The Challenge

When we first met Emily, she was a 4-year-old girl living with the profound effects of a brain injury sustained at birth. Her complex medical needs required 24-hour nursing support, and the family had made the decision to home school her to ensure she received the individualised care and education she needed.

Emily’s family were incredibly loving and supportive, but understandably traumatised by the events surrounding her birth and the ongoing challenges they faced. This trauma had understandably affected their relationship with healthcare professionals, leading to a lack of trust that needed careful rebuilding. Most significantly, their protective instincts had led them to treat Emily very cautiously – like “a china doll” – with genuine fears about potentially causing her harm through movement or handling.

Emily’s physical condition was complex and deteriorating. She was experiencing frequent chest infections, which were being exacerbated by her lack of mobility and positioning issues. Her muscle tone was characteristically low (hypotonic), but this was complicated by extensor spasms that would surge through her entire body. These physical challenges were leading to serious secondary complications: bilateral hip dysplasia was developing, and she was beginning to show signs of scoliosis.

Perhaps most concerning was that Emily’s physical limitations were beginning to impact her ability to engage with the world around her, affecting both her educational potential and her quality of life.

Our Approach

Our home-based approach proved essential in this complex case, allowing us to work directly with Emily’s family and her nursing team in their familiar environment where trust could be gradually rebuilt.

Education and Empowerment: We worked intensively with Emily’s parents and nursing staff to help them understand the critical importance of movement and regular position changes. This involved careful explanation of how lack of movement was contributing to her chest infections and musculoskeletal deterioration, while demonstrating safe handling techniques that would allow Emily to move and be moved without harm.

Comprehensive Positioning Programme: We implemented a 24-hour positioning schedule, ensuring Emily’s body was optimally supported and regularly repositioned throughout the day and night. This was crucial for preventing further deterioration and managing her existing complications.

Multidisciplinary Collaboration: We worked closely alongside Emily’s broader team to ensure a coordinated approach:

• Occupational Therapist: Collaborated on wheelchair provision and seating solutions
• Speech and Language Therapist: Ensured optimal positioning to support communication aid use
• Teacher: Worked together to adapt lesson plans and ensure Emily was positioned for maximum engagement in educational activities

Optimal Positioning for Engagement: A key focus was ensuring Emily’s head position and overall posture enabled her to engage with and participate in both play and educational activities, maximising her potential for learning and development.

Staff Training: We provided comprehensive training to all team members on safe handling techniques, enabling Emily to physically participate in activities that had previously been considered too risky.

The Outcomes

The transformation in Emily’s care and quality of life was remarkable across multiple domains:

Physical Health Improvements:

• Significant reduction in frequency of chest infections
• Better management of extensor spasms through improved positioning
• Proactive management of hip dysplasia and scoliosis
• Overall improvement in respiratory function through better positioning and mobility

Enhanced Engagement and Participation:

• Optimal positioning enabled better engagement with educational activities
• Improved head control and positioning facilitated communication aid use
• Increased physical participation in play activities
• Better integration of therapeutic goals with educational objectives

Family and Team Empowerment:

• Parents gained confidence in safely handling and moving Emily
• Nursing team developed skills in therapeutic positioning and movement
• Trust in healthcare professionals was gradually rebuilt through respectful, collaborative working
• Family anxiety about Emily’s fragility was replaced with understanding of her capabilities

Educational Benefits:

• Enhanced ability to participate in home schooling activities
• Better positioning leading to improved attention and engagement
• Successful integration of therapeutic positioning with learning activities

Key Outcomes

• Dramatic reduction in chest infection frequency
• Improved family confidence in Emily’s care
• Enhanced educational engagement and participation
• Successful multidisciplinary collaboration
• Rebuilt trust between family and healthcare professionals
• 24-hour positioning programme successfully implemented
• Staff training programme delivered across nursing and family teams

The Value of Home-Based Care

This case perfectly demonstrates the unique advantages of neurological physiotherapy delivered in the home environment. By working within Emily’s familiar surroundings, we were able to rebuild trust with a traumatised family, train multiple care providers in their natural working environment, and develop solutions that worked practically within the family’s daily routines.

The home setting allowed us to see firsthand the real challenges the family faced and work collaboratively with the entire care team to develop sustainable, effective interventions that improved Emily’s health, engagement, and quality of life.

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