The case study was done on a patient named Andrea Delgado, who is fourteen years old. She was admitted to the PICU hospital as she was suffering from glycogen storage disease type 1B. The disease was associated with lactic acidosis, hypoglycemia, and emesis (Chou et al., 2021). According to her mother’s observation, the patient has been experiencing reduced oral intake for the last month. This was because of discomfort and abnormal bloating. At the age of eight months, the patient was diagnosed with GSD. After her eight-month diagnosis, she has also been admitted to hospitals four times due to the disease, with hypoglycemia (low level of blood glucose) and emesis (vomiting). She also has a special diet at home. Thus, she does not eat dairy products, such as glucose and fructose. Her mother refers to the patient that she received neutropenia because the patient has a complex chronic medical experience history that requires vital monitoring. With complex medical histories, patients normally require frequent interventions and assessments for neurological and respiratory supportive health care.
Developmental Strengths and Psychosocial Needs
Since 2005, the patient has been suffering from type 1B glycogen-storage disease, hypoglycemia, gastritis, and emesis. Despite the frequent illness of the patient, she was in grade seven at school. Her frequent absenteeism in school due to her illness has led to a drop in her performance, but the patient’s mother believes that her daughter will catch up with others when the patient recovers and passes her final exam. She is studying psychology in Peru with the disease and uses Spanish as a primary language. The patient normally prefers a battleship board game and a personal phone. The patient lives with her father, mother, and siblings. The patient’s strengths are seen as she likes playing and working independently. She is also creative and curious about everything she does. She always asks for assistance when she needs it. She has hobbies and passions and always follows the routines and rules of the institution or place well. The patient can express her ideas, wants, and needs orally without a problem. She also uses expression and inflection when speaking. She likes listening to music, stories, and other activities. She can also answer what, when, who, and where questions in conversations.
Hospital Adjustment and Emotional Responses
The patient is always engaged and very active in socialization. She consistently enjoys craft and art projects to be completed at the bedside, or she travels to the playroom to work on those projects. She is approachable and also looks for the appointment when she arrives in the room. She struggles with the transition because of her diagnosis, which affects her mental status. Changing rooms and units is seen as a challenge in transitioning to a new environment with new staff. However, she occasionally suffers from severe headaches, and she experiences headache precautions. At this moment, it’s significant to minimize sensory stimulation by dimming the lights, encouraging limited disruptions, and limiting noise. When the patient is not experiencing headache precautions, she also doesn’t experience sensory sensitivity. The mood of the patient fluctuates daily. The patient’s mood fluctuates due to her symptoms and interactions with the healthcare staff. I have seen her respond in interactions with both intense verbal and calm responses. In the interaction, she is interested in topics that interest her and also those that touch on her medical plan for care. The patient always exercises intensive attention in the conversation about future goals or working to complete daily activities.
However, the patient can speak about her recent medical status and verbalize plans regarding her care directly. She is fully knowledgeable about her plan of care and medical history and seeks regular involvement. She was included in the professional meeting to assist in determining the proper way of treatment. As stated initially, the patient has been on the medical support system according to her past admission records from different hospitals. During hospitalization, the patient got family support from her parents and her brothers and sisters. As her condition was worsening while she was at home, she decided to travel to Miami Hospital to get the best health care possible. She coped quickly in a hospital setting, which assisted her in recovering quickly from her critical condition. In my interaction with the patient about her health condition, she did not show any fear or anxiety about her health condition. She demonstrates impatience with the time taken by the medical staff. However, when the patient is anxious and fearful, she becomes quiet and makes improper comments.
Family Support and Child Life Interventions
Family members have not always been available during the patient’s hospitalizations throughout her illness. However, the stress of the family was discovered in the meeting with professionals in the Miami hospital, where the professionals questioned the ability of the patient to make her personal decision because of her mental status diagnosis. They proposed surgery that would heal her. The patient was encouraged by this proposal, and she decided to bring herself to Miami Children’s Hospital to get medical assistance. She hopes to get treated despite the surgery implications and believes she will be better. Child life is important in the hospital care team in giving the patient skills to develop independence upon eventual discharge. The specialist in the child life unit has been working with Delgado since the start of this case study. He has been working on the following areas: communication skills, hygiene, daily routines, and how to handle emotions. Specialists work to assist the patient in developing correct boundaries during interactions with family members, guests, and hospital care staff. As the patient stays in the health center, she receives continuous therapeutic intervention. This encourages the patient to have a list of past experiences and memories to be written down to promote healthcare organization. Also, the patient should set goals and objectives to achieve in the future after getting out of the hospital. The specialist will work based on the previous activities and experience of the patient to reinforce advanced cognitive thoughts, know how to redirect thoughts in the patient’s mind, keep to the daily routines, and be involved in social interaction correctly. To facilitate this, the specialist typically accompanies the patient to the hospital playroom to promote the creative expression of challenging feelings or thoughts and artwork. The patient always enjoys creating artwork for her care room, and she also promotes territoriality in the hospital setting. She benefits from the consistency and structure of the hospital care plan. In giving the hand-off to other kid life specialists, I would emphasize the significance of the daily routine, health organization promotion, and the need for consistency.
Recommended Child Life Services
After investigation and interaction with the patient, the child life intern believes that the patient will benefit from child life services two to three times per week to give the following intervention (Association of Child Life Professionals [ACLP], n.d.-a):
- Give emotional support to the family.
- To continue psychosocial support to help the patients cope with fear, stress, and anxiety during the hospitalization.
- Give the patients therapeutic actions with the opportunities to enhance self-esteem and body image and express feeling independent.
- Help patients establish a communication strategy for effective communication with hospital staff and encourage decisions regarding the strategic plan to care for patients.
Date
The child life intern first met this patient during investigation week with the child life specialist on the neurology unit. The mannerisms and communication style were affected by the child life intern, who was investigated by the child life specialist. The specialist introduced the intern to the patient. The patient was surprised to learn that the intern spent time with her. Hospital staff always continue to follow patients at the moment of hospitalization.
May 02, 2017
Child life services are introduced to the patient and family members (patient’s father, mother, and relatives). The patient experiences developmental delay in speech. The patient felt sad due to her different appearance from others and had experienced repeated admissions to the hospital due to her illness. Specialist of the child’s life facilitates diagnostic symptoms or teaching or extended hospitalizations and the reason for their visit. The patient verbally expressed comprehension regarding repeated admission, and she feels sad because she appears different from others and has also experienced repeated hospitalization. Encouragement of active role in the treatment or care and emotional support for the patient and family.
May 03, 2017
The patient was sleeping at the time the specialist visited; the patient’s parents (father and mother), siblings, and relatives were present at the bedside. The mother orally explains the patient’s status and the change in prognosis. At that moment, the patient was actively vomiting. The specialist encourages an active patient role in treatment, education reinforcement, parental advocacy, and emotional support for the family. The childcare specialists will visit the patient again the following day. She is increasing her adjustment and coping skills, increasing involvement or compliance, and will reassess as the patient’s medical condition changes.
May 04, 2017
The nurse in charge of the patient informs the child life specialist and child life specialist intern that the patient is going to the PICC hospital under sedation. A relative of the patient waves and smiles at the specialist intern in the family break room.
May 05, 2017
The specialist intern gives a bedside therapeutic activity to the patient. They are actively associated with the patient and her mother in emotional masks. Because of the slow rise in temperament, the child life intern started the activity of a silly mask match game so that the patient could get the opportunity to identify the emotion. The specialist encourages the patient to show or point to the current mood. She shows that the current mood at the hospital is happy because she pointed at the visual aid emoji funny face. However, her mother explains her daughter’s condition to the specialist. At this moment, the child life intern established pain management and coping skills by illustrating how to squeeze the stress ball, play music, play handheld games, engage in conversation, use positive self-talk, and journal. The specialist encourages the patient to develop a mask that allows the patient to express herself and represent emotion.
At the time of patient care or treatment activity, the child life intern also used Google Translate to communicate with the mother and the patient. The intern gives psychosocial support, letting her know she is pretty and unique (ACLP, n.d.-a). After five days of admission to the hospital, the patient was actively associated with the child life intern, and she was laughing and smiling at the time of decoration. She was coping and adjusting effectively during that duration of hospitalization. After those five days, the patient was taken back home under new medications that were prescribed by GI.
May 6, 2017
The patient’s health is gradually improving, and she is feeling better. The patient is taken back home under new medication that was prescribed by GI. As they left the hospital, the patient and her mother smiled and waved their hands to the child life specialist and child life intern. They were encouraged not to worry as the patient was transferred to the new unit (ACLP, n.d.-b).
References
Association of Child Life Professionals. (n.d.-a). Child life competencies and standards. https://www.childlife.org/practice/child-life-competencies
Association of Child Life Professionals. (n.d.-b). Child Life Code of Ethics. https://www.childlife.org/certification/resources/code-of-ethics
Chou, J. Y., Jun, H. S., & Mansfield, B. C. (2021). Glycogen storage disease type I. In M. P. Adam et al. (Eds.), GeneReviews. University of Washington, Seattle. https://www.ncbi.nlm.nih.gov/books/NBK1312/
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