Caregiver Burden and Social Support in Mothers with β-Thalassemia Children

Abstract

Background: In our knowledge, there was no available information on social support and caregiver's burden among parents of thalassemic children. Aim:To examine caregiver's burden and social support in mothers of thalassemic children, this study was conducted. Methods:This cross-sectional study was conducted from July to October 2013 in Jiroft Thalassemic Center (JTC) in southeast of Iran. To assess the caregiver's burden and social support, caregiver burden scale and Norbeck social support questionnaire was used respectively. Results:There was a response rate of 98% (160 out of 163 mothers were participated). Generally, 51.5% and 49.5% of mothers reported low and high level of social support, respectively. In term of caregiver's burden, 20%, 29% and 51% of mothers reported high, moderate and low level of burden, respectively. There was no significant correlation between mean score of caregiver's burden and mean score of social support. Conclusion:Our study showed that social support of Iranian mothers with thalassemic children is low. In addition, caregiver's burden among this group of mothers is high. Further research is recommended to prepare more evidence in this regard.

The Burden of Care: Experiences of Parents of Children with Thalassemia

“…All participants hoped for their children to get married, continue education, find a job and become independent in future. Parents in Previous studies have similar concerns about their children [27,33] Concern about children's marriages was not reported in some studies conducted in other countries [10] . This concern reflects the importance of marriage in the Iranian/Islamic culture.…”

“…Widayanti stated that parents of children with thalassemia suffer tremendously from provision of daily life-long care for their child [26]. Also Mashayekhi et al reported that psychological problems annoyed families more than other problems [27]. Also Liem et al reported feelings of concern and despair experienced by these parents [28].…”

“…Mashayekhi et al reported that families had experienced Insomnia and fatigue more than other problems [27].…”

Coping Behaviors in Parents of Children with Thalassemia major

“…The improper coping behaviors of the parents result in unfavorable effects on managing the disease of their children and following the treatments (35). The people in charge and nurses should help the parents to enhance their management ability by consultations and administration of suitable interventions (10,36).…”

“…The hereditary nature of this disease, changes in appearance, expecting early death, and need for continuous treatment, impose unfavorable psychological impacts on patients and their families (10,11). Patients with thalassemia are prone to various psychological disorders (12,13).…”