Sibling Support in End of Life Care
Clinical Question
P (problem/population) - siblings of actively dying patients
I (Intervention) - sibling preparation and involvement at patient’s end of life
C (comparison) - compared to no preparation and involvement
O (outcome) - impact grief response of the siblings
Target population – siblings aged between 3 and 21 years of incurably ill kids at end of life of patients.
Sibling Preparation: This refers to the age and support information on the patient’s end of life status. It provides various opportunities for the sibling to hold, ask questions, and visit. It also refers to the participation of kids in activities that make memory including; prints and hand molds. This describes what a child may see or hear.
Grief and Response: This is a regular response to a significant life changing or loss event. Expressions and reactions of pain differ at various stages of maturity. Among children, common reactions to grief are; feelings of guilt, regressive behavior, emotional responses, difficulty sleeping, loneliness, anxiety, and withdrawal (Gooding, 2011, p. 67).
Recommendation
Siblings of actively dying children should be prepared and involved in various activities to facilitate the necessary grief responses. End-of-life care is one aspect of palliative care that supports a dignified and peaceful death for the child. Therefore, neonatal nurses play a major role in providing end-of-life and palliative care.
Discussion
The aim of this study is to examine the sibling’s involvement and perception at end of life in hospital or home care setting and compare factors to adjustment after death. After the comparison, the results show that siblings who are involved in the care home group were more involved in various activities, and were supported compared to siblings in the hospital group.
Introductory/background information
Child life specialists working in a palliative care or a pediatric hospital setting have a duty of providing resources, appropriate interventions, and support for the ill children. Notably, approximately 30,000 children lose their parents, siblings, and relatives every year. The majority of these children live with a life-limiting illness. However, with palliative care, a lot can be addressed. At the time of death, siblings’ recollection in hospitals and at home show that 85% of the home care group, and 28% of the hospital group react differently to unavoidable circumstances. A recent study answered PICO question by examining the siblings’ involvement at the end of life, and perception to unfortunate conditions. Results of this study showed that siblings in the hospital setting were given less support compared to those who are part of a home care group. At this time, 80% of children in home care groups were able to interact with their siblings, hold, touch, and play around with them. On the other hand, those in the hospital setting reported more passive activities including; waiting, watching television, and leaving the room. Significantly, children in the hospital group (80%) compared to (15%) in the home care group describe death as scary and horrifying (Gries, 2008, p. 11).
There is a distinct perception of children in the hospital setting and those in the home setting. When children are at the terminal phase of illness, their siblings are very concerned about them, their health, and progress. Subsequently, this finding reveals that there is need for health care professionals to interact, console, and give these children hope. The RN for instance, has a major role to play in keeping children interact and involved in a normal manner, giving the appropriate information, and explaining changes. Subsequently, studies show that interventions must reflect and encourage RNs in utilizing their clinical expertise, and they must also be age appropriate in dealing with the matter.
Health Benefits, Side Effects and Risks
Assisting siblings after their sister or brother passes on can promote development and growth, and facilitate healthy adjustment to the loss (Teno, 2007, p. 55).
Analysis
The death of a sibling is a very symbolic event to a child. Even before a sibling to a child dies, the terminal phase of the illness affects the sibling to an extent of being traumatized. Siblings of the ill patient are concerned about their ability to comfort their brother or sister, pain that the child is undergoing, and social support.
Findings
P (problem/population) - siblings of actively dying patients
I (Intervention) - sibling preparation and involvement at patient’s end of life
C (comparison) - compared to no preparation and involvement
O (outcome) - impact grief response of the siblings
P (problem/population) - siblings of actively dying patients
The above question identifies all interventions taken by the sibling, parent, and the health professional at the time of death of a sibling. The sibling who has been left by the brother or sister faces great challenges trying to cope with the situation. They are too young to bare such lose, secondly, they their close connection with the dead brother sister is unimaginable. Quit intervention in such situations is very important in comforting the sibling. Both health professional and parents have a duty to console the kid to keep their minds away from the event. Before the sibling dies, a lot crosses the mind of the other sibling. They wish and pray for quick recovery and reunion with their ill brother or sister. Quite often, siblings who lose their brother r sister undergo depression for a while before the whole situation calms. In such instances, depending on the location, RNs and parents of these siblings must act fast and console the children.
I (Intervention) - sibling preparation and involvement at patient’s end of life
This is a crucial phase for a sibling watching his/her brother/sister die in bed. The sad issue about this phase is that no one in the family talks about the fact that the sibling is getting weaker and weaker, and that chances of him/her dying are slim. Intervention is very crucial in this case; the parents of the sibling should begin by being unembarrassed about the fact that in the long run, everyone will die. Conversations are easier once people approach from the understanding that, no one can avoid it, and that the experience is universal. If no family member talks about the dying, then dying is on everyone’s mind, or no one is willing to acknowledge that the illness is progressing. In most instances, there is a plan to keep silent in order to keep siblings away from discussing deepest fears and painful feelings. However, in asking difficult questions, parents and the rest of the family must be ready to hear hard answers (Hockenberry, 2013, p. 234).
The best way to intervene in such a situation is to prepare early. It is always easier to cope with the situation if all interventions are planned early enough. Seemingly, trying to make preeminent decisions about care, leads to confusion, and added stress. Siblings who cope well in such situations are the ones who have conversations with their parents and family members. The following interventions are coherent in helping siblings cope with the loss of a loved one.
Keep communication open: conversations on the unfortunate subject should start early enough to prepare the sibling psychologically. Researchers recommend open conversations to the entire family. Open conversations helps in preparing the sibling in predictable and unpredictable situations.
Play and Normalcy: play is reassuring for children because it is the primary modality of a child. It assists in making health care experience more comfortable and less intimidating. From the study, it is evident that siblings in home care setting cope better compared to those in the hospital setting. This shows that play is vital in changing the psychology of children. When playing, children will easily forget for a while about their ill sibling. Additionally, play reduces anxiety produced by worrying conditions. Secondly, child life programs play part in providing opportunities for play in surgical, ICUs, emergency departments, radiology, and inpatient areas. Play is important because it can be adapted to different age groups in pediatrics. A child specialist should use healthy medical play to help children cope with their feelings. Such exercises offer insight into siblings’ level of understanding, and concerns. Some of the medical play that are initiated by health professionals include; dramatic play, puzzles depicting medical themes, and artwork using health care materials (Thompson, 2009, p. 723).
C (comparison) - compared to no preparation and involvement; siblings who are not psychologically prepared about the illness of their brother or sister are the worst affected. These children behave in unfamiliar ways that no one can understand. They are withdrawn from the rest of the family, are silent, refuse to eat, and other go an extent of weeping. However, siblings who are initially psychologically prepared are found to have reduces anxiety, worry, and grief. Psychological preparation helps siblings manage and anticipate health care experiences. Such children can walk around the surgery area relaxed. Strategies used in preparing children psychologically include; guided imagery, relaxation, and pain-management techniques. During operation, a child life specialist can enhance the ability of the parent to support the child.
O (outcome) - impact grief response of the siblings; among children, common reactions to grief are; feelings of guilt, regressive behavior, emotional responses, difficulty sleeping, loneliness, anxiety, and withdrawal. There is a distinct perception of children in the hospital setting and those in the home setting. When children are at the terminal phase of illness, their siblings are very concerned about them, their health, and progress. RNs and families should help these kids cope with the regretful situation. As seen in the study, children in the home care setting, and those in the hospital setting react differently after losing a sibling or a parent. It appears that the hospital setting is not as friendly as the home care setting.
Play is reassuring for children because it is the primary modality of a child. It assists in making health care experience more comfortable and less intimidating. Play reduces anxiety produced by worrying conditions. Secondly, child life programs play part in providing opportunities for play in surgical, ICUs, emergency departments, radiology, and inpatient areas. Play is important because it can be adapted to different age groups in pediatrics. A child specialist should use healthy medical play to help children cope with their feelings (Kreitler, 2012, p. 334).
Conclusively, this study has revealed that end-of-life nursing care plays a major role in determining the reaction of distressed siblings. RNs, parents, and family members of the ill sibling have a duty of comforting and giving the patient hope. Subsequently, a sibling who is psychologically prepared for any stage in the illness of their sibling is able to cope better compared to the one who is not psychologically prepared. There is a distinct perception of children in the hospital setting and those in the home setting. When children are at the terminal phase of illness, their siblings are very concerned about them, their health, and progress. RNs and families should help these kids cope with the regretful situation in the best way possible. Moral support, guidance, love, and normalcy during devastating times such as illness play the biggest part in giving hope to the sick patient and their siblings.
References
Gooding, J. S., Cooper, L. G., Blaine, A. I., Franck, L. S., Howse, J. L., & Berns, S. D. (2011, February). Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. In Seminars in perinatology (Vol. 35, No. 1, pp. 20-28). WB Saunders.
Gries, C. J., Curtis, J. R., Wall, R. J., & Engelberg, R. A. (2008). Family member satisfaction with end-of-life decision making in the ICU. Chest journal, 133(3), 704-712.
Hockenberry, M. J., Wong, D. L., Wilson, D., & Wong, D. L. (2013). Wong's nursing care of infants and children. St. Louis, Mo: Elsevier Mosby.
Kreitler, S., Weyl, B. A. M., & Martin, A. (2012). Pediatric psycho-oncology: Psychosocial aspects and clinical interventions. Chichester, West Sussex: Wiley-Blackwell.
Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association Between Advance Directives and Quality of End‐of‐Life Care: A National Study. Journal of the American Geriatrics Society, 55(2), 189-194.
Thompson, R. A. (2009). The Handbook of Child Life: A Guide for Pediatric Psychosocial Care. Springfield: Charles C Thomas Publisher, LTD.
