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1.
Disabil Rehabil ; 45(1): 57-64, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35019783

RESUMEN

PURPOSE: To explore the perspectives of children with CP, their parents or carers, and health professionals on factors affecting expectations and perceptions of surgical outcomes for lower limb orthopaedic surgery. MATERIALS AND METHODS: Semi-structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP, and 8 parents. Interview data were analysed by content analysis supported by the Framework Approach using the International Classification of Functioning, Disability, and Health (ICF-CY). RESULTS: A comprehensive list of 10 factors including facilitators, barriers, motivational and demotivational factors were identified and categorized into two overreaching themes (Environmental and Personal factors): interdisciplinary collaboration, communication and information resources, holistic care, and shared goal setting are reported as environment facilitators of outcomes expectations. In contrast, reported barriers include lack of time and resources and divergent expectations. Personal motivators include family encouragement, patient's self-determination, and previous experiences, whereas personal demotivators include fear of a new environment. CONCLUSION: The recognition of potential factors influencing expectations and perceptions of surgical outcomes could assist clinical reasoning when planning surgical interventions for ambulant children with CP. If these factors are integrated into the healthcare practice, it will most likely enhance the positive stakeholders' experiences postoperatively.IMPLICATION FOR REHABILITATIONUnderstanding relevant stakeholders' experiences offer a positive contribution to holistic and person-centred approaches in healthcare.People with cerebral palsy and their caregivers require adequate information on surgery and post-surgical rehabilitation regime in order to reach informed decisions.Previous experiences can influence surgical expectations and subsequent perceptions of the outcome.


Asunto(s)
Parálisis Cerebral , Procedimientos Ortopédicos , Ortopedia , Niño , Humanos , Adolescente , Parálisis Cerebral/cirugía , Parálisis Cerebral/rehabilitación , Motivación , Investigación Cualitativa , Resultado del Tratamiento , Percepción
2.
Dev Med Child Neurol ; 65(2): 254-263, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-35869637

RESUMEN

AIM: To develop a core set of outcome domains to be measured in clinical studies on lower limb orthopaedic surgery for ambulant children with cerebral palsy (CP) that represents the priorities of an international multi-stakeholder group (children, parent/carers, and health professionals). METHOD: Potential outcome domains were identified through literature review and qualitative interviews with key stakeholders. These were scored in an international two-round Delphi survey, using a 9-point Likert scale. A final consensus meeting with key stakeholders agreed on the most important outcome domains and refined the core outcome set (COS). RESULTS: One hundred and sixty-one health professionals and 36 individuals with CP and their parents/carers rated 21 of 41 outcomes as important in the Delphi survey. The final consensus group agreed 19 outcomes within eight domains to be included in the final COS: pain and fatigue, lower limb structure, motor function, mobility (daily life activities), gait-related outcomes, physical activity, independence, and quality of life. INTERPRETATION: A COS for lower limb orthopaedic surgery for children with CP was developed. Incorporating this in the design of future clinical studies will provide a more holistic assessment of the impact of treatment while allowing meaningful comparisons and future synthesis of results from primary studies. WHAT THIS PAPER ADDS: Eight core outcome domains were identified as important to measure in future clinical research. Key stakeholders perceived pain, balance and fall, and independence as very important outcomes. Six contextual factors were identified as essential in surgical decision-making.


Asunto(s)
Parálisis Cerebral , Procedimientos Ortopédicos , Niño , Humanos , Parálisis Cerebral/cirugía , Técnica Delphi , Extremidad Inferior/cirugía , Evaluación de Resultado en la Atención de Salud/métodos , Calidad de Vida , Resultado del Tratamiento
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