Supporting the family of patients with autism spectrum disorder

Having a child in the hospital is one of the most stressful times in any parent’s life.  The worry over a child’s health and seeing that child in pain is often a great source of fear and tension for parents.  For parents of children with autism spectrum disorder (ASD), the fear and stress are magnified by the challenges their child faces daily.  

Research has shown that the parents of individuals with ASD display greater levels of stress than other parenting groups.  Studies cite the additional challenges parents face when caring for children with ASD, causing added stress and anxiety in all aspects of their lives, which can have a detrimental effect on their own health and their ability to manage their needs and those of their families.

Nurses and caregivers are tasked with the challenge of helping patients and their families through these difficult times by providing as much support as possible.  When working with the family of an ASD patient, that support for the family becomes even more imperative, as the stress for that family is likely even greater than for a typical patient.

Acknowledging the stress parents may be feeling and offering support can ease some of the burden the parents carry, by easing some of the isolation they may feel.  Many parents are looking for someone they can share their struggles with, particularly someone in the medical field who may be able to answer some of their medical questions.

When a caregiver begins working with the patient, it is important to get as much information from parents as possible about the specific needs and challenges of the patient.  Parents are an excellent resource of information, particularly when patients are unable to provide that information for themselves.  Asking questions about challenging behaviors the patient may exhibit, and learning about potential triggers for those behaviors can help caregivers be prepared for instances such as aggression, or help to avoid these behaviors if possible.  

Parents can also provide information about the best ways to communicate with the patient, whether that is through vocal communication, sign language, pictures, or other alternative communication methods.

Answering questions is another way that nurses and caregivers can support the family of patients with autism.   Families will likely be concerned about their child’s health and may have additional concerns about the hospital’s ability to meet their child’s specific needs.  Patients with autism often have sensory challenges such as sensitivity to sounds, lights, and textures.  Caregivers can support the family and patient by helping make accommodations for these sensory needs.

Overall, showing patience and caring is one of the most important ways to support the patient and his/her family.  It can be frustrating at times to deal with additional needs and challenges of a patient with ASD, but showing caring and support can make all the difference for patients and families.

Bonis, S. (2016).Stress and Parents of Children with Autism: A Review of the Literature.
Issues Ment Health Nurs., 37(3):153-63. doi: 10.3109/01612840.2015.1116030.

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