| Literature DB >> 35010854 |
Florencia Borrescio-Higa1, Nieves Valdés1.
Abstract
Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers' spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.Entities:
Keywords: caregiver; childhood cancer; psychosocial cost; siblings; well-being
Mesh:
Year: 2022 PMID: 35010854 PMCID: PMC8744617 DOI: 10.3390/ijerph19010599
Source DB: PubMed Journal: Int J Environ Res Public Health ISSN: 1660-4601 Impact factor: 3.390
Descriptive statistics.
| Variable | Number | Percent | Variable | Number | Percent |
|---|---|---|---|---|---|
|
|
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| Gender | Primary caregiver | ||||
| Female | 47 | 52.20% | Mother | 82 | 92.10% |
| Male | 43 | 47.80% | Father | 3 | 3.40% |
| Age at diagnosis (years) | Mother and Father | 2 | 2.20% | ||
| Mean (range) | 6.3 (0–16) | Other | 2 | 2.20% | |
| ≤2 | 20 | 22.20% | Missing | 1 | 1.10% |
| 3–5 | 23 | 25.60% | Primary caregiver occupation | ||
| 6–8 | 22 | 24.40% | Housewife | 30 | 34.50% |
| ≥9 | 25 | 27.80% | Unemployed | 6 | 6.90% |
| Region of birth (a) | Employee—full time | 22 | 25.30% | ||
| Metropolitan region | 38 | 43.20% | Employee—part time | 16 | 18.40% |
| Other regions | 50 | 56.80% | Self-employed | 6 | 6.90% |
| Diagnosis | Retired | 1 | 1.10% | ||
| Leukemia | 83 | 92% | Student | 1 | 1.10% |
| Non-Hodgkin Lymphoma | 7 | 8% | Other | 5 | 5.70% |
| Child’s status | Missing | 3 | 3.30% | ||
| In treatment | 60 | 66.70% | Is (…) one of the child’s caregivers? | ||
| Treatment ended | 28 | 31.10% | Mother | 88 | 98.90% |
| Death | 2 | 2.20% | Father | 60 | 67.40% |
| Health Insurance | Grandmother | 42 | 47.20% | ||
| Private | 43 | 47.80% | Sister | 15 | 16.90% |
| Public | 43 | 47.80% | Aunt | 12 | 13.50% |
| Other | 4 | 4.40% | Brother | 10 | 11.20% |
|
| Grandfather | 9 | 10.10% | ||
| Composition | Uncle | 2 | 2.20% | ||
| Both parents | 44 | 48.90% | |||
| Single parent | 14 | 15.60% | |||
| Both parents and other adults | 9 | 10.00% | |||
| Single parent and other adults | 21 | 23.30% | |||
| Other adults, no parents | 2 | 2.20% | |||
| Siblings | |||||
| Has siblings | 65 | 72.20% | |||
| No siblings | 25 | 27.80% | |||
| Socio-economic status | |||||
| Low | 33 | 36.70% | |||
| High | 57 | 63.30% |
Note: (a) Missing if child had died at the time of the survey.
Negative impact on the patients’ families.
| Variable | Number | Percent |
|---|---|---|
| Number of observations | 89 | |
| Negative impact on the family: | ||
| No effect | 16 | 18% |
| Moderate | 37 | 42% |
| Intense | 28 | 31% |
| Very intense | 8 | 9% |
| Family had to move because of diagnosis and/or treatment | 49 | 55% |
| Patient born in the metropolitan region (a) | 14 | 29% |
| Patient born in other region (a) | 33 | 67% |
| Unknown region of residence (a) (b) | 2 | 4% |
Note: (a) Percentage of families who moved. (b) Missing if child had died at the time of the survey.
Educational, social, and emotional impacts on the patient.
| Variable | Number | Percent |
|---|---|---|
| Educational impact | ||
| Number of observations | 66 | |
| Dropout from school | 38 | 58% |
| Number of observations | 89 | |
| Less time/more difficulties meeting with friends | 61 | 69% |
| Less time/more difficulties for hobbies or sports | 10 | 11% |
| Number of observations | 90 | |
| Negative emotional impact | 53 | 59% |
Figure 1Negative emotional impact on the patient.
Educational, social, and emotional impacts on the patients’ siblings.
| Variable | Number | Percent |
|---|---|---|
| Number of observations | 64 | |
|
| ||
| Changed school | 3 | 5% |
| School absenteeism | 3 | 5% |
|
| ||
| Spends more time alone | 8 | 13% |
| More difficulties meeting with friends | 7 | 11% |
|
| ||
| Negative impact on relationship with parents | 35 | 55% |
Figure 2Primary caregivers’ activities related to the patients’ treatment.
Impact on the primary caregivers’ labor market outcomes.
| Variable | Number | Percent |
|---|---|---|
| Number of observations | 86 | |
| Job absenteeism | 57 | 66% |
| Fired | 7 | 8% |
| Quit job | 20 | 23% |
| Change job | 10 | 12% |
Figure 3Impact on the primary caregivers’ spouse/partner relationships.
Factors associated with selected impacts of the disease.
| Impact | Number of Observations | Unconditional Probability | Marginal Effect | 95% Confidence Interval | ||
|---|---|---|---|---|---|---|
| Negative impact on the family | 87 | 0.816 | ||||
|
| ||||||
| Child is female | −0.115 | 0.166 | (−0.277; 0.047) | |||
| Child’s age | −0.009 | 0.360 | (−0.03; 0.011) | |||
| Child was born in RM | −0.137 | 0.082 | (−0.291; 0.017) | |||
| Single parent | −0.086 | 0.286 | (−0.244; 0.072) | |||
| Child has siblings | 0.089 | 0.311 | (−0.084; 0.262) | |||
| Low SES | 0.089 | 0.343 | (−0.095; 0.272) | |||
| Negative emotional impact on the patient | 88 | 0.580 | ||||
|
| ||||||
| Child is female | −0.083 | 0.417 | (−0.282; 0.117) | |||
| Child’s age | 0.023 | 0.060 | (−0.001; 0.047) | |||
| Child was born in RM | −0.077 | 0.451 | (−0.277; 0.123) | |||
| Single parent | 0.061 | 0.554 | (−0.142; 0.265) | |||
| Child has siblings | −0.052 | 0.656 | (−0.28; 0.176) | |||
| Low SES | 0.166 | 0.116 | (−0.041; 0.372) | |||
| Negative impact on the relationship between siblings and their parents | 63 | 0.540 | ||||
|
| ||||||
| Child is female | 0.109 | 0.348 | (−0.118; 0.336) | |||
| Child’s age | −0.019 | 0.162 | (−0.045; 0.007) | |||
| Child was born in RM | −0.039 | 0.752 | (−0.279; 0.201) | |||
| Single parent | 0.218 | 0.074 | (−0.021; 0.458) | |||
| Low SES | −0.208 | 0.064 | (−0.427; 0.012) | |||
| Negative impact within the primary caregiver’s spouse/partner relationship | 73 | 0.9315 | ||||
|
| ||||||
| Child is female | 0.023 | 0.715 | (−0.1; 0.146) | |||
| Child’s age | −0.009 | 0.247 | (−0.025; 0.006) | |||
| Child was born in RM | 0.017 | 0.794 | (−0.108; 0.141) | |||
| Single parent | 0.097 | 0.260 | (−0.072; 0.266) | |||
| Child has siblings | 0.119 | 0.160 | (−0.047; 0.284) | |||
| Low SES | −0.078 | 0.272 | (−0.216; 0.061) | |||
Note: Unconditional probabilities were computed as the number of observations that reported having the specific impact, divided by the total number of observations considered in the regression. Marginal effects were computed using maximum likelihood estimates of the parameters of logit models. Standard errors used to calculate p-values are robust to the presence of heteroskedasticity.
Figure 4Relationship between the negative impact of the disease on the patients, siblings, primary caregiver, and families.