I share with you an abstract of my TER “Neurofibromatosis Type 1 (NF1) : Mental and Physical Representations in Illness Process. Findings and Therapeutic Possibilities”.
This qualitative study consists by an in-depth analysis of children cases who suffer from a rare skin disease : neurofibromatosis type 1 (or Reckinghausen illness). First of all, this sickness may be sporadic, or in a family form. Moreover, it is visible and evolutive : many cutaneous neurofibromas and café-au-lait spots who can engender a progressive disfigurement. In addition, chronic pain can be very invalidant and a range of complications can occur (cardiac or pulmonary disorders…) What’s more, psychiatric disorders are frequent too (TDAH, anxiety, depression…)
From research papers about health related quality of life, specifically in adolescents, we have explored younger children feelings, aged by 7 to 11, in psychological, corporal and relational dimensions. The aim of this study was to search how children cope and live with these disease : their mental representations, their body image, their personal and interpersonal fears, their abilities to regulate their emotions and to be resilient.
Thanks to the quality of life test KIDSCREEN© (Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J. and the European KIDSCREEN Group. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5 (3), 353-364. ), and semi-directive interviews with a family drawing test, we have collected implicit and explicit information to highlight how children adapt to NF1 and how they integrate this disease in their life experience.
Finally, we met six children and we remarked many body disproportions in their drawing tests (disproportionately members, gender or generation indifferenciation) and specific anxieties in their feelings (neurofibromas would pierce themselves…). We also observed the impact of parent’s speech in children’s competences. Furthermore, our participants trivialized seriousness in this pathology : they said it was not grave or had magic thoughts to conserve good mood or quality of life.
To summarize, our findings afford us to make links with specific signs of this sickness and their prints in body and self image, in order to explain personal and interpersonal disturbances (disfigurement, sense of shame and withdrawal). Then, we can understand articulations between some paradoxical representations of this disease and its integration in body, experience, and identity.
Our conclusions provided interesting opportunities in psycho-therapeutic work, such as interventions about mind, body and emotions, but also systemic therapies in family forms.
Keywords : Neurofibromatosis type 1, children, anxiety, body image, representations, emotions, quality of life.
The word I’ve learned :
I share with you : je partage avec vous
In-depth analysis : une analyse approfondie
What’s more : qui plus est
Occur : survenir
To trivialize : banaliser
Prints : empreinte