2. Presentation by: Ruth Davidson Presentation Title: The Experience of Children who have a Brother or Sister with a Congenital Heart Condition

3. Acknowledgements Suzanne Guerin Claire Griffin University College Dublin Catherine Matthews Deirdre O’Neill Sally Heron Our Lady’s Children’s Hospital Dublin Heart Children Ireland Office of the Minister for Children and Youth Affairs

4. Existing Research Evidence o Reasonable (relatively small) body of research exists o Suggests this group of children are at risk for a wide range of impacts and outcomes… o Mostly negative… o Anxiety, depression, decreased parental attention, academic difficulties, peer problems, behaviour problems, somatic complaints o But some positive…(?) o Maturity, increased empathy, responsibility, closer sibling relationship

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

6. The Present Study o To explore the self-reported experiences of children who have a brother or sister with a congenital heart condition o Mixed methods (embedded qualitative design), drawing on a child-centred ethos. o Children: qualitative interview plus standardised measures (SDQ and PedsQL) o Parents: two standardised measures (IOF and FAD) o Families recruited through OLCHC and Heart Children Ireland (call for expression of interest) o All data collected during a once-off meeting in the family home o Participants: 11 children (3 male) aged 7-17 years (M=11.5, SD=3.64)

7. The Research Questions What are the qualitative and self-reported experiences of children who have a brother or sister with a congenital heart condition? Sub-question (a): What is the impact of CHD on the self, the family unit and individuals within the family as described by children in the family without a diagnosis of CHD? Sub-question (b): what factors contribute to and challenge the adaptation of children to the presence of CHD in a brother or sister? Sub-question (c): What resources do children use to respond to challenges associated with their brother or sister’s heart condition and what recommendations do they have for others?

8. Key Findings: Overview of Main Topics Qualitative data (interviews)Knowledge of condition Hospital-related experiences and memories Impact on selfImpact on brother or sisterImpact on parents/ family Factors mentioned that may influence adaptation/ impact Coping responses and recommendations for others

9. Overall Impression Life “as normal” but punctuated by extremely stressful and disruptive illness-related events – hospitalisations, medical emergencies, surgeries.

10. Impact of the Illness o 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. o In 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” o Impact on others in the family o “…and my parents were real, kind of like...on edge…” o “…and Mum stayed in the hospital with him most nights…” o 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.

11. What may contribute to or challenge adaptation? o Illness-related factors – for example, treatment protocol, predictability, length of hospitalisation, medical paraphernalia and physical appearance. o Own understanding, information, knowledge, beliefs and cognitions about the illness. “we didn’t really know what was going on and that bothered us” o Family factors– parental support, communication, extended family support, extended separation of family unit. o Social support “…usually my friends come up and they do loads of stuff with me and make me feel better…” o External events – for example, holidays, exams, stories in the media. o Health care professionals – trust and confidence in doctors and nurses, inclusion in care.

12. Coping Behavioural Coping o Keeping busy/ active; Using food and treats; Fun activities or games; Information seeking (ask questions, do research); Praying with family members o “…structure is so important, because it keeps you going…you have to keep going” Cognitive Coping o Perspective taking; Avoidance/ denial; Comparison with others; Trust in medical staff o “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 coping o Crying; Bottling it up; Feeling helpless o “…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

13. Take-Home Messages o Children can and do adapt to the presence of CHD in their family- deficit- based or psychopathological approaches may need to be tempered. o Hospital-related experiences and memories are important o The family system has a crucial role to play and supports may be best targeted at this level. o Information and communication about the illness need careful thought- match to age, cognitive ability, emotional ability and coping style. o 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. o Identifying risk -Children lacking in essential family and social supports may be at greater risk for intense distress and perhaps difficulty coping.

14. Questions?