Young people’s experiences of conductive hearing loss

Members of the general public are welcome to attend our seminars. However space is limited so if you would like to attend, please ring Sandra Smith at least 24 hours prior to the seminar on 0115 823 2634 to reserve a place. If Sandra Smith is unavailable contact Jan Kelly on 0115 823 2617 or contact reception on 0115 823 2600.

12 June 2017

Presenter(s): Dr Carmel Capewell
Time: 13.00 -14.00
Location: NHBRU, Meeting Room 1

Abstract:

Although the NHS promotes involving young people in their treatment options and ensuring that they understand their condition, the realities of clinical practice do not always make this easy or practicable. My area of research is on those children with ongoing Otitis Media (OM) and the ways in which research methods can be developed to gain insight into understanding their experience of the condition. In this seminar, two studies are discussed.

The first was a qualitative study aimed at encouraging young people (aged 10-14) to highlight the issues of importance to them in dealing with chronic OM. An adaptation of the Photovoice methodology was used for data gathering with Interpretative Phenomenological Analysis (IPA) providing an analysis tool. The decision was made to recruit through social media and personal networks to avoid linking the research with a particular context. As mothers are often the parent interfacing between healthcare professionals and their child their experience was also of relevance.  In the seminar the development of the methodology and the findings will be discussed with a specific focus on the themes relevant to clinical practice.

The second study was a mixed methods feasibility study involving children aged 3-7 years with OM with an aim of quantifying their understanding of speech in their daily life. Part of the impetus for this study was that there is a lack of empirical data from the child’s perspective (and the adults around them) as to the extent to which the fluctuation hearing loss effects their interaction with others. The project was called Hearing Maps with the intent that a pie chart could be constructed showing the percentage time a child spent in one of three conditions: Being able to understand all/most of what was said to them; Being able to understand some of what was said to them; Being able to understand little or nothing of what was said to them. This is a perceptual tool.

These are small scale studies but do demonstrate that by using novel methods, young people can provide surprising insights into their experience and what they would like to happen in dealing with their condition.

 

Bio

My interest in this topic is partly based on my own experience as a mother of two children, now adults, who continue to have episodes of OM with long-term hearing loss. The condition is usually perceived as being temporary so there are no support groups and very limited advice as to how parents can manage the condition. The first study was the basis of my PhD: The lived experience of Glue Ear: The voices of young people and mothers.

I am a Chartered Psychologist with an interest in the emotional and social aspects of hearing loss. Patient participation in health research is a growing area. Having spent more than 20 years in education, I am aware that health issues are often dismissed by educational professionals as outside of their remit. The new Special Educational Needs Code of Practice requires greater co-operation between educational and healthcare professionals, but lacks clarity as to how this will happen. Providing young people with self-advocacy tools and encouraging them to express their views is an area I wish to develop