Educating parents and caregivers about the need for hip surveillance for children with cerebral palsy, and helping reduce barriers in getting the needed X-rays, are key to establishing family-centered services to improve adherence to physician recommendations, an Australian study found.
The researchers found that gaps in knowledge, poor communication and coordination with healthcare providers, and the challenges of getting X-rays done are the main factors in what clinicians report as a lack of hip surveillance.
The study, “More than an X-ray: Experiences and perspectives of parents of children with cerebral palsy when engaging in hip surveillance,” was published in the Journal of Paediatrics and Child Health.
Hip problems are common in children with cerebral palsy, with up to a third of them needing hip surgery. Clinicians say that earlier detection of hip dysplasia — when the hip joint doesn’t fit quite right — can lead to better outcomes. Earlier interventions may allow physicians to prevent further damage, rather than simply trying to “salvage” what’s there.
Those factors make hip surveillance a necessity, the researchers said.
Early detection requires more than just what can be done in a hospital visit. Ideally, the researchers said, it includes some level of participation on the part of the child’s caregivers. The benefits of a family-centered model are largely self-evident, but not much is known about the barriers to hip surveillance among caregivers of children with cerebral palsy.
To address this knowledge gap, researchers held focus groups that included a total 23 caregivers of children with cerebral palsy. The children were between 2 and 19 years old. The caregivers mostly resided in urban centers in Australia, and they were generally “average” or “advantaged” in terms of socioeconomic status. Most (21) of the participants were children’s mothers; there was also one father and one grandmother.
Using a series of questions to guide the discussion, the researchers analyzed caregiver responses to look for overarching patterns.
Many of the caregivers noted that hip surveillance is a responsibility that is shared, not just by family members and healthcare providers, but among different healthcare providers, including pediatricians and therapists. Although shared responsibility for surveillance was reported to work best, this also led to some confusion for the caregivers as to who is “in charge” of such surveillance, and to whom concerns should be first addressed.
Caregivers reported valuing healthcare providers who are both supportive and consistent. “Continuity of care has made a big difference so in situations where we’ve been able to have the same health professional looking after us over an extended time period I think that’s made an enormous positive difference … In some health services we see different people frequently and that has a negative impact,” one parent is quoted in the study as saying.
Good communication with healthcare providers also is critical, and knowledge is empowering, the caregivers told researchers.
“Communicating together … [is] very helpful,” said one caregiver. “When everybody’s [copied in] that’s very helpful because then everybody’s receiving the same information and so they’re all up to date.”
“[Providing information] gives [parents] a sense of control in an area that is really uncontrollable,” added another caregiver.
Hip surveillance generally requires X-rays, and caregivers generally agreed that booking X-rays right before medical appointments was optimal. However, caregivers reported challenges in getting X-rays done that aren’t generally recognized by health care providers.
“It’s the practical issue of getting [your] child onto the table and holding them,” said one parent. “I have to get my husband to take the morning off work to come and help me.”
“It just seems like it’s a simple thing to just go on and get an X-ray, but for us it’s something that we dread having to do,” added another.
The researchers said helping caregivers overcome the barriers to getting the needed X-rays would help in improving adherence to healthcare providers’ recommendations.
“Providing necessary information in radiology referrals, such as requiring a hoist for transfers for a non-ambulant child, may improve the X-ray experience for many children and parents,” the researchers said.
Overall, this study paints a clearer understanding of the challenges faced by parents of children with cerebral palsy in conducting hip surveillance.
“Awareness of family experiences and the barriers encountered when engaging in hip surveillance may guide clinicians or health services in other areas to establish family-centred hip surveillance services that are well accepted by both families and health professionals,” the researchers concluded.