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Patient Experience Case Study - Aga Khan University Hospital
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See the opportunities and challenges organizations face in addressing the patient experience.

Case Studies provide real stories of current efforts, including programs being initiated, practices being implemented, and outcomes being targeted and/or achieved. Case studies are presented as both an opportunity for learning from others as well as a spark for further ideas on how we work to improve the patient experience.

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When I Play, We Heal

What was the opportunity, issue or challenge you were trying to address and in what setting?

The Children’s Hospital of Aga Khan University (AKU) was going through a transformative phase related to employee engagement using quality improvement projects driven by the employees. The transformative phase gave opportunity to introduce play therapy for pediatrics’ inpatients and their families.

A baseline data was collected in the hospital to evaluate the emotions that in-patient pediatric patients and their parents go through along with their skills of responsive parenting. It was found out that approximately 37.4% of the children were in physical pain, 58.9% of the children cry some of the time and 50.8% of the children were demanding most of the time. Negative reinforcement by parents was found to be 87.8% and maternal caregiver involvement such as storytelling was found to be 27.1% but those of fathers 40.7%.

The above stressors were demarcated by the following:

  • Lack of identity: nurse-object dyad rather than nurse-patient (Livesley & Long, 2013).
  • Lack of empathy and unconditional positive regard (Stremler, Haddad, Pullenayegum, & Parshuram, 2017; Hopia, Tomlinson, Paavilainen, & Astedt-Kurki, 2005).
  • Lack of communication: lack of reciprocal communication between parents, children and hospital staff regarding medical procedures, concerns and uncertainty which then increased the stress of parents and children (Ramsdell, Morrison, Kassam-Adams, & Marsac, 2016; Wilson, Megel, Enenbach, & Carlson, 2010).

What process did you use to develop a solution?

The solution was developed using the method of theory of change (TOC) in a team-based solution generated in meetings. The team comprised of one senior instructor, one research specialist and one senior research assistant. The baseline data was collected in the first quarter of 2017 after which the TOC was developed in March 2018. The TOC included developing a systems of services which then paved way to the evidence to test the TOC which then assessed the intermediate outcomes and the final goal which was patient satisfaction.

The plan was then presented and approval was sought from the leadership of Children’s Hospital and other faculty members and nursing staff.

What outcomes were you looking to achieve?

  • To reduce the fear and anxiety in parents and children induced by invasive medical procedures.
  • To reduce regression in children (crying, becoming clingy, needing constant parental supervision, acting out) and repression of fear, anxiety and desires through play. 
  • To create a continuity of everyday life through play inducing games that includes cognitive and psychosocial skills and physical development.
  • To teach children different emotions, coping strategies and problem solving.
  • To impart skills on parents that they can take home.
  • To increase the interaction between parents and children.

What specific steps did you take to address the problem?

The following steps were taken:

  • A play stimulation package was created in which the training layout is as follows:
    • physical development
    • psychosocial development and communication skills
    • emotional development
    • cognitive development
  • Each of the above mentioned skills were developed according to different age groups (newborn to six years old).
  • Interventions were measured via behavioral observations. Checklists were created for family interaction, infant/child behavior and mental status examination of the child.
  • Approximate duration of session includes 30 minutes to 50 minutes in which the therapist encouraged the parents to emotionally engage with their child.
  • Recommendations were also given to the parents that were also shared with the nurses, residents and consultant who at times reinforced the behavior.
  • Another training package was created to train the nurses as well as play therapists who will be hired in 2019.

What resources, if any, did you engage – either internally or externally – to address the problem?

Internal resources:

  • Director Patient Experience of Care, a clinical psychologist and implementation scientist and faculty at the Aga Khan University: Head and lead of the play therapy intervention programme.
    • Formative Evaluation: Conceptualized the formative evaluation of patient and parent experience admitted in the wards about their experience including stressors and child behaviour and parent practices during hospitalization.
    • Theory of Change: Designed the framework of the intervention programme and the theory of change model of how intervention processes will bring about the desired outcome i.e. how parental responsive care will improve paediatric patients’ experience.
    • Memorandum of Understanding (MOU): Led the MOU with local psychology universities for their students to intern in the service line and work with in-patients as part of their course requirement of observation hours.
    • Mentoring an Associate Psychologist: Hired and mentored an associated psychologist to develop the package, create process evaluation tools according to the designed TOC and lead the intervention on the floor with the interns.
    • Making a case: Convinced the service line leadership for initiating the intervention programme to cater to the emotional needs of admitted child and their families.
    • Continuous quality improvement: Oversaw the ongoing data and analysis to feedback into the programme.
    • Dissemination: Mentoring interns and staff to disseminate the programme at various platforms.

  • Associate clinical psychologist:
    • Supervision and mentoring: she supervised and mentored the interns who were enrolled in a clinical psychology master’s program in a local university and volunteers by training them about core conditions of psychotherapy, role play, videos and different facets of play therapy and case study discussions.
    • Interventions: she gave sessions to families on bedside and used interventions from the play therapy package. Group therapy session were also commenced.
    • Analysis of behavior: after the intervention she analyzed the behavior through the behavior modification checklists for individual families and infant/child. She also assessed the mental status examination of the children.
  • Infection control team: standard operating procedure for infection control.
  • Out-patient: follow-ups in clinic.

External resources:

  • Volunteers: students from different universities assisted the associate clinical psychologist with therapy and infection control.
  • Interns: students who were enrolled in an ongoing clinical psychology master’s program. They took individual sessions on bedside and evaluated the behavior of families and infants/children. They were under the supervision of associate clinical psychologist.

What measures did you establish to determine the success of this effort

After every session, behavior of families and children was assessed. The following assessments were conducted:

  • Mental Status Examination: mood, affect, receptive and expressive communication skills, attention, behaviour with caregiver and therapist, self-esteem, theme of play and transition out of session.
  • Individual Family Behaviour Checklist: parental positive affect and sensitivity, parental negative affect and rejection, parental behavioural atonement with child, language, psychosocial and parental stress.
  • Infant/Child Behaviour Checklist: behavioural atonement, language/psychosocial skills, positive affect and negative affect.

What was the ultimate outcome of your effort?

In all 195 sessions were conducted with families from March 2018 till December 2018. The following figures give the analysis of the different feelings experienced by children, their mood when the session ends and their relationship with their caregivers.


Figure 1: Descriptive statistics of mood before intervention and after intervention


Figure 2: Descriptive statistics for transition out of session

Figure 3: Descriptive statistics for interaction with caregiver

Responses on behavioral observation forms of family and children are currently being analyzed.

What lessons did you learn you would share with others as they consider addressing a similar issue?

Active listening, unconditional positive regard, empathy and genuineness of a consultant or staff member with the child and her family members make them feel comfortable. They feel less stressed out as they believe that they will be heard. It also gives parents and children a platform to openly speak about their emotional problems. It creates assertiveness in them.

Play gives children a space to enact the trauma that they are suffering from. They gain confidence when people accept them the way they are and empathize with them. Generally, children in ward tend to empathize with each other so do their parents.

It is important to create a partnership with different organizations as it paves way for resource mobilization. It enables others to learn and experience. Institutional partnership is one of UN’s sustainable development goals (UN, n.d.).

The intervention also supports one of the Human Rights Council’s 2016’s resolution towards human rights and mental health which states that “active steps should be taken to integrate a human rights perspective into mental health and community perspectives, particularly with a view to eliminating all forms of violence and discrimination within that context and to promote the right of everyone to full inclusion and effective participation in society,” (UN, 2016).

Sustainability should be maintained via reinforcement of acceptable behavior of families by the consultant and trainee physicians. The staff that is engaging in play should be assessed from time to time and behavior of in-patient families should also be assessed. The play therapy package should be modified on an annual basis.

Data should be collected using the method of between-group design which takes into account different diseases and length of stay in order to decipher if the program is beneficial or not. Data related to the physiological changes such as pulse rate, respiration rate and blood pressure before and after session should be taken into account.

We have managed to do a few group sessions in which we found out that people from different communities unite and openly speak about their problems. Children and their caregivers tend to interact with people from different ethnic backgrounds. This creates social cohesion.

View the Play Simulation Theory of Change

About Aga Khan University Hospital

Aga Khan University Hospital (AKUH) is a private, not-for-profit organization. It was established in 1985. It constitutes of school of nursing and midwifery as well as a medical college. The organization has in all 13 service lines that cater to different elements of healthcare. One of the service lines is Children’s Hospital that provides in-patient and out-patient tertiary level health services to children between the age ranges of newborn to 18 years and adults with congenital heart disease.

Patients in Children’s Hospital come from different localities of Pakistan as well as Afghanistan. The organization provides services to people from all walks of life and has a robust welfare system to support those who cannot afford care.

The team of this service line believes in the multidisciplinary medical approach to address the needs of children and their families. Children’s hospital has a well versed team of practitioners who range from primary pediatrics to complex medical and surgical sub-specialists. The hospital also offers psychotherapeutic services to in-patients and out-patients. The service line believes in patient centricity.

Case Study Authored by:
Vardah Bharuchi, Instructor, Aga Khan University Hospital

References:

Hopia, H., Tomlinson, P. S., Paavilainen, E., & Astedt-Kurki, P. (2005). Child in hospital: family experiences and expectations of how nurses can promote family health. Journal of Child Nursing, 14, 212-222.

Livesley, J., & Long, T. (2013). Children’s experiences as hospital in-patients: Voice, competence and work. Messages for nursing from a critical ethnographic study. International Journal of Nursing Studies, 30, 1292–1303.

Ramsdell, K. D., Morrison, M., Kassam-Adams, N., & Marsac, M. L. (2016). A Qualitative Analysis of Children's Emotional Reactions during Hospitalization following Injury. Journal of Trauma Nursing, 23(4), 194-201.

Stremler, R., Haddad, S., Pullenayegum, E., & Parshuram, C. (2017). Psychological Outcomes in Parents of Critically Ill Hospitalized Children. Journal of Pediatric Nursing, 34, 36-43.

UN. (n.d.). Sustainable Developmental Goals. Retrieved from Sustainable Developmental Goals Developmental Platform: https://sustainabledevelopment.un.org/?menu=1300

UN. (2016, June 29). Mental Health and Human Rights. Retrieved from Lisbon Institute of Global Mental Health: https://www.lisboninstitutegmh.org/assets/files/HRC%2032%20-%20Mental%20Health%20and%20Human%20Rights%20-%20adopted%20-%2001.07.2016-20160701141220.pdf

Wilson, M. E., Megel, M. E., Enenbach, L., & Carlson, K. L. (2010, March/April). The Voices of Children:Stories About Hospitalisation. National Association of Paediatric Nurse Practitioners, pp. 95-102.

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