Parental feedback
Data of 223 participants who received intervention was analyzed for the study. Data about the demographic variables were examined except for gender and language spoken at home (Table 2). About a third of children were in the age group of birth to 1 year (31.8%), were slightly higher in number of females (56.95) and majority were from the acute illness group (72.2%). The median length of stay was 4 days. Out of a total score of 20 on the maternal knowledge survey, the mean score was quite low (4.3 ± 0.29).
Table 2
Socio-demographic characteristics of participants N = 223
Characteristic
|
N (%)
|
Age (Months)
|
|
0–12 months
|
71 (31.8)
|
13–24 months
|
60 (26.9)
|
25–36 months
|
34 (15.2)
|
37–60 months
|
58 (26.01)
|
Gender (N, %)
|
|
Male
|
127 (56.9)
|
Female
|
96 (43.05)
|
Disease group
|
|
Acute illnesses
|
161 (72.2)
|
Cardiology
|
13 (5.8)
|
Neurology
|
15 (6.7)
|
NICU
|
2 (0.9)
|
Surgery
|
30 (13.5)
|
Neonatology
|
0 (0)
|
Other
|
2 (0.9)
|
Length of stay (days, median)
|
4
|
Maternal Education
|
|
Primary
|
39 (17.5)
|
School
|
25 (11.2)
|
College
|
37 (16.6)
|
University or above
|
114 (51.1)
|
Missing
|
8 (3.59)
|
Maternal Knowledge (KAP)
|
4.3 ± 0.29
|
Language (N, %)
|
|
Urdu
|
128 (57.4)
|
Sindhi
|
32 (14.4)
|
Other
|
63 (28.3)
|
Residence
|
|
Within the city
|
154 (69.1)
|
Outside the city
|
69 (30.9)
|
Table 3 shows frequencies and percentages of parental stress due to child illness. Results indicate items marked as ‘extremely stressful’ by parents and ‘most of the time’ for children. Most negative emotions in parents stemmed from seeing their child in pain or distress (6–7%), as well as uncertainty about the child’s health in the future (10.6%) and the possibility of a relapse (14.5% marked as ‘extremely stressful’).
Table 3
Parental stress related to child illness and child expression of negative emotions
Stress perceived by parents
|
N (%)
|
The child appearance e.g. lethargic, weak or pale
|
6 (2.6)
|
Prolongation of hospitalization
|
9 (3.8)
|
The severity of disease
|
6 (2.6)
|
Child's inability to eat
|
24 (10.2)
|
Uncertainty about future of the child's medical condition
|
25 (10.6)
|
Fear of relapse
|
34 (14.5)
|
Child irritability and crying
|
17 (7.2)
|
Child's pain
|
14 (6)
|
Emotion/Behaviour experienced by the child
|
Rebellious
|
50 (21.3)
|
Crying
|
16 (6.8)
|
Demanding
|
42 (17.9)
|
Frightened
|
32 (13.6)
|
Anger
|
27 (11.5)
|
Restlessness
|
58 (24.7)
|
In pain
|
47 (20)
|
Sad
|
94 (40)
|
Confused
|
82 (34.9)
|
Inability to talk/cry
|
49 (20.9)
|
Note: Results are presented as N (%) for the ‘extremely stressful’ category for parents and ‘most of the time’ for children. |
About 45% of the parents (N = 94) reported play intervention as one of the three key factors that made their experience positive during the stay. Some parents reported that play helped to distract their child from the pain, helped the child calm down, while some suggested that play should be an integral part of paediatric care services. One parent (interview ID 44) reported “The play [activity] is effective. It was the only thing that made me feel good about my experience [in the hospital].”
Parent feedback collected by the trainees also showed similar trends. Though only 20% of the parents were captured due to time constraints at discharge, majority reported being satisfied with the intervention. 92% agreed/strongly agreed that they felt satisfied, that they were listened to and respected by the therapist, and that the therapist cared about their child’s well-being, 96% agreed to feeling comfortable talking to the therapist and felt relaxed after their session, 94% felt that their relationship with their child was strengthened, 85.5% agreed/strongly agreed that they were able to focus on their children as well thanks to the program (not applicable to 10% of participants with an only child).
Trainees feedback
Though designed initially only for local students pursuing a Master’s degree, the programme also attracted several students (of Pakistani origin) from international universities, and other undergraduate students with social sciences background. Out of 33 trainees, 9 were undergraduate level students, 24 were enrolled for their Master’s degree; 5 were international students. 1 of the trainees was male, 32 trainees were female.
Findings from analysis of trainees’ feedback (summarized in Fig. 2) indicated that they appreciated identifying new avenues in clinical psychology and realizing the importance of parental interaction, and the importance of their cooperation and willingness. As a trainee (October 2019) stated, “The work experience and exposure was remarkable; the supervision provided was incredibly supportive and helpful. Mistakes were highlighted, and weekly feedback was so beneficial. Initially, it was a bit challenging but over time, it became fun to work with different types of audience. Every client helped us to grow in their own way.”
They also reported that this was a “new, much-needed exposure” and that holistic care should be a part of every hospital in Pakistan (“The internship made me realize the need for child therapists and psychologists in the Pakistani medical system to provide holistic treatment that caters to the needs of both, the parents and the children”, trainee, July 2018). One of the trainees’ sister was admitted to the ward for 10 days during the internship. The trainee practiced play therapy techniques with her sister and reported that she could “vouch for the techniques…they enhanced my skills as a person and as a psychologist. The activities played a significant role in instilling hope in my sister, as well as improving the bond between us.”
Some of the success stories included feedback from the international students. They felt the principles of play-based interventions resonated with their work in the US and Canada – “I am now back in the USA. I will be working as a volunteer for play therapy at the Boston Children's Hospital. I am so impressed that this concept has been introduced at AKUH because I see that play and creative arts therapy is an important part of healing. As [an AKUH pediatrician] said, once the play therapists and psychologists go and talk to the patients, that’s when the medicine starts working.” (Trainee, September 2018).
The other international student trainee (May 2019) remarked, “Being born and raised in East Africa, and now living in Canada, even with a wide range of experiences in certain areas, I would have never found an opportunity such as this one anywhere else … [it] has opened my eyes to the path I want to take in the future … Being here and undergoing all the responsibilities has assured me that I truly enjoy helping others, and teaching/training medical practitioners in order to increase their depth of knowledge in a holistic manner. This way there is a larger population of individuals who are well versed in multiple areas including play therapy and can help more patients daily, compared to one or two of us who are currently working alone. Overall, it has definitely been an eye-opening and life-changing experience for which I will be eternally grateful.”
Suggestions for improving the programme included reducing the time duration of disinfection (“[better to] assign nurses or any other [lower level] staff who could be responsible for disinfecting the toys properly … thereby giving interns the time and opportunity to choose an activity or toy in accordance with the needs of the next patient”, trainee feedback, July 2018) and including a variety of toys to cater to the patient population from different parts of the country (“…increase the kinds of toys and interventions available, especially for kids older than 10 years. Adding picture books or simple story books, with languages like Sindhi, might also be beneficial” trainee feedback, December 2019).
Raising awareness was also emphasized upon and the role of all health providers for nurturing interaction with children. The students felt the success of the programme could be disseminated widely given potential benefits. A trainee (July 2018) suggested, “parents should be more involved in the activities, psychoeducation of parents should be the main focus. Staff (primarily nurses) should be trained in basic therapeutic techniques, helping them to create a positive bond with the patients, and supporting children when the therapist is not available. This will reduce patient and parent anxiety in the hospital.”
Physician feedback
Core themes of gratitude, patient support, improvement, detailed feedback and recommendations were identified from physician feedback. Most of the physicians who responded on email were thankful for the observation reports that were sent to them and were grateful for the continuous support. They also observed changes in children, such as decrease in anxiety, increase in curiosity and social interaction. Physicians also recommended that children and families would benefit from stimulation due to chronic conditions. Overall, the implementation of the program was appreciated by the consultants as well.
A paediatric oncologist appreciated that “It’s very encouraging to have this kind of service available in The Children’s Hospital”, while a gastroenterologist noted that the “explanations about the child’s psychosocial profile are really helpful”.
A cardiologist noted on the departmental Facebook group (April 2018): “… yesterday I gave a consult to [the psychologist] for 2 patients. One is a post-op cardiac patient who yesterday morning was quiet and not interactive. The parents were extremely worried about her change of personality. Today after just one session by [the psychologist] I could not recognize the child – interactive, playful, fearless. She kept pointing to this note by [the psychologist] (a teaching note for the parents) and telling her dad to follow the instructions! Thank you so much for starting the play therapy service in the Children’s Hospital.”
An oncologist (May 2018) responded to the above comment: “Agree 100% with this … seeing [the psychologists] interacting with our patient was heartening… play therapy project is much needed by the Children’s Hospital – seeing Child Life work so closely with oncology patients, I always felt this void here until now. Appreciate [the investigators] for creating this.”
Key feasibility findings
Recommendations for modification to the programme and the way forward are summarized in Table 4. Adjustments are primarily required for supporting children with additional needs (such as a frequent or long hospitalization, academic and other developmental delays).
Table 4
Key findings from feedback of parents, trainees, physicians
Domain
|
Key findings/Way forward
|
Randomization
|
Randomization can be done; one possibility is to examine play activities, with and without parental coaching stratified by disease groups as either acute or complex. A group with no intervention will not be possible as all children/families will be offered this service upon admission into the ward and withholding will be unethical.
|
Intervention implementation
|
Dedicated senior staff are required to oversee the execution of the programme and follow a formalized process of M&E as planned for quarterly meetings. Though started as a pilot service, the programme evolved very quickly and staff were stretched thin to incorporate regular feedback and changes.
|
Intervention content
|
No change is recommended for the content. One addition can be to encourage special education services for children with prolonged stay or repeated admissions.
|
Intervention mode
|
Individual bedside sessions are feasible, particularly compared to groups, due to space constraints and privacy concerns. Groups also enhance risk of infection.
|
Intervention delivery staff
|
Students, preferably with Master’s degrees are suitable for the intervention delivery. Undergraduates can be utilized but not as core delivery staff.
|
Intervention delivery forms
|
The content needs simplification and form length needs to be reduced. An additional form is required for quick screening of developmental and emotional issues to help trainees frame their intervention plan. The forms need to be co-designed with the key stakeholder who will use the data e.g. physicians for child health outcomes and university supervisors for academic outcomes of the trainees.
|
Engaging trainee students
|
Continue to share reports with university management. Make more efforts to engage university supervisors through in-person meetings. It is an important aspect to assure quality and professionalism by students while imparting a sense of accountability. Ideally, after every rotation so lessons learnt from one can be incorporated into the next rotation.
|
Engaging physicians
|
Individual reports are very time-consuming and feedback on emails may not always be received. Having in-person monthly meetings while sharing trends with physicians aggregated by disease groups can be more effective. Incorporate their feedback.
|
Continuation of services for children
|
Children with additional needs should be identified during the intervention and connected for out-patient follow-up.
|
Evaluation
|
Resources are needed for meeting families post-discharge and collecting their insights about the intervention. Meeting minutes with university supervisors and physicians can also add to the process evaluation of the intervention. A log of supervisor observations can be maintained covering their weekly in-depth meetings and rounds. To determine effectiveness, a trial is recommended.
|