Hearing the voice of children with medical conditions to listen to their stories & consider how to support their educational experiences (1 with CFS)

Dolphin · Aug 21, 2018

Full thesis available at link:
http://etheses.whiterose.ac.uk/21244/

‘Just Bead It’: hearing the voice of children with medical conditions to listen to their stories and consider how to support their educational experience

Wright, Alex (2018) ‘Just Bead It’: hearing the voice of children with medical conditions to listen to their stories and consider how to support their educational experience. DEdCPsy thesis, University of Sheffield.

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Abstract

Research indicates a rise in children with medical conditions (CMC) (Canter & Roberts, 2012; Jackson, 2013).

Chronic illness and healthcare needs can impede access to daily life and disrupt school attendance, impacting academic, emotional and psychosocial development (Yeo & Sawyer, 2005; Edwards, 2010; Kazak & Noll, 2015).

As discourse around CMC is often dominated by illness, I considered it important to hear the child’s voice to appreciate their subjective experience and preferred identity.

This study employed a narrative approach from a social constructionist perspective to hear CMCs’ multi-stranded stories.

Participants included two children with identified medical needs (chronic fatigue syndrome and muscular dystrophy) who had experienced periods of school absence.

Interviews were conducted using the ‘Beads of Life’ approach, developed by Portnoy, Girling & Fredman (2016), to elicit the child’s ‘life story’ and ‘challenge story’.

The approach uses beads as prompts to enable children to tell their stories in ways that make them stronger, repositioning the child as the expert in their own life.

Stories were analysed using narrative holistic content, holistic form and categorical content perspectives to explore their experiences and the meaning ascribed to these.

Findings from the research indicate that whilst risk and challenge is experienced, support from school, family and peers can relieve the injurious outcomes associated with medical conditions.

A need for agency, social connectedness and a sense of ‘normalcy’ is also indicated.

Implications for educational and psychological practice are discussed, valuing the ‘Beads of Life’ approach to elicit child voice, inform systemic practice and enhance the school experience for CMC.

Item Type: Thesis (DEdCPsy)
Academic Units: The University of Sheffield > Faculty of Social Sciences (Sheffield) > School of Education (Sheffield)
The University of Sheffield > Faculty of Social Sciences (Sheffield)
Depositing User: Miss Alex Wright
Date Deposited: 16 Aug 2018 16:06
Last Modified: 16 Aug 2018 16:06
URI: http://etheses.whiterose.ac.uk/id/eprint/21244
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Webdog · Aug 22, 2018

David Bell wrote about something similar for children with ME/CFS. His advice to children was to simply accept that no one (including doctors) would believe their illness, and to just "get on with your life".

I have mixed feelings about Dr. Bell's advice.

David S. Bell said:

By far the most effective treatment is that the provider understand the disease and be supportive of the patient by advice or medications which assumes acceptance of the severity yet is accurate concerning emotions.

As an example I would offer this anecdote. A twelve year old boy was seen for his first visit and as he came down the hall, he was dragging his left leg. I did a careful history and a careful physical exam. When we were finished I said that he had two diagnoses: 1) ME/CFS and 2) hysterical neurosis. “What?” he said, incredulous, “You are like everyone else who does not believe that this illness is real”

I answered, “I am very sure you have ME/CFS, and that it is a real disease, and that your activity is impaired. But you do not need to drag your leg when you walk. That is the only thing you are making up.”

After a bit he said, “OK, but I do that because no one believes I am sick.”

I said, “No one will believe you are ill because of your leg. In fact it will just make it harder for you in the future. You need to understand that at this time doctors do not accept or believe in ME/CFS, and you need to accept this as a present reality and get on with your life.” He did just that and immediately stopped limping. Over the next few years he did well and returned to good activity, about 75% of normal activity. And he did understand that no one would believe his illness – he dropped the self-pity and became realistic about his future.

Children and teens feel that they have to prove their illness to medical providers, and that is not possible.
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https://www.omf.ngo/2016/06/25/mecfs-in-children-by-dr-david-s-bell-2/

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Hearing the voice of children with medical conditions to listen to their stories & consider how to support their educational experiences (1 with CFS)

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