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Parental experiences of telerehabilitation for children with special needs: An exploratory survey
Noufal Thadathukunnel Hameed1, Sisira Chalapurath Satheesan2, Jameela Padmalayam Santhamma1
1 Thanal Academy of Rehabilitation Studies, Kozhikode, Kerala, India
2 Government Mental Health Centre, Kozhikode, Kerala, India
|Date of Submission||26-Dec-2020|
|Date of Acceptance||05-Jul-2021|
|Date of Web Publication||19-Aug-2021|
Noufal Thadathukunnel Hameed,
Thanal Academy of Rehabilitation Studies, Kozhikode, Kerala
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Context: The COVID-19 pandemic's emergence necessitated that clinic/hospital-based rehabilitation is replaced or substituted by other modes. Using telecommunication devices was found a convenient alternative. Aims: Present study explored the telerehabilitation experiences of the parents of children with developmental disabilities (CDD). Settings and Design: The study was conducted among the service users of a not-for-profit NGO located in Kerala. Parents of children with one or more developmental disabilities formed the population of the present study. The present study was a cross-sectional exploratory survey. Subjects and Methods: A total of 205 parents took part in the study using a brief open-ended survey. The majority of the participants were females (65%). Statistical Analysis Used: The sociodemographic data were analyzed using frequency and percentage. The qualitative data were analyzed using thematic analysis. Results: Overall, the study found that parents experienced more challenges in telerehabilitation compared to face-to-face interventions. Perceived challenges included externalizing problems, reduced effectiveness, logistical issues, multiple disabilities, and the child's lack of interest in gadgets. Perceived advantages included the child's liking for the device and increased availability of time. Conclusion: In short, the study throws light on the various challenges experienced by parents in implementing telerehabilitation for their CDD. The findings strongly recommend fine-tuning telerehabilitation programs to meet these challenges to provide optimal care to our children with special needs.
Keywords: Caregiver experiences, COVID-19, developmental disability, telerehabilitation
Among the various forms of disabilities that impact individuals' lives, developmental disabilities make a significant proportion. Developmental disabilities are likely to continue indefinitely. While the prevalence of developmental disabilities s not very well known in India. India has the world's largest child population who have a high risk for developmental disabilities. Children with developmental disabilities (CDD) experience many difficulties in their lives and may need support to live, attend school, or work independently. Several effective, evidence-based therapeutic and rehabilitation interventions have been established during the past, promoting the living conditions of CDD. Thanks to these interventions, the life expectancy of most CDD now approaches that of the general population.
The COVID-19 pandemic outbreak had a considerable impact on these services worldwide-many centres shutting down services completely. Subsequently, there were efforts to restart the services, at least partially, considering the high need for continued care for the CDD. A considerable momentum to this came from using the internet and other information technology as a medium for providing services. While online mental health services have been there for some time, since the beginning of the COVID pandemic, there was an exponential increase. Also, several studies suggest that online psychological care of various kinds is as effective, if not more, as direct face-to-face services. However, the use of the same for CDD with disabilities is unknown. They remain one of the least represented populations for using an online platform for therapeutic services. It is also essential to understand the experiences of parents of CDD, considering that they are often the primary caregivers of these children playing an integral role in the therapy and rehabilitation. Considering the need for continuing therapy for CDD and the limitation placed upon providing the same face-to-face, understanding the experiences of parents of CDD regarding the same could be of extreme value for the scientific community and practitioners.
| Subjects and Methods|| |
The study adopted a cross-sectional mixed-method design. A total of 205 parents who had at least one child with a developmental disability and provided informed consent took part in the survey. The survey also required that the responding parent be staying with the child. Sample selection had no other inclusion or exclusion criteria. The survey covered a few demographic details (type of disability, therapies received, gender of the responding parent, employment status, and self-reported socioeconomic status) and open-ended questions regarding the telerehabilitation experiences of parents of CDD. The exploratory part included three items, viz. challenges experienced in telerehabilitation, advantages experienced in telerehabilitation, and challenges associated with specific therapies. The telerehabilitation included provision of various therapies over video call and/or online platforms. Considering the urgent need for providing continuing therapy, ongoing therapies were provided over the above-mentioned platforms with each therapy team making necessary changes on a need basis.
The survey was accompanied by an informed consent form which described the study. Those who wished to take part in the study were required to read the same and return the filled survey along with the consent form. Centre-in-charges distributed the survey among the other professionals in-charge of specific parent groups. The survey was sent through E-mail/WhatsApp to each respondent separately. The respective center-in-charges collected the filled-in survey. From the center-in-charges, the survey forms were sent back to the authors. The data was collected during the initial 2 weeks of September 2020. The qualitative data were analyzed using the guidelines provided by Braun and Clarke. The authors read the descriptive data several times to familiarize themselves with the same. Following this, the authors generated initial codes, which were grouped into meaningful categories. All three investigators evaluated the initial codes and the emerging themes for improving the reliability of the themes. The data were collected in the native language, which was coded in the same language. Only after the themes were elicited, the same was translated into English. While the translation was not done by any professional body, each author agreed upon the terms used. The speech excerpts given for each theme are also translated versions of the reports by the study participants.
| Results|| |
Sociodemographic and clinical details
The majority of the respondents (n = 134, 65%) were female. Slightly more than half of the participants belonged to the middle socioeconomic strata. Four out of ten children whose parents responded in the survey had multiple disabilities. Intellectual disability was reported in about one out of every five children. Other forms of disability reported included cerebral palsy, autism spectrum disorders, attention-deficit/hyperactivity disorder, and learning disorder. On the item on employment status, most male participants (62%) did not reply. Furthermore, 93% of the mothers reported not being engaged in any paid employment. Interventions provided in the centers where the data collected included psychotherapy, speech therapy, occupational therapy, physiotherapy, and special education. Special education was the most common intervention received (85%). A lesser number of children sought other forms of therapy.
Parental experiences of telerehabilitation
Understanding parents' experiences of telerehabilitation were the main aim of the present survey. Specifically, the survey focused on two aspects of the interventions-the perceived difficulties and the advantages of telerehabilitation.
Difficulties experienced in the telerehabilitation
The analysis showed that most parents (73%) experience significant difficulties in the following telerehabilitation. Only a minority of the parents (9%) reported having no such difficulties. Eighteen percent of the participants did not answer this item. Important difficulties reported include externalizing behaviors, reduced effectiveness, logistical issues, multiple disabilities, and lack of interest in mobile phones.
One of the most frequently reported challenges was the presence of one or other behavioral issues. Within this category, various behavioral issues reported included demanding behavior, poor cooperation, and poor attention span. Other issues reported included biting, hitting, and spitting behaviors from the child. It is worth mentioning that parents reported a worsening of existing behavioral issues and newer behavior issues.
One of the parents remarked that:
“Doing therapy at home regularly is difficult. Unlike in the centre, the child I not sitting nor agreeing to do what is asked. This difficulty was there before, but now it has become more.” – Parent of a child with intellectual disability.
Another important finding from the survey was that, in general, respondents felt that telerehabilitation is not as effective as direct interventions. There was a perception that doing various therapeutic routines always at home, without close supervision or immediate feedback, are less effective. Another essential concern relevant was the reports that reduced therapy effectiveness has to do with the ineffective communication between the therapists and the caregivers.
Concerning this, one of the parents reported:
“It is difficult to understand what needs to be done exactly. My child's therapist does explain in detail but difficult to comprehend when over the phone. I am not able to clarify my doubts as I could do when the sessions were face-to-face. Maybe that is also the reason why I feel therapy through the phone is not very effective. I do not feel happy or satisfied.”– Parent of a child with an intellectual disability.
The logistics of doing a particular therapy was another difficulty reported. Lack of necessary equipment for doing the therapy at home was one of the main concerns that fell in this category. This concern was specific to specific therapies. For example, most parents reported doing physiotherapy and occupational therapy at home as the most difficult among the various therapies. A poor or fluctuating network was yet another concern. Further, a few parents also reported not having a smartphone or internet connectivity to follow the therapy directions. A smaller proportion of the participants also reported financial issues as the reason for having these difficulties.
On this, a parent reported that:
“We try to follow the instructions provided by the therapists. The trouble is, for my child, I need a lot of equipment to do the therapy effectively. And we cannot afford to have it for him. This way, we are limited to a great extent.” – Parent of a child with multiple disabilities.
The presence of multiple disabilities or impairments was a factor making telerehabilitation a challenging task. Parents of children with multiple disabilities reported the added burden of planning to manage the complex issues caused by multiple disabilities.
For example, one of the parents reported:
“My child has more problems. I do manage him daily. But to do things as suggested by the therapists, I feel it is more difficult without him present. If it was just one problem, I think it might have been easy. Having all these issues, it is making me feel lost. I sometimes have no clue how to manage him.” – Parent of a child with multiple disabilities.
Lack of interest in mobile phone
The child not interested in using the mobile phone was also reported as a factor making telerehabilitation challenging. Some of the parents reported that children who used to perform various activities when given face-to-face, their interest was reduced when the same had to be done using a mobile phone or a gadget. Furthermore, this lack of interest made it difficult to make the child sit for an adequate duration so that the therapist could interact.
One of the parents reported:
“My child does not like these mobile phones and computers and all. I can't make her sit in front of it for even a short period. So, I am trying to listen to the therapists as much as possible and then follow it up on my own. I really want to know how to make my child use the phone without much trouble.”– Parent of a child with autism.
A clash of caregivers' routine with that of the therapy time, the child getting distracted by other mobile phone features, and reduced interaction with other children were also reported as various telerehabilitation challenges.
Advantages experienced in telerehabilitation
Only a minority of the parents (14%) reported any advantages for telerehabilitation. Various themes that emerged in this category are outlined in the following table.
Child's liking for gadgets/mobile
Among the few advantages that survey respondents reported that telerehabilitation has, the most cited was the child's liking for gadgets/mobile. It was easier for some parents to engage in activities using the mobile phone as their children already liked the same. Access to the mobile phone without demanding it improved the child's cooperation to follow various instructions. Added to this was the fact that a few parents reported the child's attention has improved as the child likes mobile phones while using it for a healthy purpose.
One of the parents observed:
“My son likes the mobile phone. He has only a few things that he likes. Mobile phone he likes. So, it is easy for me to make him sit in front of it. I do not have to force him to sit in front of it.” – Parent of a child with multiple disabilities.
Increased availability of time
Another advantage of online telerehabilitation included increased availability of time for parents to spend with their children. Some parents reported that as the lockdown was going on, most family members were at home, enabling them to get more time with the child. Telerehabilitation also reduced the need for traveling, leading to reduced time and effort spent. It is also important to note that some parents reported increased support from the family members during the lockdown time.
For example, one of the parents said:
“Now we don't have to travel to the centre, which takes a lot of time. It is also a lot of effort to get the child ready, and we also have to take care of other children. Now that issue is solved. We have a bit more time.”– Parent of a child with multiple disabilities
| Discussion|| |
The present study explored the telerehabilitation experiences of parents of CDD. The participants were the consumers of a not-for-profit NGO in Kerala. In particular, the study looked into the challenges and advantages of telerehabilitation received for their children.
One noteworthy finding from the present study was the gender proportion of study participants, with the female participants making up to two-thirds of the overall sample. While the sample collection did not restrict the gender of the parent who took part, the greater number of mothers responding can be attributed to the fact that taking care of children with DD is mainly mothers' responsibility. Indeed, several studies report women as the predominant caregivers for people with physical and mental disabilities.
Another important observation from the study is that there is a higher percentage of children with multiple disabilities. This has important implications for the provision of optimal therapeutic care. For instance, it is said that children with multiple disabilities face unique challenges due to the increased complexity in the difficulties experienced. For example, while the needs of a child with autism itself are complex and difficult, having another disability, such as low vision, can make it all the more difficult. This was shared by many of the participating parents in the present study.
The current employment status revealed a striking difference between gender. Only a lesser proportion of male participants responded to the item on employment status. However, all those who responded were employed. Compared to this, only a very small minority of the women respondents were employed. This, to a great extent, reflects the employment status of women in general in society. The World Bank Group report on India's labor force status shows that only 19.9% compared to 76% among men. The trend of reduced female participation in the labor force is seen across countries. This is especially true for women who take care of family members with disabilities. It is also important to note that this has significant implications on the social, political, and financial empowerment of women who are the primary caregivers of CDD. The interview data analysis revealed the concern of mothers regarding the inability to support themselves financially. Some of the mothers did share the concern of being left alone to take care of the child. For them, the experience of caregiving and not being employed felt like a double disadvantage.
Among the various interventions that the children received, special education was the most frequent one. This was due to the nature of centres where the data was collected, where every centre had a large proportion of children taking special education. While an enumeration of the therapies received by each child could not be done, there was no instance where a child received just one intervention. This also reflects that a large proportion of the children were reported to have multiple disabilities requiring interventions from various rehabilitation professionals.
Parental experiences of telerehabilitation
Exploration of parents' experiences of telerehabilitation provided valuable insights. A striking observation from the study was that most participants reported significant difficulties in utilizing the telerehabilitation programs. Several factors were reported making the telerehabilitation experience a challenging task compared to the in-person interventions.
Among these, the presence of externalizing behaviors was one of the biggest challenges. Several parents reported behavior problems such as biting, hitting, hyperactivity, etc., made telerehabilitation difficult. Furthermore, several children showed an increase in their preexisting behavior problems. Many others showed behavior problems that were not seen before. Considering children with DDs show a significantly higher level of behavior problems than typically developing children, a worsening of the same. Also, the present study had more participants reporting multiple disabilities worsening the easiness of telerehabilitation efforts. Indeed, studies suggest that children with multiple disabilities show more behavior problems than those with a single disability. One must also consider the finding that effective telerehabilitation services were found to address children's behavioral functions.
Another challenge to telerehabilitation was its perceived effectiveness. There was a strong perception that online interventions without seeing the therapist were not effective for many parents. In continuation with the above, parents of children with multiple disabilities voiced this concern rather strongly. The effectiveness of any therapy depends a lot on the client's adherence. A belief that a particular mode or form of therapy is less effective can negatively influence adherence, leading to an actual reduction in intervention effectiveness. Furthermore, research shows skepticism on the part of the consumers can be a hindrance to the effectiveness. Hence, it is important to take measures to explore deeply into ways of managing this.
One particular aspect that was seen about the discussion of effectiveness perception was the reports by many parents about the effectiveness of communication between the parents and the therapist. Many parents reported poor communication between the therapist as the main reason for this perceived ineffectiveness of telerehabilitation. An abundance of studies has shown how essential optimal communication in therapeutic interaction. Furthermore, communication difficulty was perceived differently for different therapies. For example, parents of children who required physiotherapy reported more difficulty compared to other therapies. It may have to do with the way the therapists interact with the clients in various therapies. For example, one study finds that touch is the most used nonverbal communication tool by physiotherapists. This finding strongly recommends developing tools to improve communication between the professional and the client in telerehabilitation. For example, pamphlets or additional reading materials for the clients in psychotherapy or demonstration of a particular exercise through a video for physiotherapy could add a lot to effective communication. In addition, this also points to the need for providing structured and empirically valid training programs for the therapists on the telerehabilitation methods.
Another set of challenges in telerehabilitation pertained to logistical issues. Many parents reported that they do not have access to various equipment needed for intervention. This was mainly the concern for physiotherapy and occupational therapy, followed by special education. Excluding a few, most parents could not afford the required therapy equipment personally. Even in face-to-face therapy, the lack of necessary infrastructure is often reported, including in India. The majority of the parents depend on the facilities available in the therapy centers for the necessary intervention. Being denied would have caused a significant reduction in telerehabilitation effectiveness. This finding is a reminder of the need for finding alternative ways of making up for this shortage.
The child having multiple disabilities was another factor making telerehabilitation difficult. Parents reported that even when the interventions were made face-to-face, interventions were challenging. While this was felt from their interaction with other parents who had children with a single disability, the difficulties worsened when the face-to-face services were stopped. Logistical issues aside, this may have to do with the fact that compared to children with a single disability, a child with multiple disabilities is widely heterogeneous, possessing unique characteristics, capabilities, and learning needs. When we consider that the present study had a major proportion of children with multiple disabilities, it becomes important to understand what could be done.
Finally, the parents reported a unique challenge-the child's lack of interest in mobile phones or other gadgets. While only a few parents reported this issue, they found it significantly deterring their attempt to make the child follow the therapist. Some of them reported that the child has such a lack of interest in the gadgets that the children refuse to engage in interactions that they had no difficulty when it was done in person. This is a challenge that is probably unique to telerehabilitation. At present, the authors could not find any mention of such a difficulty in the existing literature. Telerehabilitation employs the use of communication devices to interact with clients and caregivers. Further research must be done into this area and form plans to overcome this difficulty.
In the survey, only a couple of advantages were reported by parents. Unlike the parents whose children had no interest in gadgets, some parents found it very convenient. These were the parents whose children already liked to use mobile phones or gadgets. Parents felt that, with the increased use of mobile phones for therapy purposes, they could find a healthy use. Using a medium that is the client is already prefers can be extremely facilitative of continued and effective therapy. Yet another advantage of telerehabilitation was the increased availability of time. As the child and the caregiver could stay at their homes, and there was no need to travel to and from the therapy centers, this saved time, effort, and reduced expenses. Since the very beginning, convenience, savings in travel costs, and waiting time are found some of the benefits of online healthcare.
| Conclusion|| |
To conclude, the present study explored the experiences of parents of CDD regarding the use of telerehabilitation. Overall, the perception was that telerehabilitation is more difficult and is less advantageous to face-to-face interventions. Keeping in mind the current scenario and the need for continuing online modes of interventions, this poses a significant challenge to providing optimum care for CDD. It is important for the various stakeholders to deliberate, plan, and implement strategies to overcome the various challenges. Only a coordinated and continuous effort from the policymakers, healthcare providers, and the service users alike, the dream of providing the best possible care to our vulnerable children. Only then the goals of development could be achieved meaningfully.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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