What does my child need after a stroke? Looking to meet the needs of pediatric patients and their families

July 4, 2018

Stroke survivors have an uphill battle ahead of them. Strokes can devastate patients with disability and health problems for the rest of their lives. Most of the time, we think of stroke happening to our grandparents and older friends. But stroke can sometimes affect children too.

When it comes to a child stroke survivor, what are their needs and how can we help them in the long-term? Researchers recently questioned young stroke patients about their condition and found that many social and support needs were not being met. In an effort to understand how to improve care of these patients, we need to understand their needs better.

A question for you and your child – how can we meet your needs?

Researchers in the United Kingdom recently put together a survey to investigate the needs of children recovering from a stroke. They administered the questionnaire to both children as well as their parents or caregivers. Their hope was to help direct efforts to improve services for these children and families.

Surveys were sent to three different UK stroke centers to child stroke survivors and their families. Children qualified if they had suffered a stroke before the age of 18. The researchers also conducted an adult version of the survey on patients over 18 for comparison. The survey was comprehensive, assessing both neurological impairments as well as their health and support needs. Special care needs would fall into five categories: 1) physical health 2) everyday life 3) education and work 4) family and social support and 5) finances.

Unmet needs were high for children and their families

Of the 44 participating parents and children, more than two-thirds of the participants reported at least one unmet need in the survey. Most of the problems were associated with physical function, and unmet needs were highest in mobility, pain, and vision. More than half stated they had difficulty with school and other related activities. Over a third had trouble with hobbies and social relationships. These findings were similar to previous studies of adult stroke needs. And like adults, the more disabled the patient, the higher the needs. Most often, these had to do with health, daily living, and social relationships.

Knowledge is powerful

An interesting finding of the survey was the importance of knowledge for patients and families. A whopping 87% of respondents wanted to know more about the stroke that happened. Over half said they would want to know more about stroke in general too. Lucky for you, that’s exactly what we do here at Strokemark. We bring the knowledge to you!

More answers are in the works

Clinically, researchers reported that common questions from families had to do with the “why” and the “what now”. Many wanted to know what caused the stroke and whether it was going to happen again. People also wanted to know what the future was going to be like for the survivor. Are they going to get better? Are they going to be handicapped forever? Will my child be able to go to college? These are some examples of what these children and families are wondering.

Since stroke in children is relatively rare, the knowledge we have today is still increasing at a rapid rate. With modern science and research, hopefully, soon we can have a better idea of what the future will look like for these child stroke patients and their families.

The lead author of this study was Anne L. Gordon, the Evelina London Children’s Hospital, Guy’s & St. Thomas’ NHS Foundation Trust,  United Kingdom.

Do you also have unanswered questions about your child's stroke?

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Editorial note:

When a child suffers a stroke families are faced with a lot of questions and unmet needs. Doctors are seeking to identify those things that families need to know.

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