Perspectives of patients and families impacted by developmental dysplasia of the hip.

Abstract

Purpose: Knowledge translation (KT) ensures that the appropriate stakeholders, including patients and care providers are aware of and utilize research evidence to inform health decision-making. This is significant for those affected by developmental dysplasia of the hip (DDH), as patient experiences vary depending on the severity of their condition. To effectively improve health outcomes and quality of life for families impacted, we must first be aware of their lived experiences; therefore, we conducted focus groups with patients and caregivers of patients impacted by DDH.

Methods: Patients with DDH and their caregivers were recruited to participate in semi-structured interviews to learn about their diverse lived experiences. Thematic content analysis was performed on deidentified transcripts of the focus groups using NVIVO software.

Results: Key patient themes included anxiety and negative emotions associated with hospital/doctor visits, self-limiting activities, long-term effects of DDH, lack of agency in decision-making, and access to support services. Caregiver discussions underscored common themes including awareness level of DDH, road to diagnosis, treatment options, sufficiency of information presented, sources of support, need for more resources, and burden.

Conclusion: Focus groups provided a more comprehensive understanding of patient and caregiver experiences across the care trajectory and identified priorities for future investigation. With the knowledge gathered, we have formed a patient and family advisory group to co-develop research priorities in DDH that are relevant to patients and families.

Significance of study: This study offers deeper insight into patient and caregiver experiences, informing more responsive and patient-centered approach to DDH research and care.