Abstract
Evidence suggests that medical services do not reflect the increased involvement of fathers in childcare, a discrepancy that can often lead to feelings of exclusion and inequality. Fathers who have a child with Down syndrome may encounter many different health professionals during their child’s life, therefore it is important to consider this relationship, and investigate the factors that influence their experiences. This is particularly important because the limited research focusing on fathers suggest that those who have a child with Down syndrome can experience increased stress levels and lasting feelings of loss and grief. It is therefore important to address their relationships with health professionals, as these may be a significant resource to prevent these feelings. This study used interpretative phenomenological analysis (IPA) to explore the experiences of seven fathers who have a child with Down syndrome, focusing on their interactions with health professionals. The analysis showed that the major factors associated with negative experiences were feelings of exclusion, receiving overly negative information about the condition and a perceived lack of on-going support. Positive experiences were associated with being made to feel like an equal parent, being given direct/clear information and being congratulated on the birth of their child. These results provide an insight into what fathers expect in terms of their own and their child’s care and highlight that health professionals have an important and extensive role in influencing fathers’ experiences of Down syndrome.
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Acknowledgements
The authors wish to thank all of the participants and their families for their involvement. This work was conducted to fulfill an MSc. degree requirement.
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Freyja Docherty and Rebecca Dimond declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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This article does not contain any studies with animals performed by any of the authors.
Appendix: Interview guide
Appendix: Interview guide
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Can you tell me a bit about you and your family?
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Can you tell me about your experience of receiving a diagnosis of Down syndrome in your child?
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How do you feel you were treated by healthcare professionals when you received that diagnosis?
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Is there anything that sticks out in your mind that either a doctor, nurse or other care worker did that you found particularly helpful at the time of getting this diagnosis?
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Is there anything that stands out as particularly stressful?
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What advice would you like to give to health professional about talking to fathers about diagnosis?
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Thinking about your experiences now, what can you tell me about being a father to a child with Down syndrome?
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Do you feel you are treated differently by friends and family or wider society because your child has this diagnosis?
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Do you feel you have the support you need?
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Recently what have been your experiences of health professionals regarding your child?
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Is there a particular occasion where you felt you were treated poorly by health professionals?
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A particular occasion when you felt you were treated very well?
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How do you think your experiences with health professionals compares to that of your partner/wife/ your child’s mother?
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What advice would you give to other dads who have a child with Down syndrome?
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What advice would you give to health professional or care workers who come into contact with dads who care for a child with Down syndrome?
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Docherty, F., Dimond, R. “Yeah that Made a Big Difference!”: The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome. J Genet Counsel 27, 665–674 (2018). https://doi.org/10.1007/s10897-017-0171-y
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DOI: https://doi.org/10.1007/s10897-017-0171-y