Research Methods
Key research questions, details of the data collection process, and more information about the MIT AgeLab are presented.
Daily Surveys
For the first month of the study, all 30 participating caregivers were asked to fill out a questionnaire everyday. At the end of each day, caregivers received an email prompting them to fill out the online questionnaire.
The daily questionnaire enabled caregivers to report details of various caregiving tasks they have done each day. Questions were asked about the following:
- Task categories (e.g. helping with medications, assisting with transportation, managing financial matters, helping with eating or feeding, assisting with bathing or showering, etc.)
- Frequency of each task, and time of day (including night time) when each task was carried out
- Duration of time spent on each caregiving task
- Level of preparedness and difficulty, and degree of strain (physical, financial and emotional)
- Details of any services or resources used for each task, and if anyone else shared the caregivers' responsibilities
- Effects of caregiving on their work and family life, if any
While many questions were multiple-choice, the survey also included open spaces for caregivers to freely describe their experiences using their own words. The survey also allowed caregivers to upload image files related with their caregiving experiences. On average, each participating caregiver spent about 40 minutes daily completing the questionnaire.
Weekly Surveys
The first month of daily reporting was followed by two months, or eight weeks, of weekly surveys. At the same time each week, caregivers received an email with a link to the online questionnaire for the week.
The eight weekly surveys were designed to ask in-depth questions about various aspects of caregiving. Topics for the eight weekly surveys were:
- Week 1
Transportation
Caregivers' and care recipient's use of various transportation alternatives. How caregivers assist their care recipients with getting around outside of the house, as well as transferring within the house.
- Week 2
Caregiver well-being
How caregivers manage their own well-being and personal time. What they do to reduce stress and receive support, if any.
- Week 3
Technology
Use of various technologies and tools for caregiving. How caregivers assist their care recipients with using technology. Descriptions of any personalized solutions, or "hacks".
- Week 4
Social networks and communication
How caregivers and care recipients interact with other people, and what they use for social interactions. How care recipients help their care recipients with social activities.
- Week 5
Information seeking
How caregivers are getting information they need with regards to caregiving. What they use to find information and other support services.
- Week 6
Time management
How caregivers manage their time, organize tasks, and prioritize jobs to be done.
- Week 7
Medication management
How caregivers help their care recipients with ordering, managing and taking medications, as well as how they manage their own medications.
- Week 8
Finances
Descriptions of financial arrangements related to caregiving. How caregivers help care recipients with paying bills, managing finances and making financial decisions.
Some general questions about medication adherence and overall mood were repeated every week. In all eight weekly surveys, spaces were provided for the caregivers to write about their experiences, describe their ideas, and post related images.
Phone Interviews
Each caregiver participated in a total of four one-on-one phone interview sessions with a researcher.
- Interview 1
The first phone interview was conducted prior to the first day of study, before caregivers were given any daily surveys. This interview was to introduce the caregivers to the study, describe the overall procedure, and to gather detailed information about their caregiving situation. This interview lasted about an hour.
- Interview 2
The second phone interview was conducted after two weeks of daily surveys. During this short interview, caregivers had an opportunity to report any technical issues, and to talk about any caregiving experiences not were either not captured by the online questionnaire or better described in person.
- Interview 3
After one month of daily surveys, another brief phone interview was conducted to introduce caregivers to the weekly surveys, and to gather comments and feedback.
- Interview 4
An exit interview was conducted at the end of the three-month data collection. During this interviews, caregivers talked about their study experiences, effect of participation on caregiving, any caregiving experiences they wanted to describe in addition to what was captured by the surveys, and suggestions for other caregivers. This interview lasted about 30 minutes.