The Experiences of Parents of Children with Thalassemia Major in Turkey: A Qualitative Study

Background: Invasive medical procedures and their complications of Thalassemia Major still affect the quality of life of all patients and their caregivers. Aim: This study evaluates the experiences of parents of children with Thalassemia Major. Method: The qualitative phenomenological method was use...

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Bibliographic Details
Published in:International journal of caring sciences 2022-01, Vol.15 (1), p.424-434
Main Authors: Karakul, Atiye, Oymak, Yesim, Karapinar, Tuba Hilkay
Format: Article
Language:English
Subjects:
Anemia
Anxiety
Blood diseases
Blood transfusions
Caregivers
Children & youth
Chronic illnesses
Data analysis
Data collection
Families & family life
Hospitals
Interviews
Parents & parenting
Qualitative research
Quality of life
Sociodemographics
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Summary:Background: Invasive medical procedures and their complications of Thalassemia Major still affect the quality of life of all patients and their caregivers. Aim: This study evaluates the experiences of parents of children with Thalassemia Major. Method: The qualitative phenomenological method was used to determine the parents' experiences. The study sample included 14 parents who met the inclusion criteria. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's sevenstep method. Results: Four themes of the interviews were established: unprecedented psychosocial distress, social support, financial burden and concern about children in the future Parents stated that they experienced shock, sadness, fear, stress, depression, death anxiety, fatigue and burnout. Especially with the COVID-19 epidemic in our country, parents stated that their lives became more difficult and their concerns about their children increased. Conclusions: Healthcare staffs need to understand parents' psychosocial distress and coping strategies to provide support and guidance from the outset of treatment and care. It is recommended that interventions be planned and implemented in a way that maximizes the quality of life of children and families.
ISSN:1791-5201
1792-037X