Support for Adolescents With Celiac Disease
Condition: Celiac Disease in Children
MeSH terms: Celiac Disease
Study type: Interventional

Summary: 
      This study was designed as a randomized controlled experimental study to examine the effects
      of peer-interaction group support in adolescents with celiac disease (CD) in the 13-18 age
      group on the quality of life, friendship relations, and coping levels of adolescents.

      Six peer interactive group sessions were held with one week intervals with adolescents (n =
      18) in the study group included in the sample for a period of 3 months. In the sessions, all
      participants were asked questions about the purpose of the session and a discussion
      environment was created. No training and counseling were provided to the adolescents in the
      control group (n = 18). Before and after the peer interactive group support, adolescents in
      the intervention and control group were asked to complete the quality of life, friendship
      qualities, and coping scales.
    

Detailed description: 
      The study is a randomized controlled experimental study conducted to examine the effect of
      peer interactive group support on quality of life, peer relationships and coping (coping)
      levels in adolescents aged 13-18 years with celiac disease.

      The study was conducted on adolescents with a diagnosis of celiac disease in the outpatient
      clinic of the Department of Child Health of Afyon Kocatepe University in Afyonkarahisar. This
      change took place after research permissions were obtained. Patients are served in the
      polyclinic between 09:00 and 17:00 on weekdays. Gastroenterology Specialist, who monitors the
      patients with Celiac diagnosis, works as a physician. There are no nurses in the polyclinic
      and individual training is not given to celiac patients according to their needs.

      There are 85 patients with a diagnosis of celiac disease in the 0-18 age group who were
      followed up in the Department of Child Health and Diseases of Afyonkarahisar Health Sciences
      University, where the study will be conducted. It was determined from the patient records
      that there were 36 patients with a diagnosis of celiac disease in the 13-18 age group. The
      universe of the study consisted of patients with a diagnosis of celiac disease in the 13-18
      age group who were followed up in the Pediatric Outpatient Clinic of Afyonkarahisar
      University of Health Sciences.

      Data Collection Tools Introductory Information Form, Quality of Life Scale for Children
      (13-18 age group), Friendship Qualities Scale and Coping Scale for Adolescents prepared by
      the researcher for data collection.

      Introductory Information Form In this form prepared by the researcher, there are 14 questions
      regarding the demographic characteristics of the mother, father, family and child. After
      randomization, an introductory information form (before peer interactive group support) was
      administered to all adolescents in the research and control groups in a classroom of the
      Pediatric Outpatient Clinic where the study was conducted.

      Children's Quality of Life Scale - PedsQL (13-18 age group) The quality of life scale for
      children was developed by Varni et al. (1999) to measure the quality of life of children and
      adolescents aged 2-18 years. The internal consistency coefficient (Cronbach's alpha) of the
      section prepared for children of the scale developed by Varni et al. Was found to be 0.93.
      Memik et al. (2007) conducted a study on the validity and reliability of the adolescent form
      of the PedsQL (13-18 years old).

      While the World Health Organization defines health, it covers the areas of physical,
      emotional and social functionality. Scoring is made for these three areas in the scale. In
      the scale, a fourth area under the name of school functionality is questioned. The
      psychosocial health total score (PSTP) is calculated by calculating the total score (STP),
      physical health total score (FSTP), emotional, social and school functionality item scores in
      the scale.

      The Quality of Life Scale for Children (PedsQL) is a scale suitable for use in healthy or ill
      children and adolescents in settings such as schools and hospitals. The scale consists of 23
      items in total. The scale is in the form of a 5-point Likert scale and is scored between 0-4.
      The items are scored between 0-100. The scale gives 100 points for never answer, rarely 75
      points for its answer, sometimes 50 points for its answer, often 25 points for its answer,
      and almost always 0 points for its answer. The Turkish validity and reliability study of the
      PedsQL for the 13-18 age group was conducted by Memik et al. (2007). The internal consistency
      coefficient (Cronbach's alpha) of the form prepared for adolescents in the study of Memik et
      al. Was found to be 0.82.

      Friendship Qualities Scale The friendship qualities scale aims to evaluate the relationships
      of 10-18 year old children and adolescents with their best friends. The scale was created by
      Bukowski et al. (1994). The internal consistency coefficients (Cronbach's alpha) according to
      the sub-dimensions of the scale were: 0.72; conflict: 0.68; proximity: 0.76; help: 0.81; and
      protection: found to be 0.58. The Turkish validity and reliability study of the scale was
      conducted by Erkan Atik et al. (2014). Participants included in the study are secondary and
      high school students. The internal consistency coefficient of the whole scale in the study of
      Erkan Atik et al. Was found to be 0.85. The scale includes 22 items and five sub-dimensions.
      The scale is graded from 1 to 5. "1" is not right for your friendship, "2" may be correct,
      "3" is usually correct, "4" is very correct, "5" is completely correct. The sub-dimensions of
      the scale are togetherness, conflict, assistance, protection and closeness. Togetherness
      sub-dimension, items 1, 2, 3 and 4, conflict sub-dimension 5,6,7 and 8 items, help
      sub-dimension 9,10,11,12 and 13 items, protection sub-dimension 14,15,16 and 17th items,
      proximity sub-dimension is calculated by evaluating items 18,19,20,21 and 22. All items in
      the conflict sub-dimension of the scale are calculated by reverse coding. The scores that can
      be obtained vary between 4-20 in the Togetherness, Conflict and Protection sub-dimensions,
      and 5-25 in the Assistance and Proximity sub-dimensions. If the scale score to be obtained
      from both the total score and the sub-dimensions is high, this is considered as positive peer
      relationships.

      Coping Scale for Adolescents (KIDCOPE) The scale, which was created by Spirito et al. (1988)
      under the name of KIDCOPE (multidimensional coping strategies for children scale), consists
      of two forms for children (5-13 years old) and adolescents (13-18 years). The internal
      consistency coefficient (Cronbach's alpha) of the scale was 0.62. The Coping Scale for
      Adolescents consists of 11 items in total. This scale includes ten coping strategies. These
      strategies include social distancing, distraction, desiring thinking, problem solving,
      withdrawal, cognitive restructuring, social support, emotion regulation, self-criticism, and
      blaming others.

      The 10 strategies included in KIDCOPE are; distraction (played a game to watch or forget TV),
      withdrawal (left alone), desiresing thinking (wanted to be able to do things differently),
      self-criticism (blamed myself), blaming others (blaming someone else for causing the
      problem), problem solving (I tried to solve the problem by thinking about the answers),
      emotion regulation (tried to calm myself or yelled, screamed), cognitive restructuring (tried
      to see the good side of things), social support (tried to feel better by spending time with
      family or friends) and social distancing (I didn't want to spend time with my family or
      friends) The 10 strategies included in KIDCOPE are; distraction (played a game to watch or
      forget TV), withdrawal (left alone), desiresing thinking (wanted to be able to do things
      differently), self-criticism (blamed myself), blaming others (blaming someone else for
      causing the problem), problem solving (I tried to solve the problem by thinking about the
      answers), emotion regulation (tried to calm myself or yelled, screamed), cognitive
      restructuring (tried to see the good side of things), social support (tried to feel better by
      spending time with family or friends) and social distancing (I didn't want to spend time with
      my family or friends) In the implementation phase of the study, a classroom belonging to the
      Child Health and Diseases Polyclinic of Afyonkarahisar Health Sciences University Faculty of
      Medicine Hospital was used. All sessions in the research were held in this classroom. The
      sessions lasted an average of 90 minutes in two 45-minute sections. Gluten-free products were
      presented during the 20-minute break between sessions. During the break, adolescents were
      given the opportunity to interact with each other by chatting. The pre-test application of
      the introductory information form and scale forms of all the participants in the research
      group was applied at the beginning of the first session, and the post-test application at the
      end of the last session, which was the sixth session. The pre-test application of the
      participants included in the control group was applied on the same day separately from the
      research group, and the post-test application (only scales) was applied in the same classroom
      at the end of all sessions.

      Research Group Interactive peer group support was implemented for 3 months, one week apart. A
      total of 6 sessions were held with the research group. Group meetings were planned to be held
      at the weekend in order to prevent adolescents' attendance at school. However, as the data
      collection phase is in the summer and schools are closed, the sessions were held on weekdays
      and bi-weekly. The adolescents in the study group were reached by phone before each session.
      One day before the session, all participants were sent a text message informing the meeting
      and its place and time and they were invited. Each session lasted 1.5 hours on average.

      The contents of the first and second sessions of the research were prepared beforehand.
      However, the contents of the third, fourth, fifth and sixth sessions were arranged after the
      first two sessions. Table of contents of the 6 sessions held is presented in Table 3.

      In the sessions, all participants were asked questions regarding the target determined for
      the session. By creating a discussion environment based on these questions, it was ensured
      that the participants shared their problems and solutions with each other. The responses of
      the participants to the questions were noted and reported by the researcher.

      Control Group No peer interactive group support was provided to the control group. In the
      control group, in a classroom belonging to the University's Child Health and Diseases
      Polyclinic where the study was conducted, the Introductory Information Form, the Quality of
      Life Scale for Children, the Friendship Qualities Scale, the Adolescent Coping Scale were
      applied after the adolescents and parents were informed about the subject of the study and
      written permission was obtained. Three months later, the Adolescents in the control group
      were administered the Quality of Life Scale for Children, Friendship Qualities Scalee, and
      the Adolescent Coping Scale.

      The adolescents in the control group were not informed about the routine education they
      received from the hospital during the study. A separate training meeting was held for the
      control group on 11.10.2018, after all sessions of the peer interactive group support of the
      study were completed. The training lasted about one hour in the classroom of the University's
      Child Health and Diseases Polyclinic. The definition, symptoms and signs of celiac disease,
      treatment and dietary rules were discussed in the training content. At the end of the
      meeting, an information booklet titled "Living with Celiacs" was given.
    

Intervention name(s): Celiac Disease Definition, Symptoms and Treatment; Difficulties Due to Celiac Disease; Gluten Free Diet in Celiac Disease; Difficulties Related to Disease in School and Social Life; Celiac Disease and Its Effects on Acamdemic Success Peer Relations; Celiac Diseae anf Future Goals; No Intervention: routine health care- control group
Intervention type(s): Behavioral; Behavioral; Behavioral; Behavioral; Behavioral; Behavioral; Other
Intervention description(s): Adolescents share their knowledge about the disease
Emphasizing the definition and symptoms of celiac disease
Discussion of the treatment of celıac disease Expression Question-Answer Discussion Summarizing; Determining what experience living with celiac is fot the patient (What do I think about the disease, how do I feel about the disease,how do I perceive the disease, how does the disease affect me)
Determining the difficulties encountered in Daily life due to illness (How do I deal with difficulties)
Determining how the disease affects life Expression Question-Answer Discussion Summarizing; Evaluating dietary information
Identifying the difficulties in diet therapy Expression Question-Answer Discussion Summarizing Case Study Presentation (Transfer of life experience of an individual who is 22 years old with celiac disease); Assessment of difficulties encountered in school and social life
Evaluation of the solution suggestions fort he difficulties encountered Expression Question-Answer Discussion Summarizing Örnek Olay Sunumu (Transfer of life of experience of a 23 years old dietician with celiac disease); Evaluation of the effects of the disease on academic success
Evaluation of the effects of the disease on peer relationships in the school enviroment
Difficulties experienced in peer relations and evaluation of relationships (exclusion) Expression Question-Answer Discussion Summarizing; General summary of all sessions so far
Summarizing the topics discussed in the previous session
Evaluating the future goals of the participants Expression Question-Answer Discussion Summarizing; Peer interactive group support was not provided to the control group. After all the sessions of the peer interactive group support of the study were completed, a separate training meeting was held for the control group.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Celiac Disease; Adolescent; Quality of Life; Friendship Relations; Coping; Nursing Care