Psychoeducation Program for Parents of Children with Duchenne Muscular Dystrophy

Официальное название

The Effect of Psychosocial Support-based Psychoeducation Program on Psychiatric Symptoms, Stress Coping Styles and Social Support Perceptions of Families of Children and Adolescents Diagnosed with Duchenne Muscular Dystrophy

Обзор

Having and caring for a child with disabilities brings emotional, social and economic difficulties for many families. Families may experience many physiological and psychological problems due to the stress and anxiety they experience. In addition, it is seen that families with children with disabilities give up their existing roles, reduce their participation in social activities, and reach stagnation in their social lives. Mothers are affected psychologically more than fathers and feel lonely. It is stated that mothers believe that they cannot afford everything in the face of the responsibilities they carry and accordingly, they experience emotional and psychological problems such as stress, anxiety, depression, absent-mindedness, forgetfulness and tantrums. Living with a child with a disability causes family members to experience different emotions as mentioned above; families may frequently experience fear, anxiety, guilt, anger and depression. It is reported that mothers of children with DMD experience depression, anxiety about the future and uncertainty more than mothers of healthy children. Families of children with DMD reported that they felt tired and fatigued during the process of caring for the child and had difficulties in participating in social activities and allocating time for themselves. Most of these families stated that they needed psychological and social support. Therefore, it is important to address the psychiatric aspects of families with children with DMD during the disease process. Parental health contributes positively to the health and adaptation of the family in general. Examining the psychiatric symptoms caused by the problems experienced by families related to DMD and how they cope with this stress will be useful in evaluating and addressing these families. In addition, the social support that families with children with disabilities receive from their immediate environment and institutions is also an important issue. It has been reported that social support from relatives, friends, neighbors, organizations and communities increases the psychological resilience levels of families, they feel that they are not alone in the face of problems, and their anxiety levels decrease. In the literature, it is generally mentioned that when the culture of pediatric care is supportive and family-oriented, the care of the patient will undergo a change when transitioning from pediatric care to the adult period. However, studies evaluating the problems experienced by families in the care of patients with DMD, psychiatric symptoms, ways of coping with stress and perceived social support are insufficient. It is important to evaluate the problems experienced by parents in the families of children with DMD in developing skills to cope with the disease process and disease-related problems, and then to provide training in these areas. Because if parents, who are in the role of caregivers, are equipped with knowledge and skills in this context, they will provide better care and be more useful to their children with DMD. In line with this information, the aim of this study was to evaluate the problems experienced by parents of children with DMD, psychiatric symptoms, coping skills with stress and the level of social support they perceive and to implement a psychosocial support-based psychoeducation program related to these areas.

Вмешательства

• Другое Psychoeducation
  The psychoeducation program based on psychosocial support is a total of 8 sessions. Families participating in the study received the psychoeducation program over 4 weeks, with two sessions per week, each session lasting 60 minutes. Parents were included in group work during the psychoeducation program.

Первичные конечные точки

• Demographic information form [Срок оценки: pre-intervention]
• Brief Symptom Inventory [Срок оценки: pre-intervention and immediately after the intervention]
• Coping with stress scale [Срок оценки: pre-intervention and immediately after the intervention]
• Multidimensional Scale of Perceived Social Support MSPSS [Срок оценки: pre-intervention and immediately after the intervention]

Критерии участия

Критерии включения

• Having a child diagnosed with DMD
• Volunteering to participate in the study and reading and signing the informed consent form

Критерии исключения

• Having previously or currently participated in any psychoeducation program

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Нет

Дизайн исследования

Распределение

Рандомизированное

Модель

Параллельные группы

Маскирование

Открытое

Основная цель

Поддерживающая терапия

Центры проведения

Turkey (Türkiye) · 1 центр

• Lokman Hekim Universiyt — Ankara

Идентификаторы

NCT: NCT06412328 · 2023109

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

Открыть это исследование на ClinicalTrials.gov ↗