https://doi.org/10.17037/DATA.00002245
A set of research tools used to collect information from participants, facilitators and stakeholders of 4 pilot parent support groups for children with Congenital Zika Syndrome, in Valle del Cauca, Colombia. It includes questionnaires for participants and topic guides for semi-structured interviews with participants, facilitators and stakeholders.
The questionnaires and interviews were undertaken in person by two research assistants in Valle del Cauca.
Valle del Cauca, Colombia
Data collected from August 2017 to June 2018
User guide and relevant files deposited via mediated deposit by Tracey Smythe.
Record created and published in repository by Gareth Knight. The 1st version contained four files: ‘Appendix1-Pre-and-post_questionnaires’, ‘Appendix2-Participants_topic_guide’, ‘Appendix3-Facilitators_topic_guide’, and ‘Appendix4-Key_stakeholders_topic_guide’.
Depositor submitted new version of ‘Appendix1_pre-and-post_questionnaires.xlsx’, which corrected error found in previous version. Metadata and other information remains same. Published on same day.
Depositor provided four Spanish language files for inclusion.
Filenames for files submitted on 1 June were updated – spaces replaced with underscores.
Filenames of files were amended to remove the Appendix prefix (Appendix1, Appendix2, etc.) and add the language (English). Updated filenames are:
Public record updated on 8 June 2021.
Questionnaire and Topic guides were piloted and reviewed for comprehension
Participants, facilitators and stakeholders of 4 pilot parent support groups for children with Congenital Zika Syndrome, in Valle del Cauca, Colombi
All data were de-identified.
Ethics approval for the study was granted from
Congenital zika syndrome, parent support, disability
English
The feasibility of establishing parent support groups for children with Congenital Zika Syndrome and their families: a mixed-methods study.
All phases of this study were funded by Wellcome and FCDO (Grant no. 206719/Z/17/Z).
206719/Z/17/Z
| Forename | Surname | Research group | Faculty / Dept | Institution | Role |
| Tracey | Smythe | International Centre for Evidence in Disability (ICED) | Faculty of Infectious and Tropical Diseases - Department of Clinical Research | London School of Hygiene & Tropical Medicine, London, United Kingdom | Researcher |
| Veronika | Reichenberger | International Centre for Evidence in Disability (ICED) | Faculty of Infectious and Tropical Diseases - Department of Clinical Research | London School of Hygiene & Tropical Medicine, London, United Kingdom | Researcher |
| Elisa María | Pinzón | Secretaría Departamental de Salud del Valle del Cauca, Cali, Colombia | Researcher | ||
| Isabel Cristina | Hurtado | Secretaría Departamental de Salud del Valle del Cauca, Cali, Colombia | Researcher | ||
| Luisa | Rubiano | Fundación Casa GAMI, Cali, Colombia | Researcher | ||
| Hannah | Kuper | International Centre for Evidence in Disability (ICED) | Faculty of Infectious and Tropical Diseases - Department of Clinical Research | London School of Hygiene & Tropical Medicine, London, United Kingdom | Supervisor |
| Filename | Description | Access status | Licence |
| 1-Pre-and-post_questionnaires_English |
Appendix 1: Participant pre and post questionnaire - English version. The Excel file contain the following information: Socio-demographic characteristics of the child and caregiver (baseline only), Understanding and knowledge about the child’s condition, Perceived unmet needs and main goals for the intervention by the caregiver, The PedsQL™ Family Impact Questionnaire Module, The Cantril scale for assessing subjective quality of life of caregiver and of child, implemented as a 10 point ladder, Review of goals achieved (endline only), and Satisfaction |
Open to all | Creative Commons Attribution (CC-BY) |
| 1-Pre-and-post_questionnaires_Spanish |
Appendix 1: Participant pre and post questionnaire - Spanish version. The Excel file contain the following information: Socio-demographic characteristics of the child and caregiver (baseline only), Understanding and knowledge about the child’s condition, Perceived unmet needs and main goals for the intervention by the caregiver, The PedsQL™ Family Impact Questionnaire Module, The Cantril scale for assessing subjective quality of life of caregiver and of child, implemented as a 10 point ladder, Review of goals achieved (endline only), and Satisfaction |
Open to all | Creative Commons Attribution (CC-BY) |
| 2-Participants_topic_guide_English | Topic guide focussed on satisfaction with, and perceived impact of, the group intervention (English language) | Open to all | Creative Commons Attribution (CC-BY) |
| 2a-Pre-intervention_topic_guide_Spanish | Appendix 2a: Participant interview topic guide - Pre-intervention (Spanish language) | Open to all | Creative Commons Attribution (CC-BY) |
| 2b-Endline_topic_guide_Spanish | Appendix 2b: Participant interview topic guide - Endline (Spanish language) | Open to all | Creative Commons Attribution (CC-BY) |
| 3-Facilitators_topic_guide_English | Appendix 3: A topic guide focussed on the reflections and lessons learned, perception of participants’ engagement and impact of ‘Juntos’ (English language) | Open to all | Creative Commons Attribution (CC-BY) |
| 3-Facilitators_topic_guide_Spanish | Appendix 3: A topic guide focussed on the reflections and lessons learned, perception of participants’ engagement and impact of ‘Juntos’ (Spanish language) | Open to all | Creative Commons Attribution (CC-BY) |
| 4-Key_stakeholders_topic_guide_English | Appendix 4: A topic guide focussed on practical components of implementing the sessions, reflections on lessons learned and potential future expansion (English language) | Open to all | Creative Commons Attribution (CC-BY) |
| 4-Key_stakeholders_topic_guide_Spanish | Appendix 4: A topic guide focussed on practical components of implementing the sessions, reflections on lessons learned and potential future expansion (Spanish language) | Open to all | Creative Commons Attribution (CC-BY) |