Feasibility and the Utility of Therapeutic Play in Children with Nephrotic Syndrome in a Hospital Setting in India: An Exploratory Study

Introduction

Chronic illnesses such as asthma, diabetes, cancer, juvenile arthritis, epilepsy, sickle cell anemia, and kidney diseases affect many aspects of the lives of children and can continue to do so as they grow into adulthood. These children experience more psychological problems than healthy children without physical illness. Although there has been an advancement in medical treatment lowering the rates of mortality, the healthcare needs of children and families have increased.^1,2

Nephrotic Syndrome (NS) is a common kidney disease affecting children from infancy to adolescence. Children with NS are often treated with steroid medications. Long-term use of steroids often leads to behavioral and emotional problems. Children may also develop complications such as infections and oedema, constantly needing hospital admission. Like any other pediatric medical condition, the treatment process in NS can be overwhelming. Children must take medication regularly, make repeated hospital visits, particularly during relapse and infections, and follow up with the medical team whenever required for medical procedures, which also leads to disruptions in daily lives. All these can impact a child’s psychosocial well-being.³

Working through the hospital experiences depends on the child’s age and social skills, which can be achieved in many ways. Play therapy is one such avenue and has been recognized across cultures and contexts and in various forms. Play therapy encourages children to work within their most natural and normal communication styles and therefore is beneficial in treating a range of issues.⁴ Play therapy has helped children cope with hospital admission⁵ and facilitated appropriate communication channels between the child, the family and relevant healthcare professionals.⁶ It not only creates an environment where there is a reduction in stress and anxiety,⁷ but also helps children cope with their diagnosis, manage pain during procedures and navigate treatment and regain control of their situation, contributing to improved psychosocial adjustment during illness and hospitalization. Play can assist and hasten recovery and provide children with a safe outlet to express their fears and fantasies.⁹

Studies have indicated the need for psychological care in children with chronic kidney disease. However, there are very few studies concerning psychosocial intervention in this population.¹⁰ When children are hospitalized, they undergo various treatment procedures, experience apprehension, fear, and separation from their families, and there is always uncertainty about the future. The advantage of play therapy in a hospital setting is that it creates a safe space for children to work on unpleasant experiences, providing them with a much needed sense of personal control. To the authors’ knowledge, no psychological intervention study has been conducted on children with chronic kidney disease in India, particularly in nephrotic syndrome. Therefore, this study aims to see the practicality of therapeutic play and its benefits in children with nephrotic syndrome. In our study, we have used the terms play sessions, therapeutic play, and play therapy interchangeably as needed.

Materials and Method

Study design and sample

The study is a hospital-based psychological intervention conducted in a hospital setting in South India. Five children between 3 to 9 years of age diagnosed with Nephrotic Syndrome for at least 6 months duration were recruited from the inpatient care unit of the Pediatric Nephrology department. The exclusion criteria included children with global developmental delays or other medical, neurological, or psychiatric illnesses. Children who were medically unstable to participate in play sessions were excluded.

Tools

1. The socio-demographic and clinical details were collected using a semi-structured proforma developed for the study.

2. Strengths and Difficulties Questionnaire (SDQ):¹¹ It is a short behavioral screening questionnaire for children aged 3 to 16 years, comprising 25 items. This tool is used as part of clinical assessment to assess a child’s psychological well-being, evaluate treatment outcomes, and as a research tool. It has five subscales measuring emotional symptoms, conduct disorder, hyperactivity, peer problems, and pro-social behavior. Items are rated on a three-point scale ranging from 0 (not true) to 2 (certainly true). Combining the first four subscales gives a total difficulties score (ranging from 0-40), indicating psychosocial problems. The parent version of the SDQ was used for this study.

Procedure

This study was approved by the institution’s ethics review board. The data was collected between September to November 2021. Children were recruited after obtaining consent from the treating pediatric nephrologist. Written informed consent and assent were obtained from parents and children after explaining the nature of the study. The researcher focused on building rapport with each child in the first meeting. A brief evaluation was conducted with the primary caregiver, primarily mothers, regarding the child’s birth and developmental history. Next, the SDQ was administered to assess children’s psychological well-being. The timings for play sessions were arranged so that their medical procedures remained undisturbed. The researcher, who was the therapist, saw each child individually. Sessions were done bedside every day, and the number of play sessions depended on the days of the children’s stay in the ward. Hence, the sessions ranged from 2 to 6, lasting 20-30 minutes depending on the health condition of the children. Although initially, it was intended for children to receive 8-10 sessions of therapeutic play thrice a week, sessions had to be condensed due to the COVID-19 pandemic. Play materials and activities were based on non-directive play therapy requirements,12 and medically relevant toys were included. During the sessions, the principles of non-directive play therapy by Virginia Axline12 were followed. 1. Developing a warm, friendly therapeutic relationship with the child; 2. Accepting the child exactly as he is; 3. Establishing a therapeutic relationship that fosters permissiveness; 4. Recognizing and reflecting back on the child’s feelings; 5. Respecting the child’s ability to solve his problems; 6. The child leading the therapy and the therapist being non-directive; 7. Recognizing therapy as a gradual process; 8. Establishing limitations necessary to anchor the therapy to the world of reality.

All children cooperated during play sessions. Feedback was taken from each parent at the end of every play session. Therapy sessions were video-taped and transcribed.

Data analysis

Using qualitative thematic analysis, transcribed written descriptions of each child’s play sessions were analyzed based on Ryan and Edge’s (2012)13 framework. Clear and common play markers and behavior across sessions were identified for analysis.

Results

Play themes

Common indicators arising during play therapy sessions were:

Use of play objects and classification of play activities - Play with a particular set of toys persisted across sessions. Children’s play activity was classified as exploratory, imitation, art, sorting and aligning, and sensory activities.

Description of play activity - Child 1 started playing independently and initiated play activities from the second session onwards. The child started to play spontaneously. Child 2 often got distracted by people around her while playing but could resume her play activity. One time the session was interrupted as the child was hungry and wanted some snacks. The child continued to munch on food while she played. Child 3 played independently, and no inhibition of play activity was observed. Child 4 played on her own but appeared distracted by people. Child 5 initiated the play independently, and there was a flow in her play activity. She did not seem bothered by the noises and people around her. She was focused as she played.

Duration of time with a toy - Children spent at least 8-10 minutes at a stretch with toys they preferred. This could imply that the toy was holding the children’s attention and could be significant to their emotional state.

Children used different sets of toys to play out scenarios- The use of play objects and the style of representation of people were all realistic. For example, children mostly played with dolls, the kitchen, and medical objects. Children created scenarios reflecting their experiences through toy selection and play. It could also be an opportunity for them to solve or express their wishes for the future, resulting from their freedom of expression and safety while playing. For example, play activities primarily revolve around the home or doctor-patient topic. The children set up the kitchen, prepared food, and cleaned the dishes. Children took the role of a doctor and dolls as patients. They checked vitals, inserted needles, and cuddled dolls. Creativity using art material was seen in a child. For example, the child was focussed and emotionally involved in an attempt to draw and color.

Transition or termination - The termination of the sessions was different for all children. For example, for child 1, the first three sessions ended as the child was tired physically. However, the subsequent sessions ended with the child wanting to play more. In child 2, all four sessions came to an end naturally. Child 3 packed the toys on her own after she finished playing. Child 4 ended the sessions indirectly by fidgeting with toys and not playing. In child 5, play activities ended because the child did not feel the need to continue.

Emotional and behavioral components - The children’s overall demeanor indicated pleasurable interest. They showed interest throughout and across sessions and appeared cheerful and curious when different toys were introduced. There were no signs of aggressiveness, sadness, worry or fear. Two children expressed discomfort during the initial sessions due to their physical state; however, that did not stop them from playing. Child 1 talked with her caregivers (father and grandmother) regarding the physical uneasiness she experienced from wearing the vaporizer mask. Child 5 expressed pain due to the cannula in her right hand.

Behavior and interactions with the therapist - Children’s behavior and interactions with the therapists were similar throughout and across the sessions. Children made and maintained eye contact but did not actively engage the researcher in the play activities.

Parents feedback

Parents observed changes in children, such as being calm and looking forward to playing. Parents also believed that incorporating play when children were admitted would help them relax and keep them happy. Seeing their children having fun at the hospital comforted the parents as well. Overall, play sessions were appreciated by parents.

Discussion

Hospitalization is a significant life event in childhood. This study aimed to see the feasibility of therapeutic play in inpatient children with nephrotic syndrome and whether they would benefit from it. The key finding in this study was that the children began playing spontaneously. They used play materials meaningfully, which may have given them a sense of normalcy, and there is evidence of the impact of play on hospital children.^14,15 Children in the study indicated pleasurable interest across sessions and appeared cheerful and curious when different toys were introduced. There were no signs of anger, sadness, worry, or fear while playing, although they would get exhausted quickly after playing for some time. Even in times of physical discomfort, children continued to play. The researcher provided children with complete acceptance and understanding of their emotions in the play sessions. There were no attempts made to fix things.

The duration of time spent playing and engaging in particular toys and similar play activities, e.g., medical-related toys, dolls, and kitchen items, could indicate that children were processing an event. In our study, children expressed emotions freely, mostly about their health conditions and families caring for them. Thus, play sessions provided children with an opportunity to experience control of their environment. Studies indicated that children process emotions and develop adaptive skills while playing, distracting them from pain and improving their mood.^16,17 In addition, the play offers children a way to slowly integrate the anxiety they are experiencing.⁸

Our study showed that children preferred specific toys because they were an essential part of their life or they were fascinated with them. Drawing or painting is also a way of expressing one’s psychological, interpersonal, and cognitive aspects. Either way, it kept them distracted from stress and better adjusted while being admitted. It could also be an opportunity for them to unravel their current condition or express their needs for the future, resulting from their freedom of expression and safety while playing and taking control of the stressful experiences. Piaget (1962)¹⁸ theorized that play allows children to replicate and resolute real-life struggles and amend unwanted feelings. When encountering stress, for instance, in the hospital, through play activities, children are able to refine their problem-solving abilities and have better control over their lives.¹⁹

In the study, play sessions also came to an end naturally. Children were either tired physically, reached a saturation point, or did not feel the need to continue. For one child, sessions ended with the child wanting to play more. Another child engaged in drawing and coloring after each play session. Perhaps that was her way of indicating the end of the play session. Children also voluntarily packed the toys in almost all sessions without the researcher saying anything. This could mean safeguarding the toys with the researcher or symbolically protecting oneself. Thus, in the study, termination with a specific play or toy could be a sign of progression in treatment.

Play sessions in hospital settings often occur in the outpatient clinic or at the bedside as inpatient care, as opposed to the traditional playroom. Our study conducted all sessions at the bedside since children were undergoing active medical procedures and also because there was no playroom in the ward. Play materials were also selected to encourage the expression of emotions and explore real-life experiences without verbalizing, keeping in mind the unique needs of the pediatric setting.

Children would make eye contact with the researcher and smile. They would show toys they wanted if they were out of reach, indicating that the children were aware of the researcher’s presence but did not engage actively with the therapist. Thus, children were primarily involved in solitary play. It could be that children were focused on handling the undergoing hospital stress and may not have had adequate energy to intermingle. This finding is similar to a study on children with leukaemia, indicating that young children engaged in solitary play when stressed and upset. In contrast, they engaged in group and parallel play when less stressed.⁸ It is also possible that the children were temperamentally slow to warm up. Studies have shown that temperamental traits such as shyness and strong reactivity can deter social play.^20,21 Hence, the therapist allowed each child to play independently without compelling them. Play offers a tangible social reality to improve oneself, and it is of vital importance to observe and listen to a child at play.^22,23 Additionally, in our study, the native language of the children differed from the therapist’s; hence, this also may have a subtle contribution to children not actively engaging the researcher in the sessions. Nevertheless, all children could express their views and experiences through play.

Since all sessions were conducted bedside, certain things could not be disregarded entirely. In our study, children probably desired an emotional connection with the researcher, but physically could not remain actively engaged. Thus, it becomes vital that the child’s emotional needs are met without compromising on medical management. Hospitals and treating teams had their working hours. Sometimes, the researcher had to wait as the child was asleep or too tired to play. Other times, the sessions were interrupted mid-way due to medical procedures or other interventions. Thus, our study conducted play sessions only when children were not occupied with medical procedures. Often, parents and caregivers wished to remain with the child. Nurses walked into the room to attend to other children, and it was observed that family members of other children who shared the same room were interested in what was happening. Thus, children sometimes experienced moments of distractions, although they were quick to focus back on the given tasks. In such cases, constrained play and interference in the play process cannot be ignored, and there is also a chance of compromised confidentiality with unfamiliar people around. Similar challenges have also been documented in the literature.^24,25 Facilitating appropriate communication with families and health care personnel explaining the need for a child’s privacy when needed, becomes vital.²⁶ On the contrary, parents and caregivers may gain a different perspective from watching their children play in the hospital and understand their needs and experiences.

While doing bedside play sessions, an immunocompromised child may be on safety measures and, therefore, require the therapist to wear a mask, gloves, and even a gown in certain situations to reduce the risk of infection.²⁷ In the study, assuring the children that the researcher was not involved in medical procedures was essential because the treating team appeared similar to children; hence, the researcher was conscious of the nonverbal cues behind the mask, such as facial expressions, eye contact, and genuine connectedness. It is essential to consider that illness and hospitalization are ongoing threats, and children may not learn to master them through play in a few days, and it is also possible that any uneasiness may bring about a decline in psychological well-being.

In our study, parents gave positive feedback about the therapeutic play as it contributed to children’s happiness during their short hospital stay, ultimately comforting the parents. Additionally, parents developed an awareness of the importance of the psychological well-being of their children. By incorporating play, they were enlightened about the value of non-pharmacological interventions, as physical aspects and medical care are often prioritized. A similar finding was also reported in a study where play intervention helped develop awareness and promoted satisfaction in parents while preparing children for surgery.²⁸

Thus, based on the study findings, therapeutic play intervention in a hospital setting was possible despite its unique challenges.

Implications

In India, interventions such as play are seldom used in the hospital setting, and there is a need to recognize its value in children with health conditions.

This study explains the importance of play for young, hospitalized children. First, play offers the time and opportunity to accommodate and assimilate the various experiences around them, allowing them to come to terms at their own pace; in that way, children relax because they find comfort in familiar toys and activities. Even simple resources such as dolls, teddy bears, storybooks, medical toys, and art materials can help prepare a child to develop acceptance and coping skills. Play also helps overcome language barriers and establish cooperation. Second, it allows physical, emotional, social, and intellectual development to continue normally, even when hospitalized. Third, given the importance of play to children’s psychological health, there is a need for spaces and facilities across different pediatric wards so that children can interact consistently with one person who provides a non-judgmental atmosphere.

Additionally, it is vital to have pediatric psychosocial care practitioners trained in play therapy and be a part of the multidisciplinary team to cater to children’s and families needs and improve health care. Pediatric nurses are constantly in touch with children and parents during their apprehensive hospital stay. Thus, while working with children, play becomes an important tool to help alleviate fears and ensure clear communication and assessment. Liaising with a psychosocial care practitioner who does play work during working hours can provide an opportunity to share ideas and enhance the care provided to children and their parents. Paediatric nurses must develop the skill and engage in intervention delivery independently because play is a resource that must always be available, especially in settings where resources are low. Academic programmes and conducting workshops on play and play therapy can benefit undergraduate nurses in developing their skills and also promote the use of play in the hospital.²⁹ Thus, play can benefit children, parents and health providers in a hospital setting.

Limitations

There are some limitations in this study. The first one involves the sample size and gender bias of the participants. Our study’s small sample size included only one gender, limiting the findings’ generalizability. A larger sample size with an equal number of both genders would have given a better picture. In addition, including healthy children in the study and comparing their preferences for toys, play behaviours, and experiences could give an interesting perspective.

Another possible limitation was the number of play sessions. Typically, 15-20 sessions are recommended (spread across 6-8 weeks) to see notable changes that can be measured.³⁰ However, in our study, play sessions differed for all five children despite being seen daily. The reason was that children were sent home within a few days of admission once their illness symptoms were managed. Considering their compromised immune system, keeping them in the hospital for an extended period of time was not a viable option, particularly during the pandemic. It is important to consider that the speed at which children improve can vary depending on the severity of their illness. Mild problems may improve faster, while more severe issues like illness-related trauma may take longer to resolve. Thus, the number and duration of therapeutic play sessions for children should be tailored to each child’s specific needs.

Only pre-assessment was done due to the differences in the number of play sessions and the short duration of hospital stay. Although feedback was taken from the parents, a post-assessment could have been a better measurement to see if all changes had occurred. In such cases, psychological assessment can be planned post-discharge during the subsequent follow-up. Alternatively, a possible solution can be to take feedback from multiple informants, such as parents, nurses, or treating doctors, to determine if any positive psychological changes have been observed.

Conclusion

This paper aimed to sensitize the importance of therapeutic play for children with health conditions relevant to Indian context. Despite various challenges for using therapeutic play in a hospital setting (particularly for hospitalized children), play can be utilized and incorporated to address the unique needs of the child while keeping in mind the developmental level and psychosocial vulnerabilities as it helps children and families understand the illness and treatment processes, decreasing physical and emotional distress and possibly reducing the cost of care. Some modifications must be made to make play therapy relevant and valuable in a medical setting. However, play being a natural medium for children, is something that can be incorporated into routine care to improve both short and even long-term outcomes.

Conflicts of Interest

Nil

Acknowledgments

We appreciate Dr. Priya Pais’s insight and guidance while working with Nephrotic Syndrome children throughout the study period. This work was a part of the doctoral research of the first author, supported by the University Grants CommissionJunior Research Fellowship under Grant 333/ (NET-JAN 2017).