An Investigation Into the Relationship Between Dietary Intake and Health-related Quality of Life in Children and Young People With Juvenile Idiopathic Arthritis (JIA)
"Physical activity and diet in children and young people with arthritis" A qualitative study of exploring stake holder's experiences.
Juvenile Idiopathic Arthritis (JIA) is the most common type of arthritis in children under the age of 16. The disease and its therapeutic management can cause serious long-term complications, which affect general activities and quality of life. The lack of specific guidelines for safe physical activity and appropriate management of any nutritional deficit aiming our study to find out your views and opinions about the needs of children and young people with juvenile idiopathic arthritis. We want to improve our knowledge about the impact of physical activity and eating habit on juvenile idiopathic arthritis and we want to develop a tool to help evaluate care. Few studies targeting quality of life and wellbeing in children adolescent populations have adopted the diet and physical activity perspective or approaches, consequently, this research project will help to address this gap through:
- Interview: to look at young people's current experiences with JIA as well as their parents/caregivers and health care professionals. Study findings will provide a snapshot of the current experiences of participants, helping to improve our knowledge about JIA, physical activity, and diet. Qualitative studies exploring people perspectives on their experiences, when collected systematically, adds valuable depth, insight and understanding into the issues related to JIA not possible through quantitative methodologies. This study uses a qualitative approach known as framework methodology to understand stakeholder's experience of what helps and what hinders improving the quality of life in children and young adult with JIA. 21-30 stakeholders will be recruited in Oxford UK, to take part in individual semi-structured guided interviews lasting approximately one hour. Participant responses will be transcribed by the chief investigator and analysed to extract themes that will answer the research question.
- Delphi study: which aims to develop a diet and physical activity intervention for children and young adult with JIA.
研究概览
地位
条件
详细说明
"Physical activity and diet in children and young people with arthritis" A qualitative study of exploring stake holder's experiences.
Juvenile Idiopathic Arthritis (JIA) is the most common type of arthritis in children under the age of 16. The disease and its therapeutic management can cause serious long-term complications, which affect general activities and quality of life. The lack of specific guidelines for safe physical activity and appropriate management of any nutritional deficit aiming our study to find out your views and opinions about the needs of children and young people with juvenile idiopathic arthritis. We want to improve our knowledge about the impact of physical activity and eating habit on juvenile idiopathic arthritis and we want to develop a tool to help evaluate care. Few studies targeting quality of life and wellbeing in children adolescent populations have adopted diet and physical activity perspective or approaches, consequently this research project will help to address this gap through:
- Systematic review: to evaluate current evidence about diet, health and health related quality of life in children and young adult with JIA.
- Interview: to look at young people's current experiences with JIA as well as their parents/caregivers and health care professionals. Study findings will provide a snapshot of current experiences of participants, helping to improve our knowledge about JIA, physical activity, and diet. Qualitative studies exploring people perspectives on their experiences, when collected systematically, adds valuable depth, insight and understanding into the issues related to JIA not possible through quantitative methodologies. This study uses a qualitative approach known as framework methodology to understand stakeholder's experience of what helps and what hinders improving the quality of life in children and young adult with JIA. 21-30 stakeholders will be recruited in Oxford UK, to take part in individual semi-structured guided interviews lasting approximately one hour. Participant responses will be transcribed by the chief investigator (PhD student) and analysed to extract themes that will answer the research question.
- Delphi study: which aims to develop diet and physical activity intervention for children and young adult with JIA.
This protocol covers the second and third approaches only (interview and Delphi).
研究类型
注册 (预期的)
联系人和位置
学习联系方式
- 姓名:Najmeh Zare, phd student
- 电话号码:+4401865483293
- 邮箱:18106168@brookes.ac.uk
研究联系人备份
- 姓名:Sarah Quiinton, Dr
- 电话号码:+44 (0) 1865 485694
- 邮箱:sequinton@brookes.ac.uk
学习地点
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Oxfordshire
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Oxford、Oxfordshire、英国、ox3obp
- 招聘中
- Najmeh Zare
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接触:
- Sarah Quinton, Dr
- 电话号码:+44 (0) 1865 485694
- 邮箱:sequinton@brookes.ac.uk
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-
参与标准
资格标准
适合学习的年龄
接受健康志愿者
有资格学习的性别
取样方法
研究人群
描述
Inclusion Criteria:
A) Patients
- Male or female, age range 9 to 18 years old.
- Diagnosed with JIA.
- Speaking and understanding English.
- Willing and able to provide consent if 16-18 years old, or have a parent/carer to provide consent and able to provide assent if the participant is <16.
- Having the access to telephone/video call for those who wish to have distance interview.
B) Parent/Carer
- parent or caregiver of a child with JIA.
- Willing and able to give informed consent for their own and their child's participation (if the child is under 16 years of age).
- Having the access to telephone/video call for those who wish to have distance interview.
- Speaking and understanding English. C) Healthcare professionals
- Willing and able to give informed consent.
- Clinical HCP with at least 2-year experience in treating children and young people with JIA.
- Academic in the field of clinical research in the treatment of JIA.
- Having the access to telephone/video call for those who wish to have distance interview.
- Speaking and understanding English.
Exclusion Criteria:
Individuals will be excluded from the study if ANY of the following apply:
A) Patient
- They have been diagnosed JIA but older than 18 years old.
- Unable to speak and understand English. B) Healthcare professionals
HCP with insufficient experience in JIA management.
- They have less than two years of managing/treating JIA patients.
- They have worked in this field but have stopped for two years or more.
学习计划
研究是如何设计的?
设计细节
研究衡量的是什么?
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
study one interviews
大体时间:one hour
|
views and opinions of participants
|
one hour
|
次要结果测量
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
study two Delphi
大体时间:one hour
|
consensus of views and opinions
|
one hour
|
合作者和调查者
研究记录日期
研究主要日期
学习开始 (实际的)
初级完成 (预期的)
研究完成 (预期的)
研究注册日期
首次提交
首先提交符合 QC 标准的
首次发布 (实际的)
研究记录更新
最后更新发布 (实际的)
上次提交的符合 QC 标准的更新
最后验证
更多信息
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