Child Protective Services Referral in a Cleft Lip and/or Palate Population: Assessment of Prevalence, Indications, and Outcomes.

OBJECTIVE: To determine the prevalence of, reasons for, and outcomes related to Child Protective Services (CPS) referral in an isolated and syndromic cleft lip/palate population. DESIGN: Retrospective cohort study. SETTING: Tertiary Children's Hospital. PATIENTS: Any patient <18 years of age attending the multidisciplinary cleft team for care at our institution with a history of referral to CPS by the cleft team during the study period 2009 to 2014. MAIN OUTCOME MEASURES: The number of children with CPS referrals, reasons for CPS referrals, outcomes of CPS referrals, associated psychosocial risk factors potentially predictive of CPS referral; demographics and cleft-related surgical history was also reviewed for each patient. RESULTS: Of 1392 patients, 25 (1.8%) were identified with a history of referral to CPS. Average age at referral was 11 months; 76.0% of patients were <1 year of age. Most referrals (64.0%) were directly associated with issues related to cleft care. Identified psychosocial risk factors included financial strain, mental illness/cognitive disability, transportation issues, and inadequate social support. Nine families ultimately lost custody of their children temporarily (n = 5) or permanently (n = 4). CONCLUSIONS: Cleft team family referral to CPS involves long-term patient care challenges requiring maximal medical and social support. Families are most commonly referred for issues related to medical neglect, which can lead to failure to thrive, delays in care, and ultimate removal from the home. Identifying families with known psychosocial risk factors and providing increased support may potentially help avoid referrals to CPS.

Assessment and Management of Psychosocial Needs: Social Work Utilization in Comprehensive Cleft Team Care.

OBJECTIVE: To determine family-reported psychosocial stressors and social worker assessments and interventions within a comprehensive cleft team. DESIGN: Single-institution prospective provider-completed survey. PATIENTS: Four hundred one families seen by cleft team social worker over a 7-month period. RESULTS: Most families (n = 331; 83%) participated in the team social work assessment. At least 1 active psychosocial stressor was reported by 238 (72%) families, with 63 (19%) families reported 3 or more stressors. There were 34 types of stressors reported. Most common were financial strain, young age of patient, new cleft diagnosis, and distance from clinic (57% of families live over an hour away). Family structure and home environment were assessed in detail for 288 (87%) families. Detailed assessments for access to care and behavioral/developmental issues also figured prominently. Social work interventions were provided in 264 (80%) of the visits, of which 91 were for families of new patients with over half who had infants less than 3 months old. Of the 643 interventions provided, the most frequent were parent mental health screens and counseling, early intervention referrals, transportation assistance, securing local hotel discounts, orthodontic referrals, and orthodontic cost coverage. Approximately 10% of encounters required follow-up contact related to the psychosocial concerns identified in clinic. CONCLUSIONS: The inclusion of a cleft team social worker is a critical component of comprehensive cleft team care as evidenced by the large proportion of families who required assistance. Ongoing social work assessments are recommended for each patient to help address the variety of psychosocial stressors families face.

The cleft team social worker.

The birth of a child with significant medical problems poses challenges for most families. Congenital orofacial clefting is a common condition affecting families worldwide. Orofacial clefting requires long-term medical care and can affect multiple body systems. Having a child with a chronic medical condition such as cleft lip or palate creates many psychosocial ramifications for a family. This article describes the importance of medical social work involvement in the coordinated care for children with cleft lip and palate. Specific cases spanning prenatal care through adolescence are used to highlight the variety of complex psychosocial situations encountered in the multidisciplinary cleft team setting.

Including the perspective of the adolescent in palliative care preferences.

Improving communication with an adolescent with a life-limiting or life-threatening disease is key to providing comprehensive care and support. A pediatric hospital in the Midwest uses a communication tool (CCCT) to facilitate conversations about the adolescent's wishes, beliefs, values, preferences and goals. Information gathered in a CCCT conversation becomes a key intervention to providing compassionate, appropriate care that is directed toward quality of life consistent with the adolescent's and family's goals.