Setting
The study was conducted at Aga Khan University Hospital, a tertiary care teaching hospital and Joint Commission International accredited hospital (JCIA) in Karachi, Pakistan. Annually about 75,000 out-patients visit the pediatric outpatients’ clinics. Well-baby clinics are conducted within Paediatrics, but developmental monitoring is yet to be established in the system. The fee structure of AKUH is comparable to other private tertiary health centers within the city. Patients are primarily from Karachi and surrounding urban and rural areas within the province of Sindh.
One of the few studies conducted on parental stress of those with children with intellectual and physical disabilities found that parental anxiety and depression increases significantly with the child's severity of disability [20]. Barriers such as social stigma and cultural norms, inadequate health infrastructure and shortage of qualified professionals in ECD prevent parents from seeking appropriate timely support for their differently abled child [21]. The implementation of the World Health Organization Global Disability Action Plan in Pakistan (GDAP) requires engagement of healthcare professionals and public-private institutional partnerships in order to provide appropriate awareness and rehabilitative access to patients and parents with ECD needs [22].
Workflow
In the outpatient clinic at AKUH, patients book their appointments online or by calling the hospital helpline. Patients are expected to arrive and register and pay the consultation fee 20 minutes prior to the appointment time. Next, the child/parents are then called into the assessment room where a nurse records, in the patient file, the child's height, weight, temperature, blood pressure, risk of fall, known allergies, and any prescribed medications. The patient file is shifted to the file tray outside the physician’s consulting room and parents/families are then requested to be seated in the waiting area until they are called to meet with the consultant. Average time spent in the clinic from start to finish ranges from 75 to 120 minutes. Waiting time varies from between physicians, ranging from 40 to 80 minutes. No toys, play equipment or books are currently available in the waiting area for children and their parents to utilize during long waiting times. One physician on average may see up to 112 patients per month (ranging from 55 to 235 patients monthly per physician, depending on specialty).
Research Design
This feasibility study [23] was conducted as quality improvement project [24] in the paediatric service line at the AKUH for improved patient and family experience of care. The primary considerations of feasibility were physical space/design, human and material resources, and physician follow-up with patients identified to be at developmental risk.
Sample
The inclusion criteria comprised all the children (patients) who visited the ten selected physicians in AKUH outpatient department (OPD) and age range: birth to 5 ½ years. The physicians were selected to cover a broad range of disease: acute care (6 out of 18 general pediatricians at AKUH), complex care (3 of 6 pediatric cardiologists at AKUH) and developmental care (one of 2 specialists at AKUH). Prior permission from physicians was sought to complete developmental screening with their patients. Permission was obtained from the 10 physicians to conduct research with their patients. The parents of the patients were briefed about the purpose of the survey and verbal consent was obtained. The study was approved as a quality improvement project by the AKU Ethics Review Committee.
Intervention design
The implementation opportunity was identified by an Early Childhood Development (ECD) specialist in the service line and also serving as the Director Patient Experience. The study was conducted between August 2019 and February 2020 as part of the overall patient and family centric initiative that was in place since October 2017. The aim of the initiative was to create a culture that valued patient and family experience with the service [25]. The intervention model was designed using the Theory of Change (ToC) guided by the following principles at micro-level: ensure value addition for all stakeholders, leverage existing strengths, keep it simple and cost-effective yet comfortable while being grounded in science at the same time. The ToC was developed after thoughtful considerations by the patient experience team about how the intervention would work in the context [Figure 1].
The context was analyzed based on the team’s observation and experience for assumptions around different intervention components.
Delivery staff: The country has a handful of developmental paediatricians [26] with few training opportunities in residency programmes [27] suggesting the urgency of initiating intervention models with opportunities to refine iteratively during implementation. The limited supply of professionals qualified in ECD is reflective of the low demand from parents of young children to monitor development. Such non-medical services are not usually valued enough for families to pay additionally for them would be seen as burdensome by most families and would result in low uptake if a service were initiated in silo [28]. Developmental screening though important is not done routinely as not enough demand has been created. Hence, it is not seen as value by patients and physicians (who don’t see it generating revenue) [29]. Making this part of the regular clinic would mean identifying an additional cadre. The cadre was identified to be psychology trainees from a local university AKU had a memorandum of understanding with. This will give the paediatrician additional, important information that adds value to that clinic visit at no cost to the practice. The service can be then feasibly integrated by the paediatrician. The recommendations for follow-up for parents when reinforced by the paediatrician who are seen to be more trustworthy by families can enhance families’ trust in the process [30]. Thus, creating value around child development and may increase engagement and parental ownership.
Timing for administering developmental monitoring form: Paediatrician clinics are busy and add-on monitoring forms may be seen as burden affecting engagement with the intervention. However, there is long waiting between clinical assessment and the appointment which is a major main pain point for families [31]. When wait time cannot be reduced, some hospitals have utilized waiting times to encourage play [32], books [33] through volunteers for families of young children for a productive use of time and perceived reduction. A study in Jamaica in the waiting area in primary care implemented a video-based ECD intervention led by community health workers. The results showed benefits for parental knowledge and child development when compared to control [34]. Moreover, utilizing the wait time, the family experience of otherwise a cumbersome wait, can improve significantly. Patient and family experience is increasingly being recognized specifically within the private sector as a key strategy for enhancing patient satisfaction with the services resulting in buy-in from leadership [35].
Developmental monitoring tool: Given the intervention was meant to enhance parental role in children’s development it was important to ensure any child who could potentially benefit from just a conversation with the family was not missed. A tool was needed that was feasible to be completed by parents and for subsequent use by primary care providers. The Survey of Well-being of Young Children (SWYC) is a freely available, first level developmental-behavioral screening tool developed by researchers at The Floating Hospital for children under 5 ½ years of age at Tufts Medical Center [36]. The form is simple, provides a holistic screening across developmental domains, emotional- & behavioural adjustment and also the environmental factors emphasizing the role of the context.
The family support intervention: The psychosocial support intervention was based on principles of the Care for Child Development (CCD) module [37]. The module includes messages to enhance nurturing parent-child interaction using play activities. The first author was a certified trained for implementing the CCD module and had successfully led the intervention for in-patient children and families in collaboration with psychology trainees as the lead delivery staff [38].
The final delivery model included: 1) the developmental monitoring from and support recommendation [SWYC] to be completed 2) by the psychology trainees 3) during wait time 4) followed by integration in the routine paediatrician follow-up, capitalizing on the rapport and relationship between parent and physician while leveraging the on-going patient and family-centric initiative in the service line [Table 1].
Table 1
Outcomes, assumptions, need assessment and interventions of the ToC model
Domain
|
Outcome
|
Assumptions
|
Needs assessment
|
Intervention
|
Reach & reaction:
Will the intervention delivered reach the intended target
groups with the right reaction?
|
Eligible children are reached
|
Families of young children can be reached through trained staff.
There is a demand for monitoring services to promote children’s development.
Families and paediatricians will accept the intervention
|
Paediatricians won't have enough time in the clinic for developmental monitoring form administration. However, if the initial assessment is supported by another cadre, paediatricians can guide the families. The additional cadre needs to have time and relevant experience but cannot burden the existing staff.
The country has a handful of developmental paediatricians with limited training opportunities in residency programmes. The limited supply of professionals qualified in ECD is reflective of the low demand from parents of young children to monitor development. Hence, service in silos for developmental advice will not result in significant uptake. The paediatricians would not be invested in spending additional time or training effort on developmental consultation without due reimbursement.
There has been significant value creation for psychosocial needs during the ‘The Patient and Family-Centric Initiative’ for buy-in from physicians. Psychology clinic experience indicates families welcome discussion of emotional behaviour problems and greater acceptance when reinforced by the paediatrician.
|
Partner with a psychology university and use psychology trainees. Provide training and clinical supervision.
A form which provides greater false positives is preferable as no potential child and family in need is missed for a conversation about promotion of nurturing care.
Utilize wait time for monitoring which is already a pain for the families. When wait times cannot be reduced, opportunities of utilizing it meaningfully to add value to overall experience can engage families. The service has to be free of cost to begin with. Personnel costs for psychology trainees can be reduced through training, clinical supervision and credit for internship hours to administer the form. However, has to be reinforced by the paediatrician capitalizing the trust and relationship. For the paediatricians it will be a value-add as they provided additional messaging on health functioning of the patient within the same fee.
Leverage the already in place ‘The Patient and Family-Centric Initiative’ which values nurturing experiences as one of the core processes of care. Moreover, it is also now being recognized in the system that ECD is a long-term health outcome.
|
Capacity change
Will the interventions delivered and
their reach lead to the intended capacity changes?
|
Mothers acquire new capacity about nurturing care practices
|
The advice will be understood and mothers will comply.
Mothers have the capability to seek new knowledge.
Mothers are motivated to improve the development of children
|
Approach has to be simple with focus on milestones and also the environment. Pediatricians at AKUH are trusted as it is considered an elite hospital in the city.
Families are generally from the middle class and educated.
The schools heavily emphasize cognitive skills for entry which is a factor that can be heavily leveraged for engagement.
|
Use a simple checklist created for monitoring in the OPD with a focus on the role of environment.
-
Reinforcement from the paediatrician is needed with focus on long-term achievement in school.
|
Behaviour change
Will the capacity
change lead to the intended Behaviour Changes?
|
Parents specifically mothers adopt new practices
|
Mothers can make decisions about their child.
Parents can observe improvement in child’s development
|
Generally, fathers have a greater role in decision-making.
Generally parents lack knowledge of developmental milestones.
|
Paediatricians reinforce both parents for uptake.
Psychology trainees can provide guidance to parents for relevant websites or other sources for monitoring their children’s development.
|
Direct benefits
Will the behaviour
changes lead to the intended Direct Benefits?
|
Children have greater opportunities to engage in play activities and interact meaningfully with parents
|
Recommendations are mutually enjoyable and easy to implement.
Families can afford play materials.
|
General parenting style is authoritative and less focused on nurturing interactions.
Families come from the middle class and generally have access to toys and gadgets.
|
The recommendation should be based on enhancing interactions between parent and child which can be inherently rewarding.
Guide parents sensible use of toys but also gadgets- which have become a part of families’ lives.
|
Development changes
Will the direct benefits
lead to the intended Well-being Changes?
|
Child’s developmental outcomes improve
|
Children have access to healthcare
Appropriate referral pathways exist for children in greater need
|
Reinforce completing scheduled well-baby visits.
-
|
Include monitoring in every visit.
Establish liaison with the developmental paeds department
|
Note: The ToC was based on principles presented by Mayne J. Theory of change analysis: Building robust theories of change. Canadian Journal of Program Evaluation. 2017 Dec 4;32(2). https://doi.org/10.3138/cjpe.31122 |
Intervention Procedure
The developmental monitoring component was administered by four psychology trainees: two research associates (psychology graduates) having significant experience with assessment of children with developmental disabilities and two student trainees. Each student trainee was paired with an associate for quality assurance. As part of the procedure, the family was guided to see the trainee once the clinical assessment was completed by the nursing staff. The SWYC was completed during wait time. When a parent used to meet the trainee, language was chosen based on the family's preference, and trainees asked parents if they would like to fill the survey themselves or with the support of the trainee as an interviewer reading out the questions and tracking their responses for the parents. The raw scores on SWYC were calculated for developmental milestones checklist covering cognitive, motor & language domains, emotional & behavioural symptoms items and family stress. The scores were then classified as ‘Appears to be meeting expectations’ or ‘Needs review’ based on the SWYC guidelines. This description was entered on a summary form attached to the patient file to be seen by the paediatrician. Based on the SWYC summary form, the paediatrician provided advice and recommended referral if needed. About 15% of the forms were re-evaluated by the first author with the families. Feedback was thereafter given to the trainees for any clarification or elaboration.
Data Collection
Data from the parents was collected through a feedback form administered after the SWYC by the trainee. The parental feedback form comprised of 6 questions, of which 2 were open-ended (“How did you feel before filling the form and after completing the [monitoring] session?” and “What did you like best about this mini-session?”) and 4 close-ended questions (“Do you think understanding your child’s developmental progress and emotional needs is required?”, “Would you like to discuss the results of this form with your child’s paediatrician?”, “Would you like further information on ways to stimulate your child, such as a brochure with guidelines for activities for various age groups?” and “Have you ever visited a neurologist or psychologist before?” The trainees were requested to share their reflections as a qualitative narrative shedding light on their experiences and specific barriers and enablers. Physician feedback was obtained on email in response to findings shared with them about the developmental status of their patient population part of the study. The email was shared at two time points in the study: when one third of the sample was interviewed and when the study sample was completed. The data collection continued till the patient and family-centric initiative wad in place.
Data Analysis
The responses on the SWYC were scored based on the cut-off available with the form. Frequency and percentages were calculated for children indicated positive for further review by the paediatrician. Feasibility was evaluated for acceptability and implementation using the Bowen et al. (2009) framework [39]. Data was analyzed in SPSS V22.0 for cross-sectional descriptive statistics. Qualitative feedback from parental experience, physicians and trainee reflections were analyzed using thematic analysis for an understanding of their experience from their perspective. The analysis team included the ECD specialist and a developmental psychologist-who was independent of implementation. An inductive approach was employed for analyses following the standard procedures [40]. The responses were coded independently by the two team members for the qualitative data and then finalized in an agreement meeting. The codes were then broadly reduced under two aspects of feasibility: acceptability and implementation.