Part I: Clinical Narrative
On one Sunday morning, as I checked into Holy Family Hospital, I found the doctor had assigned me a certain patient. As a pediatric, I often talk myself out of getting too emotional and carry myself professionally. Therefore, as I walked into my patient’s room, I had all intentions to let no one’s feelings get the best of me. Little did I know, this mentality was not going to work for me on this particular day. One glance at my patient brought all the emotions running through my heart and mine. The little girl who was my patient lay there helplessly and I could not help but think of my own daughter, as I am a mother. Naturally, no parent would want their child to go through pain especially in the first few years of their lives. The image I saw before me was therefore very saddening.
I gathered my thoughts together and asked the mother to give me an overview of the problem. Both parents were worried and saddened by the state of their little girl. The mother explained that the 6-year-old girl, whose name was Lola, had been born with problems with her esophagus and development delay. She had been brought to the hospital at 4 months for better treatment and later discharged. However, the parents noticed that Lola had taken longer to learn how to walk and started being concerned. Even after she started learning how to walk, Lola would fall several times, as if unable to master her balance. Now at 6 years, she was unable to walk at all and the reason behind it was unknown. Recently, Lola had been admitted due to her inability to walk as well as her troubles in swallowing food. All this while as the Lucy, Lola’s mother, was explaining this story to me, her face was filled with sorrow.
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The doctor came in at that point to explain to the parents what Lola was going through. He said that Lola had been diagnosed with a rare kind of disease that was deterring her muscles. However, the cause of the condition was yet to be known. The doctor also explained to the parents that they would have to start thinking about G-Tubes for feeding Lola as there was a possibility she would not be able to swallow food again. Another thing they had to come to accept was that their little girl would not walk ever again. The mother broke into tears and was later comforted by her husband. At this point, my emotions took the best of me and I left the room for the hallway, to go and cry privately. It was such a sad scene to look at.
Later I went back to the room to see how the parents were coping with the news. At first, silence filled the room, with only the low noise of the cry from Lucy. Thereafter, Angel, Lucy’s husband, started opening up about how it had been a difficult six years, and they could only imagine how worse the situation was about to become. He explained the challenges they has faced when they realized Little Lola was not improving on her walking and had even bought her a wheelchair. Their financial status did not make it any better. It was going to be a long journey for them onwards. The mother said a short prayer in Spanish to her sleeping daughter and went on to say she loved Lola very much. She could not believe Lola was not going to be like the other normal children. However, that did not mean she would not love her daughter anymore. According to her, everything happens for a reason and she was ready to do everything in her capability to make her daughter’s life better.
I tried to give them a word of encouragement saying all would be well. Yet, even I knew they had a difficult task ahead of them. I gave them the directions to the therapist’s office and said I would join them for a session later in the afternoon. After examining Lola and making sure she was comfortable, I left the parents with their daughter. A few hours later, I went back to check on Lola and found the mother still at her bedside. She still looked weary chanting her prayers away. Lola had opened her eyes but it was evident she did not know of her surroundings, neither of her situation. She looked at me, then back to her mother, as if to ask who I was. Her mother smiled at her, then at me. I informed them it was her feeding time, after which in inserted her feeding pipes. The mother looked in disbelief but said no word.
In the afternoon, after Lola had slept again, I walked the parents to the therapist’s office. There, the therapist explained that she and I would help the parents try and understand the condition of their daughter fully and how to cope with it before Lola was discharged. Since Lucy did not speak English fluently, Angel and I kept translating the conversation. After the session, Lucy’s expression was of hope. As she had mentioned, she was willing to do whatever it takes to ensure her daughter had a comfortable life. We went back to Lola’s room and found that she had woken up. This time, a smile cut across her face. She looked delighted to see her mother, oblivious of her situation. I sat down and greeted little Lola for the first time, then wrote a schedule for the mother on how the next couple of days would be.
During the week, I could not help but think of little Lola and her parents. Since I did not work on weekdays, I could not wait for Saturday to go and see their progress. I imagined how hard Lola was coping and how sad her parents were looking at her struggle. Her disease, Myopathy, was rare. This disease affects the muscles, causing the muscle fibers to not function properly. Though the cause of the disease is yet to be figured out, in most cases it is inherited. The symptoms of myopathy include stiffness, cramps and muscle weakness that leads to muscle break down. In most cases, this disease is detected in early infancy.
There are many types of myopathy such as Becker type myopathy whose symptoms include difficulty in chewing and walking. Another type is Eulenberg’s myopathy which is characterized by muscle stiffness around the neck, face and upper extremities. There is also Hyperkalemic Period Paralysis that causes episodes of weakness lasting between 15 minutes or the whole day. Hyperkalemic Periodic Paralysis may start to show in adulthood or childhood and is often characterized by general weakness at night or in the morning. Another type of myopathy is Centronuclear myopathy that is more apparent in boys, and just like the other case, it causes weakness in the muscles. Finally, there is Nemaline Myopathy that occurs at birth, childhood or adulthood. It symptoms respiratory problems, walking inability, speaking or swallowing inability and skeleton deformities due to the muscle weaknesses. Lola had been diagnosed with this type of myopathy. Her condition would make her need her wheelchair, feeding tubes, and respiratory support. Physical and orthopedic therapy would also aid in her mobility.
Part II: Annotated Bibliography
Tallon, M. M., Kendall, G. E., & Snider, P. D. (2015). Rethinking family‐centred care for the child and family in hospital. Journal of clinical nursing , 24, 1426-1435.
The article exhaustively touches on Family-Centred Care, (FCC), that is essential in helping parents with children with disabilities understand the situation. Parents with disabled children feel a lot of pressure when it comes to raising their children. They have to work up to three times harder than parents with normal children. More so, they have to juggle between raising the child and working. These parents’ worries are also heightened by financial restraints that may exist in the family. Pediatric nurses have the responsibility of assisting such parents in coping with the lifestyle that is awaiting them, lest they break down before beginning the journey. FCC also aids in the developmental and health outcomes of children with chronic diseases. The family partnership method assist in guiding the planning, implementation, and assessment of pediatric nurses’ care to families with disabled children. Despite the fact that its efficiency has not been proved in a hospital setting, community nursing practices give evidence of its efficiency.
Keeley, P., Wolf, Z., Regul, L., & Jadwin, A. (2015). Effectiveness of standard of care protocol on patient satisfaction and perceived staff caring. Clinical journal of oncology nursing , 19(3), 353-360.
Care by nurses has been proven to achieve a great deal of positive development for both patients and families. These developments include healing, well-being, and patient satisfaction. The objective of this article is to give an analysis of nurse care and the outcomes achieved. The study was conducted in 7 inpatient units and the effectiveness of nurse care protocol on patient satisfaction measured. The study also involved a comparison between nurse care protocols and perceived nursing caring. According to this article, the findings were such that patient satisfaction increased in cases of nursing care protocol. Perceived nursing caring was even more essential before the discharge of the patient. However, the caring protocol is somewhat complicated and institutions need to be careful when applying the results. All in all, the study was a success in the developmental and health improvements of a patient.
Wrobleski, D. M. S., Joswiak, M. E., Dunn, D. F., Maxson, P. M., & Holland, D. E. (2014). Discharge planning rounds to the bedside: A patient-and family-centered approach. Medsurg Nursing , 23 (2), 111-116.
This article examines the importance of the discharge planning process. It gives the importance of communication between nurses, patients, and family members, prior to the discharge of a patient. There is need for a healthy patient-family relationship that equips both parties with the knowledge necessary for the well-being of the patient post-hospitalization. The patient is also made aware of the sensitivity of their situation, and given an array of treatment option to choose from if need be. The caregivers are also educated on the needs of the patient, analyzing and evaluating health developments and monitoring for symptoms and side effects that may arise during the healing process. However minimal, the studies revolving around the discharge planning rounds to the bedside indicate that this protocol saves a lot of time in preparing patients and caregivers for post-hospitalization procedures as opposed to waiting for caregivers to raise issues after the discharge. There are also some psychological and therapeutic advantages towards the discharge planning process. More so, this protocol showed an improvement in nursing efficiency while conducting the discharge planning process to the bedside.
Part III: Conclusion
These three articles show the role of nurses in helping families cope with cases of chronic diseases. Having a nurse walk a family through the treatment, post-hospitalization care and assessing the progress of a patient makes the family more comfortable in handling the situation. The caregiver has to deal with such kind of a patient for probably the rest of their life. Therefore, it is very essential that they are equipped with the right kind of knowledge and attitude towards the situation. In addition, the caregiver has to provide the right kind of environment suitable to make the patient comfortable which aids in healthy development. It is important for nurses to also know that not all families are the same. Some families may find it harder to cope with a situation and in such cases, patience and reinforcement is key. As for Lola’s case, there was hope since the mother was more than willing to get advice and help in coping with the daughter’s condition as well as provide an inclusive atmosphere for Lola.
References
Keeley, P., Wolf, Z., Regul, L., & Jadwin, A. (2015). Effectiveness of standard of care protocol on patient satisfaction and perceived staff caring. Clinical journal of oncology nursing , 19(3), 353-360
Tallon, M. M., Kendall, G. E., & Snider, P. D. (2015). Rethinking family‐centred care for the child and family in hospital. Journal of clinical nursing , 24, 1426-1435.
Wrobleski, D. M. S., Joswiak, M. E., Dunn, D. F., Maxson, P. M., & Holland, D. E. (2014). Discharge planning rounds to the bedside: A patient-and family-centered approach. Medsurg Nursing , 23(2), 111-116.
