title: I Know You Can't See It But It Hurts : A Research Study into the Experiences of Young People, Their Parents and Healthcare Professionals, Who Live and Work with Medically Unexplained Physical Symptoms
Creators: name: Fletcher, Paul
Publisher: name: The University of East London
Year: 2014

description: In this study I have explored first-person stories of young people, parents and
healthcare professionals about their experiences of living and working with
medically unexplained physical symptoms (MUPS). MUPS claims large
amounts of healthcare professionals’ time and technological resources in
primary and secondary healthcare. As a consequence there has been an
increasing amount of research interest in MUPS sufferers in recent years.
However, few studies have explored the experience of MUPS sufferers from a
social constructionist, dialogical and narrative epistemological standpoint.
A cross-disciplinary review of the literature on MUPS revealed the experiences
of young people and their families to be similar to those with a diagnosis of
chronic illness and their families. A dearth of qualitative studies have explored
the first-person accounts of young people, their parents, and healthcare
professionals who live and work with the condition. Research aims were
generated following the review of the literature:
 To explore the meanings that young people, their parents and
healthcare professionals attach to their experience of MUPS in the
absence of a medical diagnosis
 To explore stories constructed from these experiences by young
people, their parents, and healthcare professionals about the impact of
MUPS upon identity and significant relationships
 To discover the discourses and narrative templates that inform
healthcare professionals’ practice with young people and their families
who live with MUPS
 To identify cultural and institutional discourses and narrative templates
from focus group members’ stories of experience; that position or
marginalise MUPS sufferers and their families.

The focus group method was chosen for data collection. Seven focus groups
were held in a Paediatric Liaison Department (PLS) in a Regional Hospital in
the East Midlands, U.K. Young people and parents were recruited to the focus
groups from historical casework of the PLS Department. Healthcare
professionals were recruited from the hospital paediatric and PLS teams. The
focus groups involved two groups for adolescents with MUPS and two groups of
parents of adolescents with MUPS. Three other focus groups involved
healthcare professionals who work with adolescents and their families with
MUPS.
The focus group discussions were videotaped and transcribed by the
researcher and two forms of analysis were employed: Thematic Analysis (TA)
and Dialogical Narrative Analysis (DNA).
The two forms of analysis produced multiple literal themes and implicit stories
abstracted from focus group members’ accounts. A major theme for young
people and parents was their feelings of anger and frustration following the
initial medical interview with their doctors. Young people and parents reported
they were not only disbelieved by the doctor about the existence and severity of
the symptoms, but the doctor attributed negative attributions about their
presentation such as ‘You’re lazy’, ‘It’s psychosomatic’, ‘All in your head’,
‘Fussy parent’. Without a diagnosis concerns of the young people and their
parents were not legitimised. Young people and parents lost confidence in
medical institutions. Young people responded by withdrawal and increasing
social isolation. Many parents took on the role of advocacy in an attempt to
restore their child’s credibility and the family’s integrity.
Some of the doctors interviewed spoke about the dearth of training in MUPS in
both paediatrics and psychiatry. They suggest that managing MUPS patients
can be very time-consuming for hard-pressed clinicians. Within the medical
encounter they sometimes feel pressured or ambivalent about whether to
continue to investigate despite previous negative results. Doctors also stated
that MUPS patients can generate anxiety and uncertainty in clinicians.

More main themes emerged including recognising MUPS as primarily ‘an idiom
of distress’ and the shortcomings of the biomedical paradigm in addressing the
problems and dilemmas of MUPS sufferers, their parents and healthcare
professionals.
In the Discussion Chapter I propose a model of training and CPD for healthcare
professionals. The model proposes introducing a hermeneutic approach and
open emotional postures to compliment the deductive role of the diagnosing
physician. It is proposed that by accessing concepts from both the scientific and
phenomenological paradigms healthcare professionals will reduce the
possibility of incongruence and potential for impasse within the physicianpatient
relationship.
In the conclusion of the report a number of recommendations are given based
upon the outcomes of the study to introduce the benefits for professionals in
adding theoretical concepts from systemic family psychotherapy, dialogical and
narrative theory to inform and promote a hermeneutic discursive centred
practice with MUPS sufferers and their families.