Community Consultation Highlights: Shaping the Muscle and Bone Health Survey

Shaping the Muscle and Bone Health Awareness Campaign. Listening to Families Living with Osteogenesis Imperfecta in Delta and Lagos States. At the Osteogenesis Imperfecta Foundation Nigeria, we believe that the voices of people living with Osteogenesis Imperfecta (OI) should shape the services designed to support them. To better understand the challenges faced by individuals and families, we carried out a community consultation between January and March 2025 across Delta and Lagos States. Through questionnaires, focus group discussions and one-to-one conversations, we heard directly from 58 people, including individuals living with OI, parents, carers and family members. The findings have directly informed the design of our Muscle and Bone Health Awareness Campaign, ensuring it responds to the real needs of the OI community.

Who Took Part?

Our consultation included:
• 58 participants
• 31 participants from Delta State
• 27 participants from Lagos State

Participants included:
• 36 parents and carers of children living with OI
• 15 adults living with OI
• 7 young people aged 16–25 living with OI

What We Heard:
Families Need Better Information. Many participants told us they struggle to find reliable, easy-to-understand information about Osteogenesis Imperfecta.
• 91% said finding trusted information is difficult.
• 87% had received little or no advice on fracture prevention, safe movement or day-to-day management.
• 83% were unsure where to find specialist support.

One parent told us:
“We only receive information after a fracture has happened.”

Another participant said:
“There is very little information available for families like ours.”
Families Want Practical Skills. Living with OI means making important decisions every day, yet many families told us they do not feel confident managing the condition. Only 22% felt confident supporting OI at home.

Participants asked for practical training on:
• Safe handling and movement
• Fracture prevention
• Fracture care
• Physiotherapy
• Nutrition
• Pain management

Access to Healthcare Remains a Challenge.

Families highlighted several barriers to accessing appropriate healthcare, including:
• Limited awareness of OI among healthcare professionals
• Long journeys to specialist services
• High treatment and rehabilitation costs
• Limited access to physiotherapy and mobility aids

Many families said they often rely on informal advice because specialist support is difficult to access.
Living with OI Can Feel Isolating. Beyond the physical challenges, participants described the emotional impact of living with a rare condition.
• 81% said OI had affected their mental wellbeing.
• 76% experienced anxiety about fractures.
• 69% reported feeling overwhelmed by caring responsibilities.

Many parents described feeling isolated and unsupported.
Community Exclusion Is a Reality. The consultation showed that many people living with OI experience exclusion from everyday community life.
• 86% had experienced exclusion from school, community or social activities.
• 84% had never attended an OI support group.
• 93% wanted opportunities to connect with other families living with OI.

Families shared experiences of:
• Disability stigma
• Fear of injury leading to exclusion
• Lack of understanding about OI
• Inaccessible community spaces
• Social isolation

Participants told us:
“People think my child is too fragile to take part.”
“We stay at home because we worry about safety and discrimination.”
“It feels like nobody understands what our family goes through.”
What Families Told Us They Need Most.

The highest priorities identified were:
• Practical training on fracture prevention and safe movement (95%)
• Easy-to-understand educational resources (93%)
• Opportunities to meet other families living with OI (93%)
• Practical self-management training (91%)
• Peer support groups (90%)
• Greater community awareness of OI (89%)
• Physiotherapy advice (88%)
• Safe and inclusive community activities (87%)
• Better understanding of OI within schools and communities (85%)
• Mental health support (84%)
• Nutrition advice (82%)

How We’re Responding.
Everything we heard has shaped the Muscle and Bone Health Awareness Campaign.
Over 12 months, we will:
• Support 120 individuals and families across Delta and Lagos States.
• Deliver 12 expert-led workshops covering nutrition, physiotherapy, fracture prevention, fracture care, safe movement and mental wellbeing.
• Organise 6 community events to reduce isolation and strengthen peer support.
• Develop accessible printed and digital resources created with people living with OI.
• Connect families with healthcare providers, rehabilitation services and specialist support.
• Raise awareness of OI within local communities to encourage greater understanding and inclusion.

Thank you.

We would like to thank every individual and family who shared their experiences. Your voices have shaped this project and will continue to guide our work as we strive to improve the lives of people living with Osteogenesis Imperfecta across Nigeria. Together, we are building a stronger, more informed and more connected OI community.