I know you can't see it but it hurts: A research study of the experiences of young people, their parents and healthcare professionals who live and work with medically unexplained physical symptoms

Fletcher, Paul (2014) I know you can't see it but it hurts: A research study of the experiences of young people, their parents and healthcare professionals who live and work with medically unexplained physical symptoms. DSysPsych thesis, Tavistock and Portman NHS Foundation Trust. Full text available

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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 physician- patient 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.

Item Type: Thesis (DSysPsych)
Additional Information: A thesis submitted in partial fulfillment of the requirements of the University of East London in collaboration with the Tavistock and Portman NHS Foundation Trust for the Professional Doctorate in Systemic Psychotherapy
Uncontrolled Keywords: Professional Doctorate in Systemic Psychotherapy, MUPS, Thematic Analysis, TA, and Dialogical Narrative Analysis, DNA
Subjects: Children, Young People and Developmental Pyschology > Paediatrics
Families > Families - Psychology
Groups & Organisations > Occupational Groups
Health and Medical Sciences > Patient Care
Department/People: Children, Young Adult and Family Services
URI: https://repository.tavistockandportman.ac.uk/id/eprint/994

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