Managing Pervasive Refusal Syndrome: Strategies of Hope

Abstract

The management of pervasive refusal syndrome illustrates the practical application of hope promoting principles in clinical work. It involves a multidisciplinary team approach and a structured yet flexible management plan with a clear rationale employed over months to years. This article details the components of such a plan, including nursing management, physiotherapy, individual and family therapy. Pre-admission expectations, the necessary assessments on admission, and the establishment of management goals are also discussed. The issue of consent is elaborated, emphasizing the problematic role that refusal plays. Steps to ensure the child's survival and optimal development are outlined. Specific problem behaviours in the child and the family are described, and the need for adequate support within the treatment team to deal with these problems is considered. Attitudes that facilitate staff survival of the long haul of treating these children are described. Despite the difficulties, however, the typically favourable outcome of treatment is reported. The high cost, in terms of money and morale, means that more efficient management plans need to be developed.

Pervasive refusal syndrome – A clinical challenge

“…Anorexia nervosa was initially considered as a differential, but, refusal across several domains -food refusal, school refusal, resistance to treatment, along with social withdrawal were elicited, fulfilling diagnostic criteria for PRS (Jaspers et al, 2009). Pre admission expectations are generally high (Nunn et al, 1998) and poor cooperation from the family to continue medical care even after extensive psychosocial interventions was a limiting factor in our case.…”

“…Multidisciplinary approach with the main focus on child's survival is important. Family expectations have to be addressed and their cooperation along with nursing care is vital (Nunn et al, 1998). Music therapy which provides opportunities for choice and self control has also been tried as a method of empowerment in PRS (van der Walt and Baron, 2006).…”

Pervasive refusal syndrome: systematic review of case reports

“…There is usually a delay in the diagnosis of PRS owing to its overlap with multiple psychiatric and medical conditions [2,33]. Diagnostic uncertainty, multiple diagnoses from various professionals and family's frustration with clinicians' management may significantly contribute to the prolonged course of the condition.…”

“…Fifty-seven patients required nasogastric tube feeding followed by weaning to solids for a period that ranged between 1 and 24 months. Physiotherapy [1,2,33] and hydrotherapy [11,28,32,36] were found helpful in the patients whose symptoms included immobility. These therapies were delivered in stages progressing from passive involvement and gradually progressing to active mobilisation, at the pace dictated by the patient's degree of motivation or engagement.…”

A General Pediatrics and Integrative Medicine Approach to Pervasive Refusal Syndrome: A Case Report

“…2 A multidisciplinary, structured, inpatient psychiatric approach that provides persistent, realistic optimism and restricted parent visits has been recommended. 3,4 There is documentation of one child being treated on a general pediatric ward with full integration of parents into her care 5 and one child treated at home. 6 Complementary and alternative medicine approaches seem to have a place in child psychiatry, 7 but there are no reports detailing their use in PRS.…”