E-ISSN 1858-8360 | ISSN 0256-4408
 

Original Article 


SUDANESE JOURNAL OF PAEDIATRICS

2021; Vol 21, Issue No. 1

ORIGINAL ARTICLE

Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan

Inaam N. Mohamed (1,2), Maha A. Elseed (1)

(1) Department of Paediatrics and Child Health, Faculty of Medicine, University of Khartoum, Sudan

(2) Neurology Unit, Gaafar Ibnauf Specialized Children’s Hospital, Khartoum, Sudan

Correspondence to:

Inaam N. Mohammed

Neurology Division, Department of Pediatrics and Child Health, Faculty of Medicine, University of Khartoum, Sudan

Email: inaamgashey [at] gmail.com, Inaam.gashey [at] uofk.edu

Received: 08 August 2020 | Accepted: 08 October 2020

How to cite this article:

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudan J Paediatr. 2021;21(1): 48–52.

https://doi.org//10.24911/SJP.106-1596913564


ABSTRACT

The authors used smart phones and its WhatsApp application, as a means of communication among the team members and caregivers for children with neurodisabilities, for patient consultations and medical information sharing as they are faced by an increasing number of patients coming from all over Sudan. The group included 256 mothers (caregivers) of children with neurodisabilities. The caregivers (mostly mothers) were asked to fill in a simple survey to get a feedback regarding the service offered in the WhatsApp group after taking their permission. The main aim of this study is to determine the usefulness of WhatsApp application as a means of communication between neurology team members and caregivers for children with neurodisabilities. Two hundred and forty-two caregivers responded (94.5%). All caregivers think that there is a great benefit from the group in locating the whereabouts of some unattainable/out of stock drugs. Two hundred and forty (99.1%) caregivers think that questions posed in the group are promptly and timely answered; the consultation offered is beneficial and minimises the need to go to hospital or seek a doctor’s appointment. In addition, they think that they benefit from the new acquaintance and communication with mothers whose children suffer from similar conditions, which positively impacted their spirits and had a favourable effect psychologically. Using WhatsApp can solve the problems of shortage in neurology service in remote areas in resource limited countries.


KEYWORDS

WhatsApp utility; Neurodisabilities; Management; Child; Sudan.


INTRODUCTION

Sudan has a population of 43 million (2018 estimate) [1] and occupies 1,886,068 square kilometres, making it Africa’s third-largest country and also the third-largest of the Arab states. The population is scattered all over the country and transportation infrastructure largely subsists around Khartoum State and big cities. The rest of Sudan consists of disjointed highways with high cost of travelling from other States to Khartoum State (the capital) where most of the health services are concentrated. Since 1997 Sudan is going fast in the development of internet infrastructures. Currently, the internet broadband speed is relatively easy, faster and very widespread in the country via the range of technologies in various forms such as Digital subscriber line (DSL) internet (dsl speed), dial-up connections, Asymmetric Digital Subscriber Line (ADSL) internet (adsl speed), ISDN (Integrated Services Digital Network), ADSL broadband speed etc. There were 13.38 million internet users in Sudan in January 2020. The number of mobile connections in Sudan in January 2020 was equivalent to 76% of the total population [2].

The rise of mobile apps is an important development in health and healthcare, particularly social apps that provide learning and collaboration opportunities to busy health professionals [3,4]. WhatsApp is a free and easy-to-use app that facilitates all sorts of clinical and non-clinical exchanges. The service has recently implemented (end-to-end encryption) to protect user privacy [5], making it even better suited to clinical applications. WhatsApp is an early stage technology start up founded to build a better short message service alternative. It is a proprietary cross platform instant messaging application for smart phones. Santa Clara, California-based company WhatsApp Inc. was founded in 2009 by Brian Acton and Jan Koum developed it [6].

Some of our patients, especially those in States other than Khartoum, frequently get shortage of medications either due to unavailability or unaffordability and other medical concerns that need urgent help. That is why we thought of using WhatsApp to communicate with caregivers of children with neurodisabilties. The main aim of this study is to determine the usefulness of WhatsApp application as a means of communication between neurology team members and caregivers for children with neurodisabilities in our setup.


MATERIALS AND METHODS

From September 2017 to August 2020, the authors used smart phones and its WhatsApp application as a means of communication among the team members and caregivers for children with neurodisabilities for patient consultations and medical information sharing. The group included 256 caregivers of children with neurodisabilities. The caregivers were oriented on the group objectives, background rules, scope and style of questions, uploading videos, photos, investigation results and confidentiality of the data in the group.

The caregivers (mostly mothers) were asked to fill in a simple survey to get a feedback regarding the service offered. The questionnaire addressed the perception of caregivers regarding the main service provided through the WhatsApp group. The questionnaire was sent through WhatsApp group and few filled in through Google forms. For those who found it difficult to complete the questionnaire, they sent their answered as audio recording to the First Author (INM) private WhatsApp.

Setup

The Authors are running a paediatric neurology outpatient clinic devoted to children with epilepsy and neurodisabilities at Fath Elrahman El-Basher Center (Gaafar Ibnauf Specialised Children’s Hospital Outpatient Departments) in Khartoum, the capital city of Sudan. We are faced by an increasing number of patients coming from all over Sudan. In one study, we analysed 6,019 patients from this clinic and the biggest group was childhood epilepsies which accounted for 2,877 (47.8%) patients, followed by children with cerebral palsy which accounted for 1149 (19.1%) [7]. A considerable number of patients are referred from outside Khartoum, especially those with cerebral palsy and other neurodisabilities. We are convinced that this is the tip of the iceberg, as those who really need to be referred are unable to attend in view of financial issues and other social commitments. Hence, other methods of care are needed if the management is to be improved.

The cerebral palsy clinic group

The Authors joined a WhatsApp group initiated by a local charity organisation aiming at communication, health education and consultations that could solve some of the children problems that do not need direct doctor involvement. The ‘cerebral palsy clinic’ group includes subspecialty doctors, allied health professionals, such as physiotherapists, speech and language therapists, dentists, psychologists, paediatric surgeons, dieticians, and orthopaedic specialists. The questions are numbered, for example, if you are asking the physiotherapist, the number code is 3 to ease tracking of questions. The professionals respond to the queries, in simple native language avoiding medical jargon as much as possible. They can ask questions to the relevant team members, send voice messages, upload videos, send results of investigations as documents, can upload brain images and give brief history of the patient and the team respond immediately and discuss the management of the patient with other team members. The background rule of the group is that the non- medical messages are completely forbidden.


RESULTS

Two hundred and forty-two caregivers responded (94.5%). Almost all caregivers would advise other mothers, whose children are diagnosed with cerebral palsy, to join the group (Table 1). All of them think that there is a great benefit from the group in locating the whereabouts of some unattainable/out of stock drugs. Two hundred and forty (99.1%) caregivers think that questions posed in the group are promptly and timely answered; the consultation offered is beneficial and minimises the need to go to hospital or seek a doctor’s appointment. In addition, they think that they benefit from the new acquaintance and communication with mothers whose children suffer from similar conditions which positively impacted their spirits and had a favourable effect psychologically. Two hundred thirty-seven (97.9%) caregivers think that the group has other benefits; however, issues discussed in the group are focused to children with neurodisabilities and its management. Two hundred and thirty (95.0%) caregivers had benefit from the group in attaining financial help. The majority (180, 74.4%) of caregivers think that sharing patients’ data, photographs and videos in this group is ethically sound and does not breach patient’s confidentiality.

Table 1. Feedback of mothers (caregivers) regarding utility of WhatsApp for provision and sharing of medical information (n = 242)

Advice other mothers, whose children are diagnosed with cerebral palsy, to join the group 242 (100.0)
Benefit from the group in locating the whereabouts of some unattainable/out of stock drugs 242 (100.0)
The consultation offered is beneficial 240 (99.1)
Benefit from your acquaintance and communication with mothers whose children suffer from similar conditions 240 (99.1)
Questions posed in the group are promptly and timely answered 240 (99.1)
The consultation offered in this group minimises the need to go to hospital or seek a doctor's appointment 240 (99.1)
Acquaintance positively impact your spirit and has a favourable effect on you psychologically 240 (99.1)
This group has other benefits 237 (97.9)
The issues discussed in the group are focused to cerebral palsy and its management 237 (97.9)
Benefit from the group in attaining financial help 230 (95.0)
Browse through this group daily 223 (92.1)
Benefit from the group regarding nutritional consultations for your child 220 (90.9)
Benefit from the group regarding physiotherapy input for your child 210 (86.7)
WhatsApp is easy and user friendly 199 (82.2)
Sharing  patients' data, photographs and videos in this group is ethically sound and does not breach patient's confidentiality 180 (74.4)

Frequent consultations included where specific drugs can be found, dose of antiepileptic drugs and adjustment when changing drug trade marks, videos of convulsing child, first aids and where to go, investigations results, and nutritional advice.


DISCUSSION

The use of telemedicine is currently a worldwide experience that has been well documented in the literature. The current healthcare commitments that include patient care, documentation and the immense load of training and research make it almost impossible to catch up with current updates or challenging critical cases let alone effective communication with patients. This is even more with regards to clinicians who are pursuing a subspecialty with the impressive patient loads.

Almost all caregivers in this study thought that the use of WhatsApp is very useful in solving their children’s medical problems. A number of studies have examined the usefulness of WhatsApp in clinical decision-making and patient care. Nardo et al. [8] described WhatsApp as low-cost and fast technology with the potential of facilitating clinical communications, enhancing learning, and improving patient care whilst preserving their privacy. The majority of the caregivers in this study thought that WhatsApp is very easy to use and this was similarly reported by Boulos et al. [9] who stated that WhatsApp enjoy ease of use, with generally fast loading times and being free to use and is suitable for low-resource settings.

Although 74.4% of caregiver in this study thought that sharing patients’ data, photographs and videos in this group is ethically sound and does not breach patient’s confidentiality, no discussion of social media in health and healthcare is complete without at least a mention of user (patient) privacy issues on these networks. The WhatsApp is secure, as end to end encryption makes it extremely difficult for anyone other than the participants to gain access to the message contents and hence privacy is maintained, although there have been concerns related to the risks of breaching patient confidentiality. Of course, data protection requirements still remain the doctor’s full responsibility at all times.

Although non-medical chats are completely prohibited, this same group has got a chat-group whereby mothers support each other in a country whereby there is a complete lack of organisations that help in awareness and health education. Hence, social support via group members, or indeed by doctors, is possible at a time whereby the patient-doctor encounter time is becoming very limited. Also, in view of the current economic crisis in the country, some mothers may have difficulty paying for their children’s necessary medications and an immense social support network has been created whereby a money transfer will reach her within hours to avoid missing a dose. This has made a great difference in the outcome of children with epilepsy.

This of course, comes at a cost of more screen time and hence a much-reduced family/leisure time as well as a further added load of ‘out-of-site’ clinical commitments. Therefore in the future, more organised and individually tailored timetable to monitor the time spent here will need to be devised.

In a rapidly evolving world, and the availability of the latest technology at the touch of a button, there must be a move from today’s clinicians’ norms towards better utilisation of available resources to effective patient care and ongoing professional development.


CONCLUSION

Using WhatsApp app is very useful in delivering health advice and consultation and helps the clinicians deliver better care amidst their immense current commitments. It can solve the problems of shortage in neurology service in remote areas in resource limited countries. It also provides care givers support, guidance on immediate action, building trust and offering moral support.


ACKNOWLEDGEMENT

A great appreciation goes to mothers /caregivers who made it all possible.


CONFLICT OF INTEREST

The authors declare that there is no conflict of interest regarding the publication of this article.


FUNDING

None.


ETHICAL APPROVAL

The study was approved, and an ethical clearance was given by the Ethics Committee of the Faculty of Medicine, University of Khartoum, Sudan. Informed consent was taken from all participants, and confidentiality was ensured at all levels.


REFERENCES

  1. The World Factbook—Central Intelligence Agency. Available from: www.cia.gov.
  2. Telecommunications in Sudan. Wikipedia, the free encyclopedia. Available from: https://en.wikipedia.org/wiki/Telecommunications_in_Sudan
  3. Boulos MNK, Brewer AC, Karimkhani C, Buller DB, Dellavalle RP. Mobile medical and health apps: State of the art, concerns, regulatory control and certification. Online J. Public Health Inform. 2014;5(3):229. https://doi.org/10.5210/ojphi.v5i3.4814
  4. Astarcioglu MA, Sen T, Kilit C, Durmus HI, Gozubuyuk G, Kalcik M, et al. Time-to reperfusion in STEMI undergoing inter hospital transfer using smartphone and WhatsApp messenger. Am J Emerg Med. 2015;33(10):1382–4 https://doi.org/10.1016/j.ajem.2015.07.029
  5. Bergeron D, Iorio-Morin C. In reply to the letter to the editor “other apps beyond WhatsApp”. World Neurosurg. 2019;130:568. https://doi.org/10.1016/j.wneu.2019.06.167
  6. John B. Are you ready for general data protection regulation? BMJ. 2018;360:k941 https://doi.org/10.1136/bmj.k941
  7. Mohamed IN, Elseed MA, Hamed AA, Abdel-Rahman ME, El-Sadig SM, Omer IM, et al. Prevalence of epilepsy in 74,949 school children in Khartoum State, Sudan. Paediatr Int Child Health. 2017;37:188–92. https://doi.org/10.1080/20469047.2016.1278110
  8. Nardo B, Cannistrà M, Diaco V, Naso A, Novello M, Zullo A, et al. Optimizing patient surgical management using WhatsApp application in the Italian healthcare system. Telemed J E Health. 2016;22(9):718–25. https://doi.org/10.1089/tmj.2015.0219
  9. Boulos MNK, Giustini DM, Wheeler S. Instagram and WhatsApp in Health and Healthcare. Univ Br Columbia. 2016;37:1–14. https://doi.org/10.3390/fi8030037


How to Cite this Article
Pubmed Style

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudan J Paed. 2021; 21(1): 48-52. doi:10.24911/SJP.106-1596913564


Web Style

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. http://www.sudanjp.com/?mno=123078 [Access: May 13, 2021]. doi:10.24911/SJP.106-1596913564


AMA (American Medical Association) Style

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudan J Paed. 2021; 21(1): 48-52. doi:10.24911/SJP.106-1596913564



Vancouver/ICMJE Style

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudan J Paed. (2021), [cited May 13, 2021]; 21(1): 48-52. doi:10.24911/SJP.106-1596913564



Harvard Style

Mohamed, I. N. & Elseed, . M. A. (2021) Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudan J Paed, 21 (1), 48-52. doi:10.24911/SJP.106-1596913564



Turabian Style

Mohamed, Inaam N., and Maha A. Elseed. 2021. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudanese Journal of Paediatrics, 21 (1), 48-52. doi:10.24911/SJP.106-1596913564



Chicago Style

Mohamed, Inaam N., and Maha A. Elseed. "Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan." Sudanese Journal of Paediatrics 21 (2021), 48-52. doi:10.24911/SJP.106-1596913564



MLA (The Modern Language Association) Style

Mohamed, Inaam N., and Maha A. Elseed. "Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan." Sudanese Journal of Paediatrics 21.1 (2021), 48-52. Print. doi:10.24911/SJP.106-1596913564



APA (American Psychological Association) Style

Mohamed, I. N. & Elseed, . M. A. (2021) Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children with neurodisabilties: experience from Sudan. Sudanese Journal of Paediatrics, 21 (1), 48-52. doi:10.24911/SJP.106-1596913564





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