TY - JOUR

T1 - 'Not a film about my slackness'

T2 - Making sense of medically unexplained illness in youth using collaborative visual methods

AU - Østbye, Silje Vagli

AU - Kvamme, Maria Fredriksen

AU - Wang, Catharina Elisabeth Arfwedson

AU - Haavind, Hanne

AU - Waage, Trond

AU - Risør, Mette Bech

PY - 2020/1

Y1 - 2020/1

N2 - Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic-performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter's medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.

AB - Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic-performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter's medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.

KW - Adaptation, Psychological

KW - Adolescent

KW - Chronic Disease/psychology

KW - Fatigue/etiology

KW - Female

KW - Headache/etiology

KW - Humans

KW - Medically Unexplained Symptoms

KW - Narration

KW - Quality of Life

KW - Social Isolation

KW - Videotape Recording

U2 - 10.1177/1363459318785696

DO - 10.1177/1363459318785696

M3 - Journal article

C2 - 29978724

VL - 24

SP - 38

EP - 58

JO - Health (United Kingdom)

JF - Health (United Kingdom)

SN - 1363-4593

IS - 1

ER -