Psychoeducation Program for Parents of Children With DMD

Duchenne Muscular Dystrophy Clinical Trial

Official title:

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

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT06412328
• Other study ID #: 2023109
• Status: Completed
• Phase: N/A
• Start date: June 21, 2023
• Est. completion date: August 29, 2023

Study information

• Verified date: May 2024
• Source: Lokman Hekim Üniversitesi
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial Summary

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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 26
• Est. completion date: August 29, 2023
• Est. primary completion date: July 29, 2023
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years to 65 Years

Eligibility

Inclusion Criteria:

• Having a child diagnosed with DMD

• Volunteering to participate in the study and reading and signing the informed consent form

Exclusion Criteria:

• Having previously or currently participated in any psychoeducation program

Related Conditions & MeSH terms

• Duchenne Muscular Dystrophy
• Muscular Dystrophies
• Muscular Dystrophy, Duchenne
• Parents
• Psychoeducation

Intervention

Other:
• 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.

Locations

Country	Name	City	State
Turkey	Lokman Hekim Universiyt	Ankara	Cankaya

Sponsors (1)

Lead Sponsor	Collaborator
Lokman Hekim Üniversitesi

Country where clinical trial is conducted

Turkey, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Demographic information form		pre-intervention
Primary	Brief Symptom Inventory	It consists of five sub-dimensions (anxiety, depression, negative self, somatization and hostility) and 53 items. A high score in each sub-dimension indicates an increased level of discomfort in the person.	pre-intervention and immediately after the intervention
Primary	Coping with stress scale	The scale has five sub-dimensions: "self-confident approach", "optimistic approach", "helpless approach", "submissive approach" and "social support seeking approach". The scale consists of 30 items in total and is scored between 0-3. Each sub-dimension is scored separately. In the evaluation of the scale, an increase in the scores obtained from self-confident, optimistic and social support seeking approach means that effective stress coping methods are used, while an increase in the scores of helpless and submissive approach means that ineffective stress coping methods are used.	pre-intervention and immediately after the intervention
Primary	Multidimensional Scale of Perceived Social Support MSPSS	The scale consists of 12 items in total and has three sub-dimensions: "family support, friend support and special person support". The lowest score that can be obtained from the subscales is 4 and the highest score is 28. The lowest score that can be obtained as a total scale score is 12 and the highest score is 84. A high score obtained from the scale means that the perceived social support is also high.	pre-intervention and immediately after the intervention