COMMUNITY MEMBER PARTICIPANT INFORMATION SHEET
Research Title Te Puna Rongoā: Achieving Medicines Access Equity for Māori – Pharmacists’ role
Researcher: My name is Jo Hikaka (Ngāruahine). I have almost 20 years’ experience as a pharmacist. I am also a Māori health researcher and am based in Auckland.
Full research team: Jo Hikaka (Ngāruahine), Robert Haua (Ngaiterangi), Nora Parore (Ngāti Whātua; Ngāpuhi; Ngāti Wai; Te Roroa), Kevin Pewhairangi (Ngāti Porou; Ngāti Whakaue), Mariana Hudson (Whakatōhea; Ngāti Porou), Samuel Martin (Ngāpuhi), Brendon McIntosh (Kāi Tahu), Dr Rachel Brown (Te Atiawa, Kāi Tahu), Dr Anneka Anderson (Kāti Māmoe, Kāi Tahu), Pauline Te Karu (administrator).
Kia ora, you are invited to take part in this study finding out about Māori experiences of getting medicines and health care advice from pharmacists and the pharmacy.
Do I have to take part in this study?
No, you don’t. You can choose if you want to take part in this study. If you don’t want to take part, you don’t have to give a reason. It won’t affect the care you receive. You can also change your mind, and pull out of the study at any time. You can ask questions about the study at any point throughout the study.
This Information Sheet will help you decide if you’d like to take part. We will go through this information with you and answer any questions you may have. You do not have to decide today whether or not you will take part in this study. Before you decide you may want to talk about the study with other people, such as family, whānau, friends, or healthcare providers. Feel free to do this.
If you agree to take part in this study, you will be asked to complete a Consent Form.
What is this study about?
You have been asked to take part as you are Māori, 18 years or older and have used a pharmacy to get medicines sometime in the last 3 years. We are talking to Māori community members across Aotearoa about their experience getting medicines to treat conditions such as eczema, kutu/nits, coughs and colds, scabies, and skin infections. At the moment you can get medicines to treat these on a prescription or you can buy them from your pharmacy. When you buy them from the pharmacy, they often end up costing you more. We want to learn more about how pharmacists could help Māori to get better access to healthcare for these types of conditions.
We are also asking Māori about their own and whānau experiences of taking prescription medicines, reasons that people may take them in a different way to what is prescribed and how pharmacists can support whānau to get the best out of medicines, in a way that is safe and works for whānau.
This information may help to improve how we develop pharmacist services that deliver fair outcomes for Māori. Improving the way people are able to access medicines can improve peoples’ health and wellbeing. We want to learn from your experience and ask you what you think is important when designing these services for Māori.
What will I be asked to do?
You will be asked to take part in a face-to-face group wānanga (discussion) which will take around two hours. You can choose to have support people present at the wānanga. There will be around 7 other participants in the wānanga. You can choose to speak in Te Reo. The group will be presented with some information, will be given some topics to discuss. Everyone will get a chance to contribute. The wānanga will be voice recorded. What you say will remain within the focus group. You will also be asked to complete a short questionnaire at the end of the wānanga. If COVID-19 Alert Levels means that the wānanga cannot take part in person, these will happen online instead. We will discuss if you still want to participate and what changes need to be made.
All participants will be invited to attend a hui/meeting 6-12 months after the wānanga. The researcher will present the results back to the group. You will have the opportunity to discuss or add to this. Notes of the discussions had at this hui will be collected as well as any suggestions made by those that have gathered. You do not have to attend this hui/meeting.
WHAT WILL HAPPEN TO THE INFORMATION I PROVIDE?
A transcriber employed by the study will listen the wānanga recording and type out what was said in a transcript. Transcribers will sign a confidentiality agreement. Only the transcriber and members of the research team will have access to the transcript. Information collected in this research will be used in published articles, funding reports and be presented to policymakers, healthcare providers, other researchers and communities. It will also be discussed in the follow up hui. A summary of the findings can be sent to you at the end of the study (mid-2023). Any report or publication will not identify individuals.
Voice recordings and any other data collected during this project will be password protected and stored on a secure drive at the Māori Pharmacists’ Association for ten years. After that, all data will be destroyed by deletion of electronic files and shredding of any paper copies.
POSSIBLE BENEFITS OF THIS STUDY
Each person who consents and participates will receive a koha (gift) of a $50 supermarket or petrol voucher which will be given out at the end of the wānanga. Support people will not receive extra vouchers.
The information gathered will be used to inform healthcare providers and policymakers about the needs of Māori in relation to medicines and pharmacies. It may also help to the design a medicine review service for Māori older adults. There should not be any risks to you being involved in this study.
WHO DO I CONTACT IF WANT MORE INFORMATION?
If you or your whānau would like more information, please contact the researcher or the Principal Investigator, Jo Hikaka.
WHO DO I CONTACT IF I HAVE CONCERNS?
|Researcher:||Jo Hikaka Ph: 0800 664 688 Email: firstname.lastname@example.org|
|Principal Investigator:||Jo Hikaka Ph: 0800 664 688 Email: email@example.com|
|Health and Disability Committee:||Phone:0800 4 ETHICS (384427) Email: firstname.lastname@example.org|
If you want to talk to someone who isn’t involved with the study, you can contact an independent health and disability advocate on:
Phone: 0800 555 050
If you require Māori cultural support you may wish to talk to your whānau in the first instance.
APPROVED BY THE CENTRAL HEALTH AND DISABILITIES ETHICS COMMITTEE ON 19 July 2021 Ref: 21/CEN/152.
CLICK BELOW TO GO TO THE CONSENT FORM IF YOU WOULD LIKE TO PARTICIPATE