Planning for ahead

Photo by Jo Szczepanska on Unsplash

Research goals

• Explore pain points in MS caregiving and how caregivers have adapted to the lifestyle of living with MS in tangent to the patient.
• See where the opportunity for international MS awareness exists and if there are ways information from more resourceful countries can make its way to less informed countries like Pakistan.
• Discover pain points I am not aware of. Things that I might be missing. Connections I might not be making right now.

Research plan

Objective 1: [by October 8]

• Send out messages for requesting to talk to patients, caregivers, doctors and experts.
• Create surveys and send out to caregivers and patients I already know.

Objective 2: [October 13]

• Create surveys and send to more people who I recruited.
• Secondary/desk research about existing apps and tools which exist in the market.
• One-on-one interviews with more experts.
• One-on-one interviews with organizations.

Objective 3: [October 15]

• Interviews with patients, caregivers, organizations and doctors.
• Research synthesis.
• Idea derivation from synthesis.

Some questions I am answering for myself as I dive deeper into making plans for research:

For a given area of inquiry, are you better off going to a library and reading, or going out in the physical world and observing?

I believe it has been great for me to talk to people directly related to my areas of inquiry. Every conversation has provided a different direction for thinking. They have all also shaped my original idea into different ways I could solve problem (or just different problems too). I will definitely be doing a lot more of this as I progress in my research. However, I have conducted a lot of secondary research which is going to be an ongoing element of my research as well. This is especially important to keep checking what exists in the world already and what is being worked on right now.

Do you have goal for number of people/places/books to give you enough information to inform your design process?

I need to talk to:

Patients
Doctors
Caregivers
Organizations
Support groups

If you go to the library, what specific questions can you bring so that staff there can help point you to productive reading?

I can ask them for databases which hold information regarding studies especially conducted in the last ten years. I am on the hunt right now or research conducted in minority groups with MS patients. This is in regards to how much MS awareness (including its causes, treatment and ongoing care). I have found some great studies this week about this. I am also looking for information on the different aspects of caregiving for MS patients.

If you go out into the world to observe, which specific places will you start with, and what is your backup in case you don’t see what you are hoping to?

Right now I will start from the following organizations:

National Multiple Sclerosis Society
WeCanDoMS

If you are observing or talking to people, what kind of people do you want to hear from?

Patients who are comfortable talking about their conditions. But also some who may not be comfortable but insightful on things that make them uncomfortable. I want to talk to caregivers who have been caring for their family members with MS for any amount of time. Caregivers, who will have had both kinds of experiences: successes and some challenges as they navigated MS and its impact on their lives.

How will you find them, and how will you approach them?

I have started by asking people I know through my own network. But for my next steps, I will be putting out social media posts on Facebook and Twitter. I will also be sending out some messages in Slack. I have also been reading about patients and their families on MS forums online. There is an ever-growing community of people found in support groups who I may reach out to.

Will you be alone, or with a helper?

I will be alone mostly. But I may recruit my sister who will help me in recording these conversations or making observations.

Will you interview them with a survey or a recorded conversation?

Both.

Will you take photos or make sketches?

Both.

How will you record and organize your observations, interviews, photos, etc., while you are on the go?

I will be recording via VoiceMemos, my camera, sketching notes on paper and my Macbook.