Study Finds Services Provided by Charitable Organizations Help Support, Educate Cleft Lip/Palate Patients, Others

Alyssa KirkmanACPA News, Journal

  • Study focused on charitable organizations in England and Scotland
  • Benefits of charitable efforts were noted by patients, caregivers, clinical teams, and the charitable organizations themselves

CHAPEL HILL, N.C. / January 17, 2020 – Education and supportive services provided by charitable organizations to patients born with cleft lip and palate (CL/P) and their caregivers have been found to effectively complement clinical care, according to results of a recent study published in the January 2020 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

“Given the substantial health disparities within the US and across the globe, this study is very timely. Methods outlined in this study demonstrate a promising approach to meeting regional healthcare and patient needs”, said Jamie L. Perry, PhD, CCC-SLP, editor of The Cleft Palate-Craniofacial Journal.

“A cleft lip and palate diagnosis—and its subsequent treatment—can have a negative impact on the patient’s psychological and social functioning. Left unmanaged, patients can develop anxiety, social withdrawal, and poor self-esteem among other issues,” said Nicola Stock, lead researcher. “By providing appropriate information and support, charitable organizations can encourage healthy adjustment and coping strategies that benefit not only the patients with CL/P, but their families as well.”

The study took place over a seven-year period (2011—2018) and focused on activities of charitable organizations in England and Scotland. The data collected through mixed methods (feedback forms, focus groups, and online surveys) were evaluated against four key outcomes: 1) Volunteers receiving transferrable skills and feeling confident in supporting those affected by CL/P; 2) Children and young people born with CL/P reporting that they have more friends with whom they can discuss their CL/P with, and feeling more confident and able to cope with their CL/P; 3) Adults with CL/P having access to local support networks and feeling more confident and able to cope with CL/P; and 4) Caregivers of children with CL/P receiving access to local support networks, feeling more able to cope with their child’s diagnosis, and having more confidence in supporting their child.

Numerous benefits were reported by the authors including (but not limited to) increased communication, improved cohesion and cooperation across regions, increase in volunteering activities, overall improved satisfaction, improved support for caregivers, and increased relationship between the charitable organization and the cleft teams,” stated Perry. “Participants reported increased confidence and ability to cope with cleft lip and palate-related challenges. The key observation from this study is that this type of community-based outreach and collaboration with charitable organizations appears to have a broad impact with benefits extending to the organization, cleft palate team, community volunteers, caregivers and families, and the patient.”

In total, 924 feedback forms were collected for the evaluation: 522 from caregivers; 247 from children and young people with CL/P; 44 from adults with CL/P; and 111 from volunteers. Fourteen caregivers, 10 young people with CL/P, seven adults with CL/P; and four health professionals participated in focus groups, and 82 other stakeholders completed the online qualitative survey. Data derived from the four focus groups and the online survey were organized into four key themes: impact on volunteering activity; impact on children, young people, and adults; impact on caregivers and families; and impact on CL/P clinical teams.

“Overall, we found that charitable organizations contribute significantly to regional CL/P services, and that volunteers, patients of all ages, caregivers, and clinical teams all benefit from these efforts. In addition, the charitable organizations themselves benefit from these partnerships through ongoing service development, increased funding, and shared evidence-based practices,” Stock noted. “Going forward, we recommend the expansion of such cooperative relationships between researchers and charitable organizations to replicate these benefits on a global scale for others affected by CL/P and those who support and treat them.”

To learn more about the American Cleft Palate-Craniofacial Association and cleft and craniofacial conditions, please visit acpa-cpf.org.

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Family Services program. For more information, please visit acpa-cpf.org.