Table 2 Extraction data

(Sadeghloo et al. [19])

Determining the effect of positive thinking training on the quality of life of parents of adolescents with thalassemia

Iran

52 parents of adolescents with thalassemia

Quasi experimental

Positive thinking training for parents of children with thalassemia to improve their quality of life. This program consists of sessions that foster an optimistic mindset and help parents manage stress and anxiety related to their child’s condition.

The positive thinking training was conducted by researchers with a Master’s degree in pediatric nursing and their supervisor with a PhD in psychiatric nursing over 10 sessions (45–60 min per session) for 6 consecutive weeks in the hospital’s education room.

There was a significant difference in the quality of life scores in the intervention group before and after the intervention (p < 0.001)

(Wacharasin et al. [27])

To examine the effectiveness of a Family Empowerment Program (FEP) on family function, family empowerment, and quality of life for families with a child with thalassemia.

Thailand

56 families

Quasi experimental

A family empowerment program to enhance family functioning and well-being in caring for children with thalassemia. This intervention helps families understand their roles in managing their child’s disease and improves their caregiving skills.

The participants received the Family Empowerment Program (FEP) and standard care, divided into three groups with 10 families per group (12–15 participants per group), and the FEP was conducted over four days.

There was a significant improvement in the scores for family function, quality of life, and empowerment over time.

(Zareban et al. [33])

To evaluate the effectiveness of implementing an educational program in adopting thalassemia prevention behaviors and improving quality of life.

Iran

71 participants

RCT

An educational program based on the Theory of Planned Behavior (TPB) to enhance preventive behaviors among mothers of children with thalassemia. Nurses teach healthy behaviors, enhance mothers’ self-control, and provide support in decision-making related to prevention.

The educational method used in this study was a 20-minute educational video about thalassemia, covering topics such as safe pregnancy prevention methods, the importance of prenatal diagnosis, and the social, economic, and psychological consequences for couples and families.

There was a significant increase in perceived behavior, behavioral intention, quality of life, and actual behavior in the intervention group after the intervention (P < 0.05).

(Mariani et al. [29])

To determine the influence of family psycho-educational intervention on coping strategies and quality of life among parents caring for a child with thalassemia.

Indonesia

44 parents

Quasi experimental

Psychoeducation intervention for parents of children with thalassemia to improve their coping strategies. Nurses provide psychosocial support and guide parents in dealing with emotional and social challenges in caring for their children.

After the first session, which involved providing educational information about thalassemia, the parents were given a 15-minute break, and then the second session commenced. The second session focused on the parents sharing coping strategies among themselves to manage the stress associated with caring for a child with thalassemia.

Significant improvement in the quality of life of parents.

(Lotfi et al. [32])

To evaluate the impact of a care program using the teach-back method on the knowledge, attitudes, quality of life, and performance of parents of children with thalassemia.

Iran

62 parents of children with β-thalassemia.

Quasi experimental

Facilitators in the teach-back program aimed at improving parents’ knowledge, attitudes, and performance in caring for children with thalassemia.

The training program was implemented individually during morning shifts from April 2022 to February 2023, with the number of training sessions for each parent varying between 3 and 6 sessions (60–90 min) depending on the parent’s learning, patience, and availability.

There was a significant difference in the scores of knowledge, attitudes, and quality of life.

(Firmansyah et al. [28])

To evaluate the Family Empowerment Program (FEP) on the quality of life and care methods of parents with children with thalassemia.

Indonesia

2 participants

Case study

Helping families implement the Family Empowerment Program (FEP), which aims to improve the quality of life of children with thalassemia through education and family support. Nurses assess family needs, provide training, and evaluate changes after the intervention.

The Family Empowerment Program (FEP) was used as an approach to care for children with thalassemia and their quality-of-life issues.

The family empowerment approach significantly improved social functioning and quality of life.

(Setiawan et al. [31])

To measure the level of usefulness of the Cyber Gen application as a medium for indirect genetic counseling for parents with children with thalassemia.

Indonesia

30 participants

Case study

Using the Cyber Gen mobile application to provide genetic counseling services to thalassemia patients and caregivers. This application helps deliver basic information, consultations, and social support, making technology-based nursing services more accessible.

The counselors or consultants include registered nurses who are members of the Indonesian National Nurses Association and have attended training clinics for the practice of genetic counseling in the nursing profession.

The Cyber Gen application can be used to provide genetic counseling interventions to thalassemia patients and caregivers to improve their quality of life.

(Mahmoud & Yossif [30])

To evaluate the influence of a counseling program for mothers to improve the quality of life of parents with children who have thalassemia.

Egypt

51 mothers

Quasi experimental

Providing counseling to mothers of children with thalassemia, helping them better understand their child’s disease and improve their child’s quality of life. The intervention includes educational sessions on disease management and skill enhancement for mothers in caring for their children.

The counseling program was implemented over a 6-month period, consisting of 5 sessions, with each session ranging from 21 to 31 min in duration. The sessions were conducted either individually or in groups of 2 to 4 mothers and their children in the waiting room of the polyclinic.

Counseling can improve knowledge and quality of life.

(Rakhmilla et al. [34])

To evaluate an educational intervention to improve the knowledge, management, and quality of life of mothers with children who have β-thalassemia.

Egypt

38 participants

Quasi experimental

Educating high school students about thalassemia prevention using various methods such as conventional teaching, animated videos, and peer education.

Educational intervention on diet is very important because β-thalassemia causes an increase in iron absorption in the digestive system, leading to iron overload. Therefore, patients are advised to avoid foods that are high in iron, such as liver, spleen, cereals, nuts, leafy green vegetables, and molasses.

Social and professional support are highly recommended for the effectiveness of care in improving quality of life.