Parents Perceived Effects on Usage of the Adaptive Positional Devices for Children with Delayed Developmental Milestones

Introduction

Cerebral Palsy (CP) is a non-progressive lesion of the immature brain that results in impairment of movement and postural control and is the most common physical disability in childhood.¹

Harris and Roxborough concluded that seating interventions stabilized the pelvis and increased the seating base of support that optimized postural control.¹

Despite widespread clinical use, little is known about the effect of seating technologies on the activity performance of young children with CP at home. To address this gap in knowledge, a study was conducted to examine the impact of adaptive positional (seating & standing) devices on important, parent-identified activity performance issues at home. We asked the questions before and after the usage of the adaptive positional device and along with that device satisfaction levels were also collected.

Investigators have reported significantly higher stress levels in parents of children with developmental disabilities, autism and pervasive developmental disorders, Down syndrome, and cerebral palsy, when compared with the stress levels experienced by parents of the same-aged children without disabilities.^2,3

Parents who have young children with complex physical disabilities face challenges that are both physically and emotionally demanding. Parents of children with disabilities spend more time providing child assistance and supervision than other parents because their children are unable to do many everyday activities on their own.² These added responsibilities, for mothers in particular, translate into less time attending to their own needs, the needs of their other children, and household chores. Most mothers do not have time to work outside the home.

Other researchers suggest that parents of children with disabilities have a higher risk of child maltreatment, dysfunctional relationships, and unemployment than parents of children without disabilities. ²

We hypothesized that adaptive positional device used by young children with complex positioning problems at home would enhance functional outcomes for children and provide a measurable form of relief for families by reducing caregiver burden. Hence, to determine the parent-perceived effects on usage of adaptive (seating and standing) positional devices on the lives of young children with cerebral palsy aged 2 to 14 years, and their families.

Materials and Methodology

The Baseline-intervention (Pre and Post interview) method was used at Mobility India centre, Community based rehabilitation projects (Urban, Rural, and Grass Root Organisation), with fifty-two parents and their children with Gross motor function classification system (GMFCS)* level IV and V, of cerebral palsy for duration of six months.

*Gross motor function classification system (GMFCS) level IV:

Children use methods of mobility that require physical assistance or powered mobility in most settings. They may walk for short distances at home with physical assistance or use powered mobility or a body support walker when positioned. At school, outdoors and in the community, children are transported in a manual wheelchair or use powered mobility. (Figure 1).

Gross motor function classification system level V:

Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control leg and arm movements. (Figure 2).

Inclusion criteria:

Child with developmental disabilities, autism and pervasive developmental disorder, down syndrome and cerebral palsy, in the age range of 2-14 years, with GMFCS-IV, V and with prescription of adaptive positional device by the rehab team (Doctor, Physiotherapist, Occupational Therapist, & Orthotist) were included in the study. Subjects not satisfying inclusion criteria, those who were more than 15 years of age, and GMFCS- I and II, III were excluded.

Main outcome measures:

Pre and Post Positional Device Questionnaire & Quebec User Evaluation of  Satisfaction with Assistive Technology –QUEST** (Version 2.0).

**The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) was designed as an outcome measurement instrument to evaluate a person’s satisfaction with a wide range of assistive technology (AT).

All participants were explained the procedure and intention of the study. Once the participants were selected based on the inclusion and exclusion criteria, informed consent was taken.

The Pre-Positional Questionnaire (Annexure 1) was administered on the first day of the measurement. It had a set of questions to understand the child’s milestones and parent’s engagement in household and earning activities, time taken in child care & comfort, the safety features of previous positional devices and quality of life of a child.

The Post-Positional Questionnaire (Annexure 2): The adaptive positional devices were provided as an intervention for children with delay in milestones. Children used these positional devices at least for three months, and then a post-positional device questionnaire was administered through telephone, email, or direct interview. The post usage questionnaire had a set of questions on the child’s milestones and quality of life of the child, parent’s engagement in household and earning activities, and time taken in child care. Pre and post findings were analysed. Responses were in YES or NO type format.

The QUEST was administered after three months of usage of the positional devices. The purpose of the QUEST was to evaluate how satisfied the parents were with the adaptive positional device. The QUEST was used to analyse two major sections a) Assistive Device and b) Service. The outcome measures included 12 items. Resulting score was rated on the scale of not satisfied at all (1) to very satisfied (5). (Annexure 3).

The adaptive positional devices (seating, standing) used in the study were designed by Mobility India, having adjustability in the height and depth. These features suits maximum age and size ranges for children with delayed developmental milestones.

Data was collected in Mobility India outpatient rehab clinic, urban, rural community-based rehabilitation (CBR) projects in Karnataka and grass root organisations in Andhra Pradesh. Concerned co-ordinator and rehab staff along with community facilitator visited the home and administered the questionnaires. In some cases, the beneficiaries visited the concerned rural grass root centres for interviews. Post Positional Device Questionnaire and QUEST were administered after three months of the usage.

Mobility India at Outpatient Rehab Clinic:

Six beneficiaries were administered with the prequestionnaire and two beneficiaries could turn up for three month review. Pre-positional device questionnaire helped to understand the difficulties of parent’s daily routine, child caring, schooling, social inclusion, and the effects of therapy intervention & the postural issue and its management.

Post positional device questionnaire had questions related to device which included the ease of usage, compactness, cost of the device, adjustability, and possibility of (sitting and standing) options in device, and the material used and reported positive feedbacks (YES) from the two beneficiaries. The positive change in child’s position, parent’s lifestyle change, appropriateness and comfort, playing with other kids and sibling, physical growth, diet, appetite, and ease of passing stool, balance, caring of child and work life were answered as YES in the Quality of the life sections. Remaining four users did not come for review after three months of the positional device usage due to personal reasons or being not in station, or were not reachable on telephones. For Q6, respondents answered as “NO” regarding the option of availability of sitting and standing features in the same device. QUEST total scoring for two users was 4.91 and 4.83 (Quite satisfied to very much satisfied). Most important satisfactory items were easy comfort, effectiveness & safety, comfort, service delivery.

Mobility India Urban CBR Projects: Nine beneficiary parents were interviewed in different areas of urban slums where the organisation operates. Pre- positional questionnaire had mixed responses for questions related to awareness and availability of the appropriate adaptive positional device and all the nine respondents answered “NO” for the question enquiring if any device helped in caring child and work life, play and mingling with other kids/siblings. Eight parents responded in “NO” when asked if there was any functional improvement in past six months of not using any kind of adaptive positional devices.

Post the usage of the adaptive positional device for sitting and standing, parents were satisfied and expressed its usefulness and need for these kinds of devices. Eight parents responded in positive feedback (“YES”) to the question enquiring if the devices were compact and appropriate in weight, benefits of adjustability features in the height, hip width and footrest. Cost of the device appropriateness was not applicable for the parents from CBR projects as device were delivered free or in subsidised cost.

As a design improvement requirement, all the nine users had expressed the option of one device that could have both the features of sitting and standing. The parents were not concerned about plywood being the key material for fabricating the devices.

Nine beneficiaries averaged between a score of 4.5 to 5 (Quite satisfied to very much satisfied in QUEST) for the satisfaction of the device and service offered. Ease of use, safety, and comfort, professional service delivery were selected as the most important points.

Mobility India Rural CBR Projects: Twelve beneficiary parents’ interview were carried out in different villages of Chamarajanagar, Karnataka rural area. Most of the parents did not have basic information about the use and availability of adaptive positional device for cerebral palsy or other developmental disorders in these regions. The children were left in lying position throughout the day. However, few unique ideas and models of supportive devices were developed by few parents with local and reusable materials, though the issues of comfort, safety and effectiveness were not significant in these devices.

The Post Positional questionnaire showed as many as 11 parents expressing positive changes in the functional ability, child caring, parent’s daily routine, school, social inclusion, the therapeutic effects, the child posture and its management. The organisation does the service delivery at doorstep to address the challenges of transportation and acceptance of the adaptive positional device in the rural setting. In CBR projects, devices were delivered for free or in subsidised cost.

Twelve beneficiaries were interviewed and the scoring for the satisfaction on the devices and service was an average of 4.5 to 5 (Quite satisfied to very much satisfied in QUEST). Commonly selected options were ease of use, safety, durability as important points from the list. Repairs and follow up was done by the rehab team as a regular planned activity without any demand from the service user.

Mobility India Supported Partner Organisations: Twenty five beneficiaries’ parents were identified from Bhagavatula Charitable Trust and The Ability People organisation in Andhra Pradesh, working for the rural development projects and rehabilitation of the persons with locomotors disabilities. Most of the parents did not have information on availability of device for cerebral palsy or other developmental disorders in this region and as a common practice, the children were left in lying position for most part of the day.

The 25 beneficiaries responded regarding the usage of the adaptive positional devices after three months and responses were collected. Mean average of 22 (88%) parents reported that adaptive positional devices had played a major role in the (quality of life) improvement and achieving the functional and gross motor abilities. In these projects, devices were delivered free of cost or in subsidised cost.

They scored 4.5 to 5 (quite satisfied to very much satisfy in QUEST) for the satisfaction on the device and services. Ease of use, safety, durability were selected as most important items for positional devices. Repairs and follow up of devices were carried out by the rehab teams of the partner organisations as per the request from user and part of a regular planned activities without any demand from the service users.

Ethics & Funding

Institutional permission was obtained from Mobility India and the organisations involved in this study. Information about the study and that the participation was voluntary was given to the participants. Participants were informed that they could withdraw from the study at any time during the interview and can choose not to answer specific questions if they did not want to. Participants were also informed that data would be handled with confidentiality. Written informed consent was obtained from all the participants.

Results

Pre-positional questionnaire indicates that only 20% (10) of the parents were aware of the availability and options of developmental devices and they had tried unplanned approaches to support the child. However, most of the parents felt that prior to the usage of the adaptive positional device, child position, child caring, parent’s engagement in carrying out their household and income generation activities, were difficult and time taking. The mother was completely involved in caring of the child. 

Post positional questionnaire indicated that on usage of the device, even for a short duration like three weeks, more than 40 parents (>77%) reported that the device helped in positioning the child almost upright, improved feeding, enhanced eye contact with siblings and family members, improved communication by signing, indication and purposeful sounds making.

The parent’s perceived percentage of change in child improvement was compared without a positional device and with positional device as an intervention for children with delayed milestones.

In outpatient rehab clinics, for children without positional devices, the status of percentage of improvement was 23% and with positional devices, the intervention was enhanced to 62% for two beneficiaries. In CBR-urban, child improvement status was 21% and with positional device, the intervention was 73% for nine beneficiaries. Whereas in CBR rural, it was 25% and with positional devices, it was 90% for eleven beneficiaries. In partner organisations, it was 16% compared to 77% with positional devices for 25 beneficiaries.

The device features such as ease of handling, adjustability and material selection have shown marked responses.

The outcome of the QUEST reviews are depicted in Figure 15. In rural and grass root organisation project areas, there were not enough therapy interventions from the professionals and it was usually the rehabilitation therapist assistant who visited three or four times in a month to train and monitor the parents on the therapeutic skills, aids and appliances. Adaptive positional device had a major role in the improvement of the functional and gross motor abilities of the children.

Overall 65% (31) of the beneficiaries had an average score of 4.5 to 5 (Quiet satisfied to very much satisfied) on the device and services. Ease of use, safety and durability features of the devices were highlighted by >70% (34) of the users and were selected as the most important points from the list. Repairs and follow up were done by the rehab team of Mobility India and partner organisations in a planned manner.

Discussion

The findings largely reflect the parent’s views about the impact of the study devices.

Adaptive positional device can have an enabling influence on the child: The parents reported positive feedback that their children were sitting in better positions, their skills had improved, were happier and more eager to sit and do activities for longer periods, were able to engage themselves in face-to-face social interactions resulting in more socialization with members of the family and with friends on using the adaptive positional devices.²

Parents find adaptive positional device useful: Parents expressed during the interview that their children needed less help with the usage of the adaptive positional devices. Parents of children from rural projects and grass root organisation described how the child was able to join the family for meals, school, games, and social interactions.²

This is important because the primary goal for a therapist who prescribes adaptive seating is to provide the child with CP a safe, stable seated posture from which the child can engage with controlled upper extremity movements enabling the child to engage actively in many daily activities, including play and self-care.^{1, 4}

Roxborough found that postural control, pulmonary function and psychological skills improved with some adaptive seating interventions. However, she found little evidence for the effect of seating on self-care.³

Ryan SE reviewed and concluded that the introduction of adaptive seating devices had a meaningful, positive impact on key aspects of child and family life, while absence of adaptive positional devices indicated a marked, negative effect on their lives.⁴ Environmental resources, such as adaptive seating and other assistive technology devices may have an important role to play in the lives of young children with physical disabilities and their families.⁴

Two important implications for clinical practice and future assistive technology research arise from our study. We learned that there were many children who were not using adaptive positional devices in their homes. This finding also raises questions about how aware therapists are of adaptive positional device that could be used to support functional outcomes for children in their homes, especially in developing countries and less resource settings.⁴

The children’s hand functions, diet and bladder and bowel routines had improved. Devices were used regularly in the schools and during play with other children and siblings. The positional device usage had a significant effect on achieving the milestone, in addition to therapeutic intervention. A number of studies have evaluated sitting posture and various features of adaptive seating devices for children with CP.⁵

The QUEST also enables the clinicians prescribing adaptive positional device to use a family-centred perspective. Most of the parents felt that it a challenge to have separate devices for siting and standing for the child and that too when the living conditions and environment is not favourable. It was felt that if there could be a possibility of having a single device with adjustability in width, height, depth features, along with sitting cum standing possibilities to be used in outdoor and indoor environments, it could be more useful facilitating less involvement of professionals, cost efficiency and better space management.

Conclusion

The usage of the adaptive positional device for children with delayed developmental milestones helped in the better caring, child feeding, positioning, improved eye contact, allowing more time for parents for their household and income generation activities and better social participation. The findings of the study reinforce the need to remind rehabilitation technology practitioners to be careful to match between the goals and circumstances of individual children with CP and their families, and the opportunities for functional gains afforded by adaptive positional devices.