the clock care to the patient 2‐4 . A study by Kearney et al on Standard of Psychosocial care for parents of children with cancer high‐lighted multiple studies which reported that both parents were likely to exhibit significant distress which sometimes lasted up to 5 years post‐diagnosis.…”

“…Many caregivers experience to name a few, a multitude of complex emotions, have to assimilate information about the illness, be providers to their healthy children and provide round the clock care to the patient. 2 , 3 , 4 A study by Kearney et al on Standard of Psychosocial care for parents of children with cancer high‐lighted multiple studies which reported that both parents were likely to exhibit significant distress which sometimes lasted up to 5 years post‐diagnosis. The negative impact of parental distress resulted in poorer quality of life (QOL), emotional, and physical health factors, dysfunctional family functioning and greater marital distress.…”