Understanding Perceived Barriers to the Disclosure of Psychological Difficulties by Young People With Coeliac Disease
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 7
- 试验地点
- 1
- 主要终点
- Semi-structured interview
研究概览
简要总结
Being diagnosed with coeliac disease means that individuals can no longer consume things containing gluten, such as bread or cake, or they can become very ill. This can make situations involving food challenging, such as social situations or lunch at school. The investigators know that being diagnosed with coeliac disease as a teenager can be particularly upsetting and can lead to problems such as anxiety or low mood. Research suggests that when young people are worried about the impact of their condition on their life, they can find it challenging to tell their doctor or ask for support.
The investigators would like to understand the experiences of young people with coeliac disease who attend the Paediatric Gastroenterology service at a local children's hospital. The investigators are particularly interested in the reasons why young people either feel able or unable to tell their doctor that they are experiencing difficulties relating to their wellbeing during their appointments, in order to improve support for young people.
This study aims to recruit young people between the ages of 11 and 16, who are attending secondary school, to ask them about the things that make it easier or more difficult to share any concerns about their wellbeing with their doctor.
详细描述
Background -
Coeliac Disease is a genetic lifelong autoimmune condition whereby ingesting gluten leads to a range of idiosyncratic symptoms including diarrhoea, abdominal pain and chronic fatigue. Treatment for coeliac disease requires the individual to maintain a strict gluten free diet (GFD), whereby the individual must exclude foods containing wheat, barley and rye such as bread, pasta and baked goods.
Research indicates that being diagnosed with coeliac disease as a young person, of secondary school age, poses particular challenges when adapting to the new diet and lifestyle. Developmentally, this age-range involves increasing autonomy from parents, growing responsibility for one's own wellbeing and food related activities and increasing peer-pressure to conform. Consequently, young people with coeliac disease can often experience both felt stigma (the fear of discrimination) and enacted stigma (the experience of discrimination) from their peers. Difficulties adapting to a diagnosis of coeliac disease at this age can lead to non-adherence, poor health related quality of life and psychological difficulties. Indeed, higher rates of anxiety, depression and somatic complaints have been found in young people with coeliac disease, emphasising the importance of early detection of psychological difficulties associated with the condition by services.
This poses as a challenge to services, as young people may also experience increased difficulties disclosing psychological difficulties, which may be exacerbated by the process of adjusting to a chronic condition. For instance, research exploring disclosure and support-seeking in young people with Inflammatory Bowel Disease suggests that, despite a high prevalence of anxiety related to health treatments and psychosocial factors, only half of individuals shared these concerns during routine consultations. A recent systematic review suggests that the characteristics of the potential provider of help, such as credibility, unhelpful responses, being perceived as 'too busy', being perceived as an 'inappropriate source of help for mental distress', unfamiliarity and felt stigma from the source of help itself are possible perceived barriers to help-seeking in 11-25 year olds.
Rationale for the current project -
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 11 Years 至 16 Years（Child）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •All participants:
- •Male or Female, aged 11 - 16 years
- •Have a medical diagnosis of Coeliac Disease
- •Attending Secondary school
- •Able to speak fluent English
- •Have been under the care of the Paediatric Gastroenterology service at the local Children's Hospital for >3 months and have had >1 follow-up appointment
- •For participants aged 11-15 only:
- •Willing and able to give assent for participation in the study
- •Parent/guardian is willing and able to give informed consent for their child's participation in the study
- •For participants aged 16:
- •Willing and able to give consent for participation in the study
排除标准
- •Young people with comorbid gastro-intestinal conditions
- •Young people currently receiving psychological support from any psychological service.
结局指标
主要结局
Semi-structured interview
时间窗: Lasts up to 90 minutes per participant.
Includes questions around experiences of having coeliac disease and experiences of disclosing psychological difficulties to clinicians in the service.
次要结局
未报告次要终点