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Enregistrement W4405543112 · doi:10.1186/s40900-024-00665-0

Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement

2024· article· en· W4405543112 sur OpenAlexafffundabout
Sarah Thomas, Jillian Tizzard, Kelsey Puddister, Erin McGowan, Laurie Twells, Katie P. Wadden

Notice bibliographique

RevueResearch Involvement and Engagement · 2024
Typearticle
Langueen
DomaineHealth Professions
ThématiqueMental Health and Patient Involvement
Établissements canadiensMemorial University of Newfoundland
Organismes subventionnairesFaculty of Medicine, Memorial University of NewfoundlandSocial Sciences and Humanities Research Council of CanadaMemorial University of NewfoundlandWellcome Trust
Mots-clésFertilityQualitative researchInfertilityPopulationDistressEmpowermentFertility clinicPatient satisfactionMedicineFamily medicineNursingPsychologyPolitical scienceClinical psychologyPregnancySociologyEnvironmental health

Résumé

récupéré en direct d'OpenAlex

Infertility affects an estimated 8 to 12% of the global population and approximately one in six heterosexual couples in Canada. To access fertility services in Newfoundland and Labrador, Canada, individuals with an infertility diagnosis wait for extended periods, and this waiting period has been associated with psychological distress. However, this experience of waiting has not been well studied, and several gaps in fertility research exist. The inclusion of persons with lived experience of infertility in the creation of studies related to infertility may improve research outcomes and create patient empowerment. To collaboratively develop a qualitative research project focused on understanding the waiting experiences of patients seeking fertility services in Newfoundland and Labrador, utilizing patient engagement initiatives and involving individuals with infertility experiences. Three patient partners who represented individuals awaiting fertility services were recruited to be research team members. Patient partners were eligible to participate as research team members if they identified as either female or non-binary (to effectively represent the female and non-binary target population in the co-produced qualitative study) and had lived experience waiting for fertility services in the province. The research team developed a detailed patient engagement plan following the International Association for Public Participation framework (IAP2). Data from research team discussion groups were documented using a meeting minutes template. Two questionnaires from the Public and Patient Engagement Evaluation Tool were employed to assess patient partners’ impact and satisfaction with the research process. Patient partner involvement and input helped the co-creation process by refocusing the qualitative study’s research aim to empower patients. To accomplish the new research aim, the patient partners refined the study’s methodology through adjustments to the research design, protocol, interview guide, and participant criteria of the upcoming qualitative study. The PPEET analysis demonstrated high satisfaction with engagement and a high perceived value of patient contributions in the co-creation of the research study. In turn, the PPEET results indicated that patient partners had a comprehensive understanding of their roles for engagement and were satisfied with their involvement in the various research activities. In conclusion, using patient engagement to co-create a qualitative fertility study to understand patients’ experiences while waiting for fertility services resulted in significant changes to the proposed methodology and research priorities and helped address knowledge gaps in existing fertility research. Most importantly, the patient engagement approach helped foster an inclusive and empowering environment for patient partners to contribute to fertility research. A diagnosis of infertility is becoming more common across Canada and the world. As a result, more research is needed to improve the quality of care for those experiencing infertility. One way to do this is by working with individuals with lived experience of infertility to ensure the research focuses on pressing issues for that population. This study aims to enhance fertility research by involving patients as patient partners in the planning phases of a qualitative fertility study. Three patient partners of the female sex (identifying as either female or non-binary) joined a research team to co-create a qualitative fertility study that sought to understand the experience of waiting for fertility services. The co-creation process involved a series of discussion group sessions. Patient partners were asked how they felt about participating in the collaborative process using two evaluation questionnaires, and their answers showed that they felt satisfied with participating in the research. The co-creation of a qualitative research study with individuals with lived experience of infertility changed the direction of the research to be more inclusive and empowering for individuals waiting for fertility services.

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.

Comment cette classification a été obtenuedéplier

Prédiction distillée sur la base complète

Imitation des enseignants

Ni prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.

score de la tête « metaresearch » (Codex)0,051
score de la tête « metaresearch » (Gemma)0,000
Version: codex-gemma-dda1882f352aStatut de validation: machine_predicted_unvalidated
Catégories candidatesMétarecherche, Méta-épidémiologie (sens strict), Études des sciences et des technologies, Charge utile insuffisante (le modèle a refusé de juger)
Catégories consensuellesaucune
DomaineSignal candidat: aucune · Signal consensuel: aucune
Devis d'étudeSignal candidat: Qualitatif · Signal consensuel: Qualitatif
GenreSignal candidat: Empirique · Signal consensuel: Empirique
Score de désaccord entre enseignants0,051
Score d'incertitude au seuil1,000

Scores Codex et Gemma par catégorie

CatégorieCodexGemma
Métarecherche0,0510,000
Méta-épidémiologie (sens strict)0,0000,000
Méta-épidémiologie (sens large)0,0000,000
Bibliométrie0,0010,001
Études des sciences et des technologies0,0040,000
Communication savante0,0000,000
Science ouverte0,0000,001
Intégrité de la recherche0,0000,002
Charge utile insuffisante (le modèle a refusé de juger)0,0020,000

Scores machine (provisoires)

Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.

Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.

Tête enseignante Opus0,781
Tête enseignante GPT0,653
Écart entre enseignants0,128 · la distance entre les deux têtes enseignantes sur ce seul travail
Statut de validationscore_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle

Classification

machine, non validée

Prédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.

Devis d'étudeQualitatif
Domainenon disponible
GenreEmpirique

Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».

En bref

Citations5
Publié2024
Routes d'admission3
Résumé présentoui

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