Presentation by: Ruth Davidson

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Presentation by Ruth Davidson Presentation
Title The Experience of Children who have a
Brother or Sister with a Congenital Heart
Condition
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Acknowledgements Suzanne Guerin Claire
Griffin University College Dublin Catherine
Matthews Deirdre ONeill Sally Heron Our Ladys
Childrens Hospital Dublin Heart Children
Ireland Office of the Minister for Children
and Youth Affairs
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• Existing Research Evidence
• Reasonable (relatively small) body of research
  exists
• Suggests this group of children are at risk for a
  wide range of impacts and outcomes
• Mostly negative
• Anxiety, depression, decreased parental
  attention, academic difficulties, peer problems,
  behaviour problems, somatic complaints
• But some positive(?)
• Maturity, increased empathy, responsibility,
  closer sibling relationship

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• Background and Previous Research
• Illness groups most usually studied are cancer,
  diabetes and asthma
• All other illnesses (e.g., cardiac, renal,
  arthritis) represented by a very small number of
  studies
• Some self-report but traditionally dominated by
  maternal report
• Most research emphasises particular outcomes and
  in many instances psychopathology
• CHD research very much a minority illness
  group in family research
• We could identify no published studies pertaining
  specifically to children who have a brother or
  sister with CHD
• Two Irish studies directly relevant one
  concerned with disability, and one more general
  chronic illness study that included some data
  from well children

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• The Present Study
• To explore the self-reported experiences of
  children who have a brother or sister with a
  congenital heart condition
• Mixed methods (embedded qualitative design),
  drawing on a child-centred ethos.
• Children qualitative interview plus standardised
  measures (SDQ and PedsQL)
• Parents two standardised measures (IOF and FAD)
• Families recruited through OLCHC and Heart
  Children Ireland (call for expression of
  interest)
• All data collected during a once-off meeting in
  the family home
• Participants 11 children (3 male) aged 7-17
  years (M11.5, SD3.64)

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The Research Questions
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Key Findings Overview of Main Topics
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Overall Impression Life as normal but
punctuated by extremely stressful and disruptive
illness-related events hospitalisations,
medical emergencies, surgeries.
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• Impact of the Illness
• Acute awareness of the impact of CHD on
  themselves and their family across the spectrum
  of family life including emotional impact,
  impact on work, lifestyle and care arrangements.
• In terms of impact on self - wide range of
  emotions reported in terms of emotional impact on
  self sadness, worry, annoyance, fear, pride.
• I was worried at the start, very worried
• Im proud of sister cos she lived through
  everything
• Impact on others in the family
• and my parents were real, kind of like...on
  edge
• and Mum stayed in the hospital with him most
  nights
• Findings do not suggest an overall negative
  impact or psychopathology, but rather a sense of
  normalcy and adaptation, coupled with the stress
  and disruption of illness-related events.

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• What may contribute to or challenge adaptation?
• Illness-related factors for example, treatment
  protocol, predictability, length of
  hospitalisation, medical paraphernalia and
  physical appearance.
• Own understanding, information, knowledge,
  beliefs and cognitions about the illness.
• we didnt really know what was going on and
  that bothered us
• Family factors parental support, communication,
  extended family support, extended separation of
  family unit.
• Social support
• usually my friends come up and they do loads
  of stuff with me and make me feel better
• External events for example, holidays, exams,
  stories in the media.
• Health care professionals trust and confidence
  in doctors and nurses, inclusion in care.

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• Coping
• Behavioural Coping
• Keeping busy/ active Using food and treats Fun
  activities or games Information seeking (ask
  questions, do research) Praying with family
  members
• structure is so important, because it keeps you
  goingyou have to keep going
• Cognitive Coping
• Perspective taking Avoidance/ denial Comparison
  with others Trust in medical staff
• Beside brother in the room was a boy, and he
  was still sickand I just remember like how lucky
  we were to have brother better rather than him
  still sick
• Emotion-focussed coping
• Crying Bottling it up Feeling helpless
• crying was a bad thing but locking it up was
  also a bad thing cos I did try that a couple of
  times
• NB The role of family

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• Take-Home Messages
• Children can and do adapt to the presence of CHD
  in their family- deficit-based or
  psychopathological approaches may need to be
  tempered.
• Hospital-related experiences and memories are
  important
• The family system has a crucial role to play and
  supports may be best targeted at this level.
• Information and communication about the illness
  need careful thought- match to age, cognitive
  ability, emotional ability and coping style.
• Illness variables are potentially important
  factors to consider how might the needs of an
  individual differ because of this and
  implications for other illness groups.
• Identifying risk -Children lacking in essential
  family and social supports may be at greater risk
  for intense distress and perhaps difficulty
  coping.

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Questions?