Problems and solutions: parents' and childrens accounts of adhering to chest physiotherapy for cysti

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• Problems and solutions parents' and childrens
  accounts of adhering to chest physiotherapy for
  cystic fibrosis
• Coyle, J. Dowell, J. Morison, M. Smith, A.
  Dhouieb, E. Mukhopadhyay, S. Williams, B.
• Funded by the Chief Scientist Office (Scottish
  Executive).

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Children with serious chronic illness

• Problems in adhering to treatment regimes.
• Study of children with cystic fibrosis showed 50
  had problems in fully adhering to regimes
  (Chappell and Williams 2002)

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Cystic Fibrosis

• Hereditary disorder
• Body secretes thick, sticky mucus
• Clogs lungs, pancreas
• Problems breathing, digestion and infection
• 1 in 2,500 children in UK

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Treatment

• Removal of airway secretions through chest
  physiotherapy and inhaled medication.
• Antibiotics.
• High protein diet.
• Vitamins.
• Digestive enzymes.

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Aims

• 1. To identify the problems of adhering to
  physiotherapy regimes for children and parents.
• 2. To identify ways of supporting children and
  parents.

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Sampling

• Sampling frame - cohort of over 100 children and
  young people attending regional clinics in the
  Tayside and Lothian areas of Scotland.

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Sample

• Sex
• Females 18
• Males 14
• Total 32.

• Age
• 7-9 yrs 12
• 10-13 yrs 8
• 14-17 yrs 12.

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Symptom
severity

• FEV1 (forced expiratory volume in one second) as
  a .
• 
  N
• Mild 70 and above. 13
• Moderate 51-69. 10
• Severe 20-50. 9

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Data Collection

• Children and parents interviewed in depth
  (separately).
• Interviews lasted from 20 minutes to 3 hours.
• Interviews audio recorded and transcribed.

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Data analysis

• Framework (5 stages)
• Familiarisation
• Identifying a thematic framework
• Indexing
• Charting
• Mapping and interpretation

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Findings

• Transforming the perception of time in
  physiotherapy. Moving from time consumption to
  time investment and spending.

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PROBLEMS

• Restrictive
• Time consuming
• Threat to identity
• Boring

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Restrictive

• Exclusionary.
• Unfairness
• Inequality.

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Restriction
exclusion

• Intand is there anything bad about having
  having cystic fibrosis?
• Paul Em, well, yes, and sometimes if youve got
  to come in and do your physio or that, and
  sometimes it wastes some of your playing time.
  And I dont get to stay out as late.em, cos, all
  my friends are out playing and Im inside, and it
  could be a really nice day. Em, you feel like
  youre getting left out and that And they could
  be doing something fun, and youre not.
  (Interview 30, 12 year old male Mild)

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Findings

• Time consuming.
• Disrupting daily tasks, activities, roles and
  responsibilities.

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• Karen .. . as Im a teenager now its even more
  difficult for them to get me to do it. I have
  other things to do now, I have friends to see and
  places to go and things to do and things like
  that. But when I was like a toddler none of that
  mattered, you know. (Interview 2, 15 year old
  female, severe)

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Findings

• Threatening to non different identity
• Disrupts normalising roles and
  responsibilities.
• Signifies difference.
• Socially stigmatising.

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Threat to identity

• Int How do you feel about that?
• Stephen I hate I it (creon). I just wish I
  didnt have to take it. It just feels like its,
  it makes me feel different from other people and
  I just, you know, and I just want to be like them
  really, and when people ask me what they are, I
  just dont really want to tell them.
• Int Is there any other ways that having CF makes
  you feel different?

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Contd

• Just having to do my physio twice a dayits
  quite hard when Ive got friends staying or
  something, its like I have to go through to the
  spare room.. , whereas if I didnt have CF I
  wouldnt have to, I just hate having to do all
  the stuff I have to do. (Interview 10, 13 year
  old male, moderate)

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• BORING!

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Boring

• Int Do you think theres any way, anything that
  would encourage young people to do it more often?
• Pauline I dont know cos its like, I suppose
  there is only one way you can do it, you know,
  when I think people would sort of get bored cos
  like, you want to be up and about doing
  something, like, but youre just lying there, you
  get really bored. Cos in the morning especially
  because I get like em, bored cos I know that Ive
  got things to do you know, and I want to get up
  and do them instead of lying here for 20 minutes.
  (Interview 6, 14 year old female, mild)

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Meaning of
Boredom

• Passivity.
• Inactivity.
• Entrenchment.
• Lack of effect.
• Absence of movement

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Incentives

• Making physio fun (Young children)
• Multipurpose equipment.
• Physiotherapy games.
• Earned treats.
• Other activity performance.

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Supporting
Young people

• Maintaining normal identity.
• Enabling
• Priority reappraisal.
• Redefining time from consumption to
  investment/spending.

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Summary of the problem

• Physiotherapy perceived as boring, restrictive,
  isolating, time consuming activity which
  symbolises difference

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Conclusion

• Redefinition of physiotherapy
• Inclusive.
• Enabler, promoting normal identity.
• Informing a social rationale which redefines
  time in physiotherapy from consuming to
  investing and spending time.

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• Thanks to the participants for their time and
  effort in participating in this study. And to the
  following professionals for their advice and
  practical assistance Alison Smith, Elaine
  Dhouieb, Gail Milne, Aileen Mallinson Gillian
  Naysmith, Lori McDougal, Gemma Mitchell and
  Martha MacDonald.