Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Study Participants
2.3. Data Collection
2.4. Data Analysis
2.5. Ethical Consideration
3. Results
3.1. Characteristics of Respondents
3.2. Theme 1: Self-Seeking Information
3.2.1. Subtheme: Obtaining Missing Information
“… even here in the hospital, we can see how the stroke management is done… so I learned… but I couldn’t remember it most of the time and it was always lacking… I need some more feedback… So, with this suggested mobile application, things will improve and become much easier… If I have any doubts, I can use it as a reference…”[R7, 35, wife]
“… as an example, consider an NGO like YOKUK… I believe that NGOs and hospitals can work together to help stroke patients… I mean, proactive action is being taken, primarily to involve those responsible… It might be useful… But at first, any information provided went unnoticed… we rarely have ideas for things like collaboration between two organizations… so, if there is a mobile app for this, it could be useful…”[R11, 66, husband]
“… sometimes a department’s policy is good, but when it comes to implementation, it’s simply unworkable… possibly due to issues with the information delivery mechanism at a lower level… the lack of communication between policy implementers obscures them, compromising the effectiveness of service delivery… Worse, unimproved IT and networks rendered information on existing services unavailable to the public…”[R11, 66, husband]
3.2.2. Subtheme: Internet Accessibility for Feasible Caregiving
“… previously, if I wanted to know how to care for a stroke patient, especially how to help him perform physiotherapy or any information on medications that were prescribed, I would search for it on Google… because I had no prior experience providing care to stroke patients… So, if a stroke mobile application is available, I can use it… it is pleasant for me.…”[R3, 44, wife]
“… I also learned to practice her physiotherapy by watching YouTube and searching information on Google… if a stroke mobile application is available, she can learn to practice other relevant exercises as well, particularly to strengthen her memory, in addition to routine physical exercises…”[R11, 66, husband]
“… indeed, I learn about physiotherapy practice from YouTube and Internet searches… some are similar to what has been done in this rehabilitation center, but others are not and are only performed abroad… If there is a stroke mobile app, all of the techniques can be combined to meet local needs… it makes my life easier, and I’d like to keep doing it…”[R5, 29, daughter]
3.3. Theme 2: Reasons for Using a Stroke Mobile Application in the Future
3.3.1. Subtheme: Causal Factors Prompting the Use of the Application
“… I’m 18 years old and I’m still in school… If I have time, I’ll assist her… She can read and type messages on WhatsApp on her own… aside from cooking and light household chores… If there is a stroke mobile application, I believe it would be beneficial to her…”[R9, 18, daughter]
“… I didn’t even look at the Internet, websites, or social media… I didn’t have much time because I was too busy managing him on a daily basis… As a result, the majority of the stroke-related information I learned while attending appointments here… It would be ideal if a stroke mobile application could be developed… It will assist me in managing my father’s stroke condition, especially when all the information I require is available on a single platform…”[R1, 24, daughter]
“… when he first had a stroke in 2013, he would frequently go for massage… every morning, he jogged around the house… now, perhaps because of the disease’s long-term effects, he doesn’t want to do it… If only there was a mobile app that could help him gain more motivation…”[R6, 25, son]
“… just that she’s resting more and not exercising… I really have to remind her to do anything; she needs to do regular exercise on a regular basis, just like she used to… Perhaps she is demotivated because she has been at home for a long time and feels disabled… It would be fantastic if there was a mobile application that could help to support and encourage her…”[R2, 43, husband]
3.3.2. Subtheme: Facilitating Home Physiotherapy
“… we only have balls and other simple tools to use at home… neither pedal for cycling… just me and my effort to teach her to walk, help her to hold a bed, grasp hands, and support her… do what is easy… if any mobile application can help us get cheap tools, modify the existing tool, it would be great…”[R13, 32, son]
“… sometimes, one may not know how to do home physiotherapy, how to manage a stroke patient… one never knows if they are hurt, uncomfortable, or dislike… moreover, if they were managed incorrectly, it might cause muscle and joint stiffness… what a pity for them… that’s why with a stroke mobile application, it will show the right way of performing the exercises…”[R13, 32, son]
“… sometimes we can’t remember everything we learned at the rehab center when we get home… unless we write it down and refer to pictures taken during the session… so, if we have a mobile app that uploads the procedure step by step, we can go through it again and again… If only it were possible…”[R11, 66, husband]
3.3.3. Subtheme: Welfare as a Necessity
“… I believe it would be beneficial if any link to the responsible agencies could be attached via a stroke mobile application… It would be nice, and it would make my caregiving task easier…”[R6, 25, son]
“… more importantly, we would quickly notice any type of assistance with the mobile application… sometimes, those who qualify but do not receive supplementary milk or physiotherapy tools such as a wheelchair… they may have chances to request by using this application…”[R13, 32, son]
3.4. Recommendation for the Content of Development of Stroke Mobile Application
- General knowledge and information on stroke caregiving on daily routines such as eating, bathing, walking, sitting, standing, etc.
- Knowledge and information on contextual stroke caregiving that appropriate with current COVID-19 pandemic.
- Motivational spirit to keep consistent on rehabilitation process.
- General knowledge and information to practice home physiotherapy.
- Technical skill in performing home physiotherapy in the easiest way, appropriate and correctly.
- Financial and welfare support for sustainability of stroke care.
4. Discussion
Limitations of This Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Main and Probing Questions for the Guided Interview
No. | Directions | Questions | |
---|---|---|---|
1. | Experience in seeking information | Main | How do you seek information about managing a stroke patient? |
Probing | What information do you frequently seek out, which you believe will be essential for you as a caregiver to help you with the daily task of caring for a stroke patient? | ||
2. | Reasons for using a mobile application in the future | Main | How likely are the challenges of your stroke caregiving be the key factors driving demand for a stroke mobile application? |
Probing | What challenges did you face while taking care of a stroke patient? | ||
3. | Content of a stroke mobile application | Main | From your point of view, to what extend can a stroke mobile application be of help to you as a caregiver and a stroke patient? |
Probing | What kind of cellphone do you use daily and how familiar are you with the applications in your cellphone? | ||
What is your opinion if a mobile application that may help you manage a stroke patient existed on a cellphone? | |||
From your experiences in managing a stroke patient, what information should be included in a stroke mobile application that will help you as a caregiver? | |||
How can a stroke mobile application possibly affect your daily care and management of a stroke patient? |
Appendix B. List of Initial Codes
Themes | Subthemes | Initial Codes |
---|---|---|
Self-seeking information | Obtaining missing information | Self-initiatives given the insufficient information provided by rehabilitation centers |
Insufficient information on the provision of welfare aids particularly by NGOs | ||
Inefficient information delivery mechanism with ineffective intra- and interagency communication | ||
Internet accessibility for feasible caregiving | Online information helps inexperienced stroke caregivers | |
Online information guided caregivers in managing different patients with different stroke disabilities | ||
Online information provides knowledge on caregiving according to the local context | ||
Reasons for using a stroke mobile application in the future | Causal factors prompting the use of the application | Lacking time for caregiving due to other commitments |
Too busy providing care to find the time to seek information and knowledge | ||
Inappropriate caregiving information especially during the current COVID-19 pandemic | ||
Low enthusiasm due to long duration and persistent disabilities | ||
No driving force or self-motivation to practice home physiotherapy | ||
Facilitating home physiotherapy | Help to overcome financial constraints while practicing home physiotherapy | |
Help to simplify home physiotherapy in the easiest way | ||
Provide information on appropriate and correct home physiotherapy | ||
Serve as recall references in performing home physiotherapy |
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No. | Sex | Age | Educational Level a | Employment Status b | Household Income/Month (RM) c | Relationship to the Stroke Survivor |
---|---|---|---|---|---|---|
1 | F | 24 | Intermediate | Unemployed | 2500 | Daughter |
2 | M | 43 | High | Employed | 13,000 | Husband |
3 | F | 44 | High | Employed | 11,500 | Wife |
4 | F | 37 | High | Unemployed | 6000 | Wife |
5 | F | 29 | High | Self-employed | 12,000 | Daughter |
6 | M | 25 | Intermediate | Employed | 8000 | Son |
7 | F | 35 | High | Unemployed | 8400 | Wife |
8 | M | 59 | Intermediate | Employed | 7500 | Father |
9 | F | 18 | Intermediate | Unemployed | 3000 | Daughter |
10 | F | 54 | Intermediate | Unemployed | 5500 | Wife |
11 | M | 66 | High | Retired | 8500 | Husband |
12 | F | 57 | Intermediate | Unemployed | 2800 | Wife |
13 | M | 32 | High | Unemployed | 5000 | Son |
Themes | Subthemes |
---|---|
Self-seeking information | Obtaining missing information |
Internet accessibility for feasible caregiving | |
Reasons for using a stroke mobile application in the future | Causal factors prompting the use of the application |
Facilitating home physiotherapy | |
Welfare as a necessity |
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Haji Mukhti, M.I.; Ibrahim, M.I.; Tengku Ismail, T.A.; Nadal, I.P.; Kamalakannan, S.; Kinra, S.; Abdullah, J.M.; Musa, K.I. Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study. Int. J. Environ. Res. Public Health 2022, 19, 12959. https://doi.org/10.3390/ijerph191912959
Haji Mukhti MI, Ibrahim MI, Tengku Ismail TA, Nadal IP, Kamalakannan S, Kinra S, Abdullah JM, Musa KI. Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(19):12959. https://doi.org/10.3390/ijerph191912959
Chicago/Turabian StyleHaji Mukhti, Muhammad Iqbal, Mohd Ismail Ibrahim, Tengku Alina Tengku Ismail, Iliatha Papachristou Nadal, Sureshkumar Kamalakannan, Sanjay Kinra, Jafri Malin Abdullah, and Kamarul Imran Musa. 2022. "Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study" International Journal of Environmental Research and Public Health 19, no. 19: 12959. https://doi.org/10.3390/ijerph191912959
APA StyleHaji Mukhti, M. I., Ibrahim, M. I., Tengku Ismail, T. A., Nadal, I. P., Kamalakannan, S., Kinra, S., Abdullah, J. M., & Musa, K. I. (2022). Exploring the Need for Mobile Application in Stroke Management by Informal Caregivers: A Qualitative Study. International Journal of Environmental Research and Public Health, 19(19), 12959. https://doi.org/10.3390/ijerph191912959