Many, if not most, treatment plans for children with CP are centered exclusively on the child. While a child’s interests must always be considered, the narrow focus of such plans can overlook crucial factors, like “living environment” and “family dynamic.”
In contrast, family-centered care is a philosophy – and an approach to healthcare – that fosters close, mutually beneficial relationships between patients, families, and healthcare professionals. Family-centered care integrates the needs and input of relatives into the child’s treatment plan. After all, family life is the prevailing constant in the life of any child.
Key Components of Family-Centered Care
St. Jude’s Children’s Research Hospital outlines the core concepts of family-centered patient care:
- Dignity and respect – each family’s values, backgrounds, and choices are honored;
- Information sharing – communication is open and honest between families and doctors; families are updated with timely, thorough, and accurate details about a patient’s treatment;
- Involvement – patients and families actively participate in the child’s care and the decision-making process; and
- Collaboration –patients and family members work with healthcare staff to develop and evaluate programs and policies.
Family-centered care emphasizes the needs of family members as well as those of the patient. Caretaking is a demanding job that can incur serious stress upon family members – a reality that family-centered care acknowledges.
Caretakers must consistently attend to numerous needs, like feeding a child, helping them use the bathroom, or taking them to medical appointments. Additionally, caretakers must appropriately manage a child’s “challenging behaviors.” For example, when a toddler with CP cries persistently, is the child simply having a temper tantrum – or are they expressing that they’re in pain due to muscle spasticity? Caretakers must routinely make difficult, stressful judgment calls about important issues. Researchers believe that this contributes to the heightened levels of chronic physical ailments, like stomach ulcers, among the caregiving population.
Relatives must maintain a healthy balance within their personal lives in order to effectively support a child with CP. In fact, studies show that family function is the strongest predictor of mental health in caregivers. In other words, a solid, functional support system works wonders for everyone involved! Prevention and reduction of family stress is a must.
Family Knows Best
Family-centered care also recognizes that parents or other caretakers know the patient best, and thus have the greatest insights into what a patient needs. Unlike the “take it or leave it” approach exercised by many healthcare providers, a family-centered approach actively involves family members in decisions about the child’s care.
In family-centered care scenarios, healthcare professionals solicit insights from relatives about how to better plan and deliver care. Information is exchanged openly, and a family’s preferences are respected. It’s difficult to understand why family-centered care is not a universal norm! After all, what is right for one family is not necessarily right for another. Healthcare isn’t “one size fits all,” and cannot be treated as such.
Learning More About Family-Centered Care
As a family member, caregiver, or individual with CP, it is worthwhile to request a family-centered approach to therapeutic, health, and educational services! Bring the subject up to your child’s service providers and other individuals within your healthcare community.
When seeking preliminary information about family-centered care, Dr. James Blackman of the CP International Research Foundation recommends this section of The CanChild Centre for Childhood Disability Research’s website. From there, we hope you will continue to educate yourself and pursue the option of family-centered care for your child and family. Family-centered care will improve the outcomes of your child’s treatment plan – and hopefully will inspire other families to follow suit!
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