Healthcare professionals should develop new strategies for helping to fulfill the now unmet needs of parents whose children have severe cerebral palsy, beginning with improving education about the disease and aiding them in getting financial, emotional, and social support, a study suggests.
The findings of the study, “The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy,” were published in the International Journal of Environmental Research and Public Health.
Caring for children with cerebral palsy (CP) is often challenging to parents, and is associated with significant psychosocial distress that poses a large burden to their quality of life.
The family needs of children with CP vary greatly, depending on the level of physical disability each patient has. In general, children with severe motor impairments — those that fall into level IV and V of the Gross Motor Function Classification System (GMFCS) — require additional health care resources and more expensive medications than those with lower GMFCS levels.
“Previous studies which assessed the needs of family of children with CP or disability have reported several main needs which include the need for information about the condition of their children, treatment options, presently available services and the services they may receive in the future,” the researchers said.
However, so far there have been few studies that addressed the specific needs of parents caring for highly dependent children with severe motor impairments associated with CP.
To learn more, researchers from the Universiti Kebangsaan in Malaysia carried out face-to-face interviews with nine parents of children with CP to assess some of their unmet needs.
All children had moderate-to-severe motor impairments and required assistance to move (GMFCS level III, IV or V). The interviews were tape recorded and transcribed afterward. The transcribed interview data was then evaluated using a thematic analysis method to pinpoint specific needs parents felt were not being met.
Most of the parents said they were “deprived of information related to their child’s condition,” especially immediately or soon after receiving the diagnosis.
“Their main source of information was from the internet, although they wished the healthcare providers had provided comprehensive information during their visit to the hospital or healthcare centers,” the researchers said.
Some parents mentioned that the support they received from the government’s social welfare department could be improved beyond the current provision of daily consumables and disposables. Many noted problems in acquiring the necessary equipment for caring for their child’s special needs, and said they were lacking financial assistance.
“None of her rehab equipment is cheap,” one parent was reported as saying.
“Daily expenses is still ok … the thing that he needs really … for example like the AFO or his chair … his equipment … those are expensive,” another parent said.
One parent interviewed reported submitting a request for help two years prior and never receiving a response.
“Not given (any help) at all. Any help … or anything … nothing,” another parent said. “Exactly … where do we get (sponsorship for) special equipment? Nothing, couldn’t and didn’t buy anything.”
Others said they were lacking emotional and spiritual support to deal with their child’s condition.
One mentioned that it takes time to accept a child’s severe disability so “counselling should be available. Not just for me but my child.”
Some admitted they sometimes struggled to explain their child’s condition to others, especially strangers, and to involve their children in outdoor activities due to limitations posed by CP. Parents said they felt they needed to ensure the environment was safe and the facilities were disabled-friendly.
One parent said that she stopped traveling, except for back to her hometown.
“Difficult to bring her … to carry … bathing in the public toilet with her in kneeling position … and the toilet which we are not sure about its cleanliness … Actually, I have stopped all travel plans for now because we know that we will … if we went on a vacation, we will not be happy. So I stopped (travel plan), I avoid vacations,” the parent was quoted as saying. “I only go back to our hometown.”
Parents reported finding assistance in speaking with other parents. But none reported having access to any support groups or programs.
“The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimized in addressing this area of concern,” the researchers said.
“Further study is needed to strengthen the study’s findings and should include participants who do not receive any rehabilitation and day care service, including those living in rural areas,” they concluded.