Exploring culture and illness

A grounded theory exploration of cultural and spiritual influences on adjustment in adolescents with liver disease.
The evidence-base for adjustment in adolescents with liver disease is minimal, but treatment non-adherence in adolescent liver transplant recipients is known to range between 17-53%, increasing medical complication risks. Evidence has also shown that spirituality impacts on illness perceptions and behaviours of adolescents with other diseases.
In this study, ten semi-structured interviews were conducted with 16-24 years olds, recruited from a regional liver clinic in the UK. Half were liver transplant recipients.
The study found that navigating cultural expectations was challenging, particularly around education, employment and socialising (e.g. participation with peers and avoiding alcohol). Several participants reported an illness-related spiritual or socio-cultural crisis, sometimes resulting in non-adherence. This seemed to be followed by a turning point, eventually leading to a state of acceptance, personal development and possibly, spiritual growth. Trusted individuals were often instrumental in helping participants to overcome difficulties. However, for some, adjustment was transitory. As such, this appeared to be a cyclical process, entangled with universal adolescent developmental tasks.
The study concluded that more exploration is required on treatment adherence and overall functioning in adolescents with liver disease, taking into account socio-cultural and spiritual influences.