Healthy living for young people with a chronic illness: finding the balance

Many young people with a chronic illness have difficulty in following medical
prescriptions and regimes and in finding a balance for a healthy and good life.
Adolescence is a developmental period characterized by many and fast changes,
among which a strive for autonomy. Research indicates that many young people
with a chronic illness struggle in this turbulent developmental period to find
a balance between their illness and the life they want to lead (Holmbeck,
2002). For instance, adolescents with diabetes as a group have the worst
glycemic control of all age groups (Morris et al., 1997). Health care
professionals indicate they have great difficulty in keeping young people on
the 'right track' with respect to the treatment of their illness. However,
professionals also indicate that there are young people who succeed in finding
a balance and in adequately integrating their illness into their daily life. In
this study, we want to learn from this latter group of young people.

The objective of this study is to learn from young people with a chronic
illness (diabetes or progressive muscular disease) who have found a balance
between taking good care of their illness and having a good life. This study
examines how these adolescents define a good life and sets out to identify
which factors (skills, competencies, life style) contribute to leading a good
life in the face of disability posed by illness and treatment.

This qualitative study consists of two parts. In part 1, online focus groups
are held with 60 adolescents with a chronic illness: 30 adolescents with
diabetes (3 groups of 10 participants) and 30 with progressive muscular disease
(3 groups of 10 participants). These illnesses were selected because they
differ in disease burden and in opportunities for personal and social
development (school career, leisure activities): muscular disease has a more
disabling effect on functioning that diabetes. The focus groups will focus on
the adolescents' opinions about the following themes: how would you define a
good life? why do you feel your life is good? how do you stay in control over
your life? which choices do you make concerning your illness and treatment?
which skills or qualities help you lead a good life?

The approval of the METC for the second part of the study will be sought later
in the study. In part 2, the adolescents from part 1 participate in a photo
workshop and a drama workshop. As the focus groups in part 1 fully rely on
written language, the new methods in part 2 are used to complement the results
of part 1 by making use of other modes of expression. Prior to the photo
workshop the adolescents are asked to take pictures that are relevant to the
central themes of the study (which things/people/events make you feel good
about your life: what helps you cope with your illness? who or what makes you
feel stronger?). In the photo workshop, the participants present their pictures
and jointly reflect on their experiences and perspective. In the secodn
workshop drama is used actively involve the participants in further providing
insight into their experience and perspective, for example by playing typical
situations and brainstorming helpful responses (e.g., thought processes) to
these situations.

Participation does not hold risks and does not take much time. From their
personal computer at home, participants take part in online focus groups on
three consecutive days (about 1,5 hour per focus group). In addition, they are
expected to participate in a photo workshop and a theatre workshop, which are
held on one day and will each take three hours; for this part of the study we
will seek the approval of the medical-ethical committee at a later stage in the
project.
The questions posed will not be intrusive, and participants can refrain from
answering. Also, there is no intervention and participants will not be
subjected to a particular way of behaving. A benefit for the participants may
be that their opinions are being asked and valued and that, at a later stage
(in a potential follow-up project), the results may be used for developing
interventions for young people with a chronic illness who have not yet found a
balance between taking care of their illness and having a good life.