Coordinators Are Key to Successful Family-centered Care for Kids with Type 1 SMA

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

Share this article:

Share article via email
multidisciplinary team, Spinraza

Establishing care coordinators is key to providing successful family-centered care to young spinal muscular atrophy (SMA) type 1 patients and their families, according to a recent study.

The study, “Identifying Opportunities to Provide Family-centered Care for Families With Children With Type 1 Spinal Muscular Atrophy,” was published in the Journal of Pediatric Nursing.

Family-centered care (FCC), mainly employed in pediatric care, is defined as “an approach to the planning, delivery, and evaluation of health care that is governed by mutually beneficial partnerships between health care providers, patients, and families.”

FCC has been associated with several benefits, including greater satisfaction with care, lower number of hospitalizations, improved psychological health, greater adherence to treatment, and easier access to health care systems.

While it is considered the standard of pediatric health care by many hospitals, clinical practices, health care groups, pediatricians, and nurses, its implementation into clinical practice remains insufficient.

Considering the complex medical decisions that families with children with SMA type 1 — the most severe form of SMA — must make regarding treatment, palliative care, and symptom management, this type of approach could be of great benefit.

A recent study has shown that taking care of a child with SMA significantly affects families’ lives, including finances, career choices, social life, and mental health. The establishment of collaborations between family members and health care providers could also reduce families’ stress and improve their mental health.

While FCC has been used and described in the context of other childhood conditions, little is known about its application among children with type 1 SMA.

In this study, supported by Cure SMA, researchers evaluated successful applications of FCC and where FCC can be improved among families of children with type 1 SMA.

The team interviewed 19 English- or Spanish-speaking families with one or more children with type 1 SMA who had received medical treatment in two southern U.S. states to understand their experiences in the emergency center, hospital, or with their primary care provider.

The mean age of the 29 parents (18 women and 11 men) interviewed was 27, ranging from 24 to 54 years old. Among the 22 children with type 1 SMA of these 19 families, 11 were alive.

Participants’ responses were grouped under the eight principles of FCC: acknowledging that the family is the constant in a child’s life; accepting different methods of coping; recognizing and respecting different cultures and beliefs; appreciating families as families and children as children; exchanging information between families and professionals in a supportive manner; facilitating family-professional collaboration at all levels; facilitating family-to-family support; and ensuring that services are flexible, accessible, and responsive to diverse family-identified needs.

The results showed that the most common successful application of FCC was in the interaction between families, while the family-provider communication still needed improvement.

The non-application of the FCC principles was associated with higher levels of stress in these families, highlighting the value of this type of care.

Families reported the desire to have a care coordinator to “serve as a shared communicator between the family and health system, to represent the families’ sensitivities, values and concerns to the medical team and vice versa,” researchers said.

A care coordinator can help the family understand the information given, increase its knowledge about the disease, treatment, palliative care, etc., and promote a beneficial relationship between the family and the medical team.

“The distress and ethical considerations that families of children with Type 1 SMA face demonstrate this population’s specific need for thorough disease-related education to include the long-range prognosis and for supportive dialogue with providers as treatment options are explored,” researchers said.

The team concluded that the application of FCC may guide delicate discussions regarding the burden of care and the child’s quality of life associated with treatments; that nursing professionals may work as care coordinators; and that families should be given educational tools to help them better understand the disease course and treatment options, as well as the opportunity to contact other families of children with Type 1 SMA.

Also, researchers think that providing more information about FCC to medical students and health providers may lead to a cultural change and acknowledge the importance of a care coordinator for families whose children have type 1 SMA.