Respite Care Study: Emma Cooke

Respite care is planned or emergency temporary care provided to caregivers of a child or adult. Emma Cooke, clarifies “Overall respite means short break. That can be anything from a few hours to a few days. Both the child and the parent can benefit from this, depending on the type of respite care.” However, respite services are often difficult to access for parents of autistic children. Emma hopes to address this difficulty in a new research project which is funded by the  HSE, which needs participation from parents nationwide.

Emma Cooke’s background is in children’s nursing. Working in Ireland’s main tertiary referral paediatric hospitals for a number of years, she observed  parents presenting to the hospital’s emergency department due to their child’s increased meltdowns and their inability to manage this. More often than not these children were admitted to hospital due to the parents’ inability to cope with the child’s meltdowns and the lack of respite care to adequately support the parents. Emma was concerned as these admissions were often at odds with the children’s needs and with what the hospital could provide “These can often be social admissions; the children are medically well but the parents are not equipped with the correct supports.” Emma notes that the children are usually autistic with extensive support needs, and their admission is the result of necessary supports being inadequate or inaccessible.

Sensory rooms, such as the one pictured here in Mullingar Hospital, are rarely equipped in hospitals, one of many reasons the environment is not appropriate for respite care

 

Emma’s study aims to explore access to respite care through the hospitals from the perspectives of parents of children on the spectrum. Key objectives of the study include identifying the reasons for presenting to the hospital, what pathways were previously tried and why they may have not worked. She stresses that these admissions are often a last resort “These parents have exhausted multiple routes like GPs and public health nurses. It’s not like they want to take their children to this overstimulating environment. But they feel like they have no other choice…They’re falling between the gaps.” In her published review of existing research a large barrier identified to accessing respite care was regional differences within countries in accessing  supports such as respite care. Emma also identified stigma and guilt associated with parents reluctance to seek out supports like respite care when struggling to cope.

The study aims to provide an understanding of the lived experience of parents’ accessing respite care through hospital for their child with additional findings such as; knowledge of pathways of access and why, requirements for developing optimal services, essential elements of a quality respite care service.

Having published some preliminary research, Emma’s team was approached by Autism Society of Norway, to translate their initial literature findings into Norwegian.  However, the project primarily needs community engagement to begin in earnest. Emma would really like to speak with parents of autistic children who have accessed respite care through hospitals and should contact emcooke@tcd.ie to lend their voices to the research.

 

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