Background: Hereditary Angioedema (HAE) due to C1-inhibitor deficiency (C1INH) is a rare condition, clinically characterised by recurrent swelling. The unpredictability of attacks affects the patients' quality of life (QoL). HAE patients and their families have vast unmet physical, psychological, and social needs. A human-centred design (HCD) approach to describing the needs of different user types is to utilise personas, a data-driven narrative tool for communicating user archetypes that capture the individuals' attitudes, goals, and behaviours. The aim of this study was to create and analyse personas based on HAE patients' and their caregivers' interviews. Semi-structured interviews were conducted through anthropological conversations with patients, patient-caregivers (double role of patient and caregiver), and non-affected caregivers. Qualitative and quantitative insights from analyses formed the basis to create personas.
Results: We enrolled 17 subjects: 15 patients (6 of them were patient-caregivers) and 2 non-affected caregivers. The mean age of participants was 50.3 ± 14.4 years. Eight patients were on treatment with prophylactic therapy. The mean percentage score of Angioedema Quality of Life (AE-QoL) for HAE patients was 19.8 ± 12.0. Six personas were identified describing the participants' personal history, disease management, and needs: four personas referred to patients, one to patient-caregivers, and one non-affected caregiver personas were identified. Across patient personas, the most expressed needs were psychological support and better awareness amongst healthcare professionals. Caregivers, on their side, desired better information about the disease, including the latest therapies, and higher awareness within the community.
Conclusion: A Human Centred Innovative Approach Based on Persona extends beyond the physical symptoms to encompass the psychological and social aspects of the individual's well-being also including the family in the evaluation.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11316298 | PMC |
| http://dx.doi.org/10.1186/s13023-024-03302-x | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Experiences and barriers in downward referral decision-making for palliative care patient caregivers under China's three-tiered linkage model: A qualitative study.
Asia Pac J Oncol Nurs
December 2025
Department of Oncology, Nanjing Drum Tower Hospital, Affiliated Hospital of Medical School, Nanjing University, Nanjing, China.
Objective: This study aimed to explore hospice caregivers' downward referral decision-making experiences and barriers under the triadic linkage model in China and to analyze the deeper social dynamics of hospice referral choices.
Methods: Semi-structured interviews were conducted with caregivers handling hospice referrals from two primary hospice agencies in Nanjing, China. The themes were analyzed and summarized using the Colaizzi 7-step analysis.
Heavy menstrual bleeding clinics for adolescents.
Hematology Am Soc Hematol Educ Program
December 2024
Stead Family Department of Pediatrics, Carver College of Medicine, University of Iowa, Iowa City, IA.
Heavy menstrual bleeding (HMB) is a common symptom in adolescence, often leading to significant disruptions in daily life, such as school absences, shame caused by the stigma surrounding menstruation, and symptoms from iron deficiency. Further, HMB may be the first and/or only sign of an underlying bleeding disorder. Navigating the symptoms, effects, and treatments of HMB during adolescence requires a collaborative approach between the patient, caregivers, and healthcare providers.
View Article and Find Full Text PDFAssessment of In-Office Tympanostomy Tube Insertion Tolerability in Children Under 2 Years.
Ear Nose Throat J
November 2024
Otolaryngology Head and Neck Surgery, St. Cloud ENT, St. Cloud, MN, USA.
In-office tympanostomy tube insertion (TTI) is becoming more available in the practice of pediatric otolaryngology. This study evaluated the tolerability of this procedure in young children. Four methods were used to assess tolerability.
View Article and Find Full Text PDFPurpose: The prevalence of autism spectrum disorder (ASD) is currently estimated to be 1 in 36 children. While much is known about the impact of ASD on family and community functioning as well as treatment outcomes, less is known about a relatively new categorization of ASD, called "profound autism."
Methods: The current study evaluated 14 consecutively admitted patients meeting criteria for profound autism to a specialized psychiatric inpatient and partial hospitalization program.
The Burden and Coping Mechanisms among the Caregivers of Immobilized Elderly Patients: A Multinational Comparative Study.
Iran J Nurs Midwifery Res
September 2024
Community Health Nursing Department, Faculty of Nursing, Damanhour University, Damanhour, Egypt.
Background: Caregivers face various difficulties that put a huge burden on them, especially when dealing with immobilized elderly patients. This study aimed to compare caregivers' burdens and coping mechanisms during the care of immobilized elderly patients.
Materials And Methods: The descriptive comparative design was adopted for this study in Najran City, Saudi Arabia, and Damanhour City, Egypt, in 2022.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!