`I wouldn`t wish this on anyone.

‘I wouldn’t wish this on anyone.’ An exploration of the lived experience of young adults
with immune mediated kidney disease
Logan S, Peracha J, Hewins P, Morgan MD, Harper L.
University Hospitals Birmingham NHS Foundation Trust, Queen Elizabeth Hospital
Objectives: To explore the experience and perspective of young adults with immune-mediated
systemic conditions involving kidney disease, including their adaptation to chronic illness and
their experience of health care provision. To inform the provision and development of age
appropriate health care for young people with long-term conditions.
Methods: Pilot qualitative study with two focus groups of young adults (16-25years) with a
diagnosis of immune-mediated systemic condition (SLE/ANCA associated Vasculitis). A total
of 7 young adults participated (4 males, 3 females, age ranges (18-24), median age 21, 3 patients
with SLE and 4 patients with ANCA associated Vasculitis)
Results: All participants described the process of adapting to loss of good health status as a
journey requiring adaptation of their previously perceived ‘normal’ state and functioning in
order to, ‘re-learn who I am,’ and cope with the impact of the condition. Participants described
anxiety about the future, particularly around the time of diagnosis and feeling overwhelmed
with information, treatment and medication regimes. Over time coping strategies are developed
however awareness of having an ‘invisible illness’ and lack of understanding of peers and the
impact of symptoms including fatigue can negatively affect young people. Living with immune
mediated disease may result in missing out on usual young adult activities such as going out and
socialising. Young people value continuity of care and provision of age-appropriate health care
facilities, describing feeling isolated when cared for within mainstream adult out-patient health
care setting. Young adult clinics also allow young people to meet others of similar ages with
similar conditions, thus also offering a means of peer support and shared experience to develop.
Young people prefer a ‘one-stop’ clinic approach where information and advice can be sought
on all aspects of their healthcare needs and health promotion advice. Young people are keen to
develop peer support for others newly diagnosed with immune mediated kidney disease and to
have access to clear easily understood information. The clinical nurse specialist role is valued
by young people as an accessible point-of-contact, someone who is easy to talk to and a reliable
source of information, advice and support.
Conclusions: Young people with immune-mediated conditions face complex challenges in
adjusting to living with a long-term condition whilst also completing the developmental tasks of
young adulthood, moving from dependence upon parents to independent living and developing
independent relationships. Young adult clinics are a valued means of providing age-appropriate
care for young adults.