Working with adolescents with a chronic illness: How can we implement advice from young people

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Working with adolescents with a chronic illness
How can we implement advice from young people?
Lynley Wicks, Consultant Clinical
PsychologistAnne Mitchell, Consultant Paediatric
Oncologist Wellington Hospitallynley.wicks_at_ccdhb.
org.nz
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• Care of the adolescent no longer rests only
  on survival, but rather on interventions to
  prevent long term physical or psychosocial
  problems.
• (Çavusoglu, 2000)

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Overview

• Chronic illnesses in adolescence
• Factors affecting outcome
• Developmental tasks of adolescence
• How illness interrupts developmental tasks
• What adolescents want
• Clinical implications

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Chronic illnesses in adolescents

• Diabetes
• Cystic fibrosis
• Asthma
• Renal failure
• Cancer

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Chronic illnesses in adolescents

• Cancer
• Develops more in 15-25 yrs than in those lt15 yrs
• Some cancers peak in incidence 13 - 24 years
• Clinical outcomes for adolescents with cancer is
  poorer than in other age groups
• 5 year survival improvement 1975-1998 in US
• children and in adults 45 years of age and older
  1.74
• adolescents 15-19 years 0.91

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Factors affecting outcomes

• Disease factors
• Differences in biology
• Poor understanding of patients and illness
  biology contributes to minimal advances in
  treatment

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Factors affecting outcomes

• System factors
• Fall into no mans land between paediatrics and
  adults
• Treatment by physicians less familiar with the
  disease
• Less current research in this age group
• Delays in recognition of disease
• Body going through lots of changes

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Factors affecting outcomes

• Patient factors
• Delays in seeking medical attention for symptoms
• Sees self as invulnerable to serious disease or
  injury
• Symptoms can be attributed to fatigue or stress
• Embarrassed by symptoms
• Lack of medical insurance and financial resources
• Poor compliance with treatment

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Discussion

• What are the developmental tasks of adolescence?
• How might having a chronic illness interfere with
  successful achievement of these tasks?

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Developmental Tasks of Adolescence

• Establishment of Self-Image
• Gaining Independence
• Establishing Peer Relationships
• Establishing Sexual Identity
• Creating Plans for the Future

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Research

• Aim
• To examine the adolescent cancer experience
  from the perspective of survivors
• Participants
• 10 young adults who received treatment during
  teenage years
• Procedure
• In-depth semi-structured interviews
• Data Analysis
• Thematic analysis of interview transcripts

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How does having a chronic illness interrupt these
tasks?

• Self image effected
• Physical side effects of illness or treatment
• Not at physical peak
• Losing my hair was a big shock. I was scared what
  people would think
• My scars are my battle mark. That means I can
  tell interesting stories if I cant be bothered
  telling the truth.
• I just really couldnt be bothered doing anything
  cause I was always sick all the time

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How does having a chronic illness interrupt these
tasks?

• Body Image

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How does having a chronic illness interrupt these
tasks?

• Mistrust in body
• Cant rely on body
• Fertility
• I found my body wasnt functioning as well ..
  Some of your body parts would give out like your
  legs and your arms and you just give up
• Its always something in the back of my mind,
  like am I sterile, am I not?

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How does having a chronic illness interrupt these
tasks?

• Lack of independence
• Powerlessness
• Lack of privacy
• I lost so much control during the time and I had
  to rely on everybody else
• I basically had to surrender all control over to
  certain doctors
• You cant do what you want to with someone else
  in the room

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How does having a chronic illness interrupt these
tasks?

• Less socialising
• Less opportunity to develop relationships
• More time with parents
• I was in hospital all the time and sort of lost
  touch with a lot of my friends
• You see who your real friends are and who keeps
  in touch and helps you through things
• My parents are bit more worried about me

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How does having a chronic illness interrupt these
tasks?

• Interruptions to education
• I had to kind of focus on school more. I tried
  really hard and got a lot of help with tutoring
  and then got my schoolwork back on track
• I didnt really, couldnt really be bothered with
  school after that and just wasnt really motivated

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How does having a chronic illness interrupt these
tasks?

• Future is uncertain

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How does having a chronic illness interrupt these
tasks?

• Future is uncertain
• I was going to go to university but because I
  didnt put in the effort...I didnt get
  university entrance
• I have gone through that and become more focussed
  on what I want to sort of become

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• What do you think would help adolescents cope
  with a chronic illness?

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What adolescents want
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Facilities

• To be with other adolescents
• Actually get adolescents together going through
  the treatment maybe it could like build up
  support networks and maybe you could make friends
• A dedicated adolescent ward would be the best
  thing its a very overlooked group. There are
  the babies and then there are the oldies and
  there is no real middle ground for adolescents
  with cancer

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Facilities

• Age appropriate activities
• There wasnt really much to do when you are stuck
  to a drip 24/7
• Keep them occupied and try not let them think
  about their illness

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Information Provision

• To be talked to
• Whoever you are seeing is not a patient, they are
  a person... Talk to them like they are human
  beings who have feelings and are going probably
  through one of the most traumatic experiences
  that they will ever go through
• Talk to us. Dont talk to the parents or anything
  like that. The parents are not the one that is
  receiving the treatment

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Information Provision

• To receive age appropriate information
• The surgeon just handed me stuff which I didnt
  really understand, they didnt explain it
• It frustrated me a lot the uncertainty of
  knowing what was going to happen to me

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Psychosocial Supports

• To be able to speak to someone
• Talk to someone because it is so easy to get
  depressed. I think it is natural to get depressed
  after such a life changing thing I think that is
  underestimated what that can do. I think it is so
  easy for people to think that it wouldnt do
  much, but it actually does
• Dont be afraid to ask for help if you need it

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Discussion

• How could you implement this advice in your
  workplace or interactions with adolescents with a
  chronic illness?

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Implications for clinical practice

• Facilities for adolescents
• Treat adolescents together
• Provide activities specifically for adolescents
• Staff interactions with adolescents
• Adolescent friendly attitudes
• Talk with the young person directly
• Provide age-appropriate information

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Implications for clinical practice

• Provide psycho-social supports
• Establish rapport early in treatment
• Continue follow-up post treatment
• Enhance a sense of control
• Involvement in treatment-related discussions
• Offer options
• Provide flexibility
• Enhance problem solving strategies
• Develop confidence in decision making

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Acknowledgements