Explaining Consequences of Parents Having Child with Thalassemia: Qualitative Study

Abstract

<jats:p>Background: Thalassemia can affect different aspects of life the same as any other chronic disease. Despite therapeutic measures of thalassemia, the patient and families encounter several physical and psychological problems. Having a child with thalassemia can disrupts the family mental balance. Objectives: The purpose of this study is to explain the consequences of parents who have children with thalassemia. Methods: Inductive qualitative approach was applied in 2017 - 2018 in Hajar Hospital. Semi-structured interviews were conducted for data collection. Qualitative conventional content analysis was employed for data analysis. 10 five mothers, one grandmother, and two fathers and nurses participated in this study. Results: The three specified categories were as follows: (1) Non-acceptance of disease: disbelief, not following up treatment, and interest for abortion, (2) parent psychological reactions: unhappiness, anxiety, and mental confusion, (3) Isolation: dissociation and stigma. Conclusions: Parents who had children with thalassemia experienced several psychological problems. The consultative and supportive services of the health system were necessary for these parents. Also, it was urgent that the health authorities establish consulting clinics for chronic diseases to provide them the required consulting services.</jats:p>

Basra Center for Hereditary Pediatric Blood Diseases, Patient Characteristics and Attitudes

“…Basrah centre for hereditary blood diseases contain a large cohort of heterogenous blood disease that are all categorised as hereditary, from them sickle cell diseases followed by thalassemia syndromes have its predominancy, Most of the families are large size (5-7) in 70.5 %, the vast majority of mothers were non-employed while only 49.2 % of the fathers were employed, consanguinity marriage was evident in a (77.7%), most of the families (80.3%) involve less than 3 effected child, in correspondence to data from Nineveh study at 2018 same characteristics of family size, consanguinity marriage and parental education but higher percentage of non-employment in our cohort fathers, with a higher number of effected Childs in the families enrolled [11] . Family breakage or social breakage was not evident in (79.5%) which greatly lesser than another studies in Iran [10] but it close to Nineveh cohort in which 24.9% of the marriages were threatened by divorce [11] .…”

The psychosocial challenges of mothers of children with thalassemia

“…[ 27 ] Furthermore, the results of other studies by Pouraboli et al . [ 28 ] and Heidari and Ahmadi[ 29 ] revealed that difficulties of caring of thalassemia children consequently resulted in psychological tensions to their parents. Hence, efforts should be made to alleviate the suffering of mothers by providing appropriate psychological care facilities for mothers of children with thalassemia.…”

A Qualitative Study Exploring the Experiences of Mothers Caring for Their Children with Thalassemia in Iran

“…In the present study, one of the most important challenges for the mothers was their physical distress. Other studies have reported that mothers experience a variety of physical problems such as fatigue, weakness, acute and chronic diseases ( 8 , 24 ). Dahnil et al, showed that thalassemic children's parents, especially mothers, suffered more from physical and social problems than their children and needed comprehensive support for caring for their children ( 25 ).…”

“…Studies have shown that mothers play an active role in caring for their children and spend much time with them ( 6 , 7 ). Moreover, in Iranian culture and society, mothers are assumed to have the most important role in caring for a sick child ( 7 – 8 ).…”

“…These mothers are usually involved in caring process of the child during long periods of treatment, which cause major physical, social and financial burdens on them ( 6 , 8 ). It has been previously indicated that disabled children's mothers have lower physical and psychological health ( 6 , 8 – 9 ). Mothers of thalassemic Childs usually face a variety of tensions which can have negative effects on their life ( 7 ).…”