Parental experiences of caring for children who have learning disabilities and procedural anxiety in hospital: An interpretive phenomenological study

BACKGROUND: Children with learning disabilities (LD) are more likely to have health conditions that require hospital attendance than children without LD. Like all children, they can experience fear and distress related to procedural anxiety. Parents play a key role in managing procedural anxiety in children with LD. No previous published qualitative studies have explored parental experiences of caring for a child with LD and procedural anxiety in hospital. OBJECTIVES: To explore how parents experienced caring for their child with LD and procedural anxiety in hospital. METHODS: A purposive sample of six participants were recruited through a Facebook group for parents of children with LD. Remote semi‐structured interviews were conducted via telephone, Microsoft Teams or Whatsapp. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis. RESULTS: Five key themes were generated: (1) Emotional toll: parents characterized their experiences as highly emotional; reporting feeling stressed, anxious and worried. (2) Restraint and holding: parents spoke of their experiences of restraint which was largely viewed as negative and sometimes inappropriate. (3) Advocacy: parents articulated their responsibility as advocates for their children. (4) Going it alone: parents were extremely proactive in managing their child's anxieties but some also felt highly‐pressurized and isolated. (5) Inconsistency and uncertainty: parents experienced inconsistency and uncertainty in their children's care from healthcare professionals which led to anxiety and frustration. CONCLUSION: Parents of children with both LD and procedural anxiety experienced many challenges. Parents' expertise must be utilized by clinicians when caring for children with LD and procedural anxiety whilst ensuring appropriate support for parents. Nurses require specific training in psychosocial interventions to enhance care for children with LD and procedural anxiety. Further research identifying effective nursing strategies to enhance parental experiences would be beneficial to improve care to this patient group.