The Fractured Family: Psychosocial and Economic Burdens of Childhood Blood Cancer in Chile

Main Information: Title: The Psychosocial Burden of Families with Childhood Blood Cancer

Author(s): Janya Kumar

Publication Date: January 5, 2022

Source (Journal, Magazine, Website, etc.): Pubmed Central

Finding:

Abstract:

Childhood blood cancers, particularly leukemia, represent a significant public health challenge, impacting not only pediatric patients but also their families. This study examines the multifaceted psychosocial and economic challenges encountered by Chilean families affected by childhood blood cancers. Drawing upon survey data from 90 families, we analyze disruptions in emotional well-being, familial relationships, and socioeconomic stability. Our findings underscore the urgent need for comprehensive support systems that integrate mental health resources with financial assistance, addressing the holistic needs of these vulnerable families.

Introduction:

Childhood cancer is a traumatic experience, marked by distress, pain, and profound disruptions to daily life. While medical advancements have improved survival rates, the psychosocial costs associated with childhood cancer often remain unaddressed. In Chile, cancer is the second leading cause of death for children ages 5-15. Leukemias constitute the most prevalent and resource-intensive pediatric cancers. Beyond direct medical expenses, families face a complex web of indirect costs (e.g., lost income) and intangible psychosocial burdens (e.g., emotional suffering).

Methods:

This study employed a 20-minute phone survey in collaboration with UAI Metrics at the Universidad Adolfo Ibáñez School of Psychology. Participants were recruited through parent liaisons, social media campaigns, and snowball sampling. The survey instrument explored socio-demographic characteristics, impacts on family dynamics, and caregiver labor market outcomes. A socioeconomic status (SES) proxy was constructed based on health insurance affiliation and region of residence, reflecting Chile's centralized healthcare system. Ethical approval was obtained from the Universidad Adolfo Ibañez Institutional Review Board.

Conclusion: 

Childhood blood cancer inflicts multifaceted hardships on families. As survival rates improve, it is crucial to address affected families' psychosocial and economic needs. This study advocates for comprehensive support systems that prioritize mental health, financial stability, and family well-being. By translating research into practice, we can enhance the resilience of families navigating the challenges of childhood blood cancer.

Family Impact: The majority of families reported a significant negative impact following a child's cancer diagnosis. As seen in Table 2, 42% reported a "moderate impact" and 40% an "intense or very intense impact." This extended to significant disruptions such as: 

• Relocation: 53% of families had to relocate to access specialized treatment. This figure underscores the disparities in healthcare accessibility, necessitating policy interventions to alleviate geographical barriers.

  

  
  

Emotional Well-Being: 

Patients:

 The study revealed significant emotional distress among pediatric patients: 

• Depression, discouragement, and irritability were common, with 92% of patients experiencing these symptoms (Table 3). 

• Older children (≥9 years) were more likely to report emotional difficulties, reflecting a greater awareness of their condition and prognosis. 

Siblings 

 Siblings faced unique challenges, marked by: 

• Strained sibling-parent relationships were reported by 72% of families (Table 4) 

• Social isolation and exclusion: 33% experienced bullying or difficulties maintaining friendships. 

Caregivers

 The primary caregiver (92% mothers) faced substantial emotional and relational challenges: 

• 98% of caregivers reported negative effects on their relationship with their spouse/partner (Figure 3) 

• 67% of caregivers experienced symptoms of post-traumatic stress

Socioeconomic Impact: 

 Childhood cancer exerted a substantial impact on caregiver employment. This included: 

• 34.6% of caregivers became homemakers or unemployed

•  25.3% reduced their working hours. 

Interestingly, SES was not significantly associated with overall psychosocial impact, implying that the challenges associated with childhood blood cancer affect families across all economic strata (Table 6). However, low SES was correlated with a lower likelihood of reporting sibling-parent relationship problems. This may reflect underreporting, or differential coping mechanisms within lower-income families.

Policy Implications and Recommendations:

 Childhood cancer exerted a substantial impact on caregiver employment. This included: 

• Enhanced Psychological Support Services: Expand access to mental health resources for patients, siblings, and parents throughout the cancer journey. Therapy, support groups, and early psychosocial risk screening are critical. 

• Financial Assistance Programs: Provide robust financial aid to alleviate economic hardships caused by medical expenses or lost income.

• Sibling-Focused Interventions: Develop programs tailored to address the unique needs of siblings, including emotional support, peer interaction, and counseling.

•  Caregiver Support: Offer respite care, counseling, and support groups to help caregivers manage their mental health and balance competing responsibilities. 

• Addressing Geographical Disparities: Decentralize pediatric cancer care or provide comprehensive relocation assistance for families who must move closer to treatment facilities. Early Screening and Intervention: Implement protocols to identify families at higher psychosocial risk early in the cancer journey to enable timely and targeted interventions.

Limitations::

The authors acknowledge several limitations: 

• The cross-sectional nature of the data limits conclusions about long-term impacts. 

• Sampling bias may affect generalizability.

•  Diagnoses were self-reported rather than clinically verified. 

• Limited information was available about existing psychological interventions.

• Further longitudinal studies with larger samples are needed to confirm these findings.

Works Cited

Borrescio-Higa, Florencia, and Nieves Valdés. “The Psychosocial Burden of Families with Childhood Blood Cancer.” International Journal of Environmental Research and Public Health, vol. 19, no. 1, 5 Jan. 2022, p. 599, www.ncbi.nlm.nih.gov/pmc/articles/PMC8744617/, https://doi.org/10.3390/ijerph19010599.

Rao, Vasudha N., et al. “Inception of a Pediatric Cancer Caregiver Support Group Guided by Parental Needs.” Cancer Reports, 6 June 2021, https://doi.org/10.1002/cnr2.1469. Accessed 8 Aug. 2021.