Presentation by: Ruth Davidson

Presentation Title: The Experience of Children who have a Brother or Sister with a Congenital Heart Condition

Acknowledgements

Suzanne GuerinClaire GriffinUniversity College Dublin

Catherine MatthewsDeirdre O’NeillSally HeronOur Lady’s Children’s Hospital Dublin

Heart Children Ireland

Office of the Minister for Children and Youth Affairs

Existing Research Evidence

oReasonable (relatively small) body of research exists

oSuggests this group of children are at risk for a wide range of impacts and outcomes…

oMostly negative…oAnxiety, depression, decreased parental attention, academic difficulties, peer problems, behaviour problems, somatic complaints

oBut some positive…(?)oMaturity, increased empathy, responsibility, closer sibling relationship

Background and Previous Research

oIllness groups most usually studied are cancer, diabetes and asthma

oAll other illnesses (e.g., cardiac, renal, arthritis) represented by a very small number of studies

oSome self-report but traditionally dominated by maternal report

oMost research emphasises particular outcomes and in many instances psychopathology

oCHD research – very much a “minority” illness group in family research

oWe could identify no published studies pertaining specifically to children who have a brother or sister with CHD

oTwo Irish studies directly relevant – one concerned with disability, and one more general “chronic illness” study that included some data from well children

The Present Study

oTo explore the self-reported experiences of children who have a brother or sister with a congenital heart condition

oMixed methods (embedded qualitative design), drawing on a child-centred ethos.

oChildren: qualitative interview plus standardised measures (SDQ and PedsQL)

oParents: two standardised measures (IOF and FAD)

oFamilies recruited through OLCHC and Heart Children Ireland (call for expression of interest)

oAll data collected during a once-off meeting in the family home

oParticipants: 11 children (3 male) aged 7-17 years (M=11.5, SD=3.64)

The Research Questions

Key Findings: Overview of Main Topics

Overall Impression

Life “as normal” but punctuated by extremely stressful and disruptive illness-related events – hospitalisations, medical

emergencies, surgeries.

Impact of the Illness

oAcute 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.

oIn terms of impact on self - wide range of emotions reported in terms of emotional impact on self– sadness, worry, annoyance, fear, pride.

o “I was worried at the start, very worried” o “I’m proud of *sister* cos she lived through everything”

oImpact on others in the familyo“…and my parents were real, kind of like...on edge…” o“…and Mum stayed in the hospital with him most nights…”

oFindings 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.

What may contribute to or challenge adaptation?

oIllness-related factors – for example, treatment protocol, predictability, length of hospitalisation, medical paraphernalia and physical appearance.

oOwn understanding, information, knowledge, beliefs and cognitions about the illness.

“we didn’t really know what was going on and that bothered us”

oFamily factors– parental support, communication, extended family support, extended separation of family unit.

oSocial support“…usually my friends come up and they do loads of stuff with me and make me feel better…”

oExternal events – for example, holidays, exams, stories in the media.

oHealth care professionals – trust and confidence in doctors and nurses, inclusion in care.

Coping

Behavioural CopingoKeeping busy/ active; Using food and treats; Fun activities or games; Information seeking (ask questions, do research); Praying with family memberso“…structure is so important, because it keeps you going…you have to keep going”

Cognitive CopingoPerspective taking; Avoidance/ denial; Comparison with others; Trust in medical staffo“Beside [brother] in the room was a boy, and he was still sick…and I just remember like how lucky we were to have [brother] better rather than him still sick…”

Emotion-focussed copingoCrying; Bottling it up; Feeling helplesso“…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

Take-Home Messages

oChildren can and do adapt to the presence of CHD in their family- deficit-based or psychopathological approaches may need to be tempered.

oHospital-related experiences and memories are important

oThe family system has a crucial role to play and supports may be best targeted at this level.

oInformation and communication about the illness need careful thought- match to age, cognitive ability, emotional ability and coping style.

oIllness variables are potentially important factors to consider – how might the needs of an individual differ because of this and implications for other illness groups.

oIdentifying risk -Children lacking in essential family and social supports may be at greater risk for intense distress and perhaps difficulty coping.

Questions?