Life satisfaction and difficulties experienced by the family members of individuals with thalassemia.
Sibel Sevinç
PMID 36812055WHAT IT FOUND
Family members of people with thalassemia reported average life satisfaction 11.18 (range 5 to 23), where higher means more satisfaction, and described regret, treatment burdens, fear, and isolation.
Key findings
01The average life satisfaction score was 11.18 ± 5.13 (range: 5 to 23 points), and no significant relationship was found with socio-demographic or disease characteristics.
0210 themes were derived from the family members' comments, including regret over missed opportunities to prevent the disease, difficulties with disease treatment, accepting the disease, family members' feelings, concerns about individuals with thalassemia, and social isolation.
03Family members reported difficulties with transportation, finances, finding blood, and access to haematology services.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included only 22 family members from a Blood Diseases Polyclinic in a Turkish district, so the experiences may not represent all thalassemia families. Syrian relatives were excluded because they could not speak fluent Turkish, and relatives of thalassemia intermedia patients or Syrian patients were not included. The study included only 22 family members, so the negative correlation with mother's age may not apply to other families. The qualitative themes were transcribed and coded by the researcher without software, so they reflect that researcher's interpretation. The study described experiences and scores during February 2022 to April 2022; it did not test any treatment or show that nurse actions improve life satisfaction.
Declared interests
The research was conducted and written without support or funding from any commercial organization, and the author declared no conflicts of interest.
The easy way to misread this
Do not read the themes or the average life satisfaction score as proof that thalassemia treatment causes family dissatisfaction or that family support will improve life satisfaction. The study described 22 relatives at a Blood Diseases Polyclinic and tested no intervention.