Child Palliative Care

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Child Palliative Care

Palliative care, sometimes called supportive care or comfort care is given to people with serious, active and progressive diseases, those without hope of cure. Palliative care aims to give the best attainable quality of life to the patient and relief stress both for the individual patient and their family. It is given according to the needs of the patient and not dependent on any particular medical diagnosis.
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It’s a special care that entails spiritual, emotional, and most importantly physical care for children who have a serious illness and their families. Child palliative care is continuously given to children and families starting at the diagnosis of a serious illness, throughout the treatment process, during the child’s life and up to the end of the child’s life. It is also provided during the family’s moments of grieve (In Chang & Johnson 2014).

Other than giving the child strength and hope for daily life, palliative care enables them to tolerate the medical treatments. It also enables sick children are to take more control of their care thus improving communication consequently enabling them to understand their choices for treatment. Palliative care also helps children and their families to maintain the best quality of life achievable. Families and carers too are supported by palliative care providers. When the sick child is dying, they need emotional support and it’s the families that should play this critical role.

Childhood is a period of development. Rapid physiological and emotional developments in the period of newborn up through adolescence take place. The illness consequently affects development and hence this dictates the experiences the child goes through. If the child understand their illness, if and how they communicate their feelings about it and whether they are involved in making decisions concerning their illness; all this aspects are affected by their level of development. Palliative care is therefore crucial in shaping the way of life of the child patient. (Bhatnagar & Joshi, 2011).

Kindergarten and school in general has an extremely important role in the child’s life. The daily routine is reassuring and provides distraction and great opportunities for social interaction and mastery. Children play is as such important too. It helps them work and confront issues (Thambirajah, 2011). As the sick child grows through adolescence into a young adult, the palliative care providers need to understand the child’s recognition and appreciation of chances of a short life. This will help them to communicate their wishes and plan for the child’s eventual death (Jeffrey, 2009).

The palliative care providers should also give assistance to family in getting to understand on how to support the sick child and their siblings too as they are affected both directly and indirectly by the condition of the sick child and the likely death. Parents should be supported and guided on how to tend for the need and requirements of the sick child and their sibling at the same time appreciating the overall environment as result of the life threatening condition (Pfund & Fowler-Kerry, 2010). The ill child should be emotionally lifted and reassured that the condition and what they are going through is not their blame as they have not done any wrong. The ill child should be encouraged to share their feelings and express themselves either through art or even music (Hartley & Payne, 2008). The child palliative care providers should provide the families of sick children with necessary and appropriate guidance on how to communicate with the sick child and advise parents of older ill children and adolescents the importance of family gatherings as they provide a platform to talk their feelings out freely to the family members. Palliative care providers should also encourage them to share memories to enhance bereavement and healing. The families of the sick child can also benefit from a member of palliative care provider team that may be available in such discussions. These tragic situations may also require for a palliative care provider to work with the institutions and schools to help other children affected incase of the death of the sick child (Price, & McNeilly, 2009).
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Palliative care for a sick child is provided at the hospital or hospice for sick children. It is a special and specific type of care that aims at preventing, suppressing, soothing or relieving the symptoms of the serious medical conditions and their treatment. The symptoms aimed at, are for example,

  • Pain
  • Loss of appetite
  • Fatigue
  • Constipation
  • Shortness of breath
  • Insomnia
  • Nausea
  • Depression

Some of the common chronic illness and medical conditions that require palliative care include:

  • HIV/AIDS
  • Congestive heart failure
  • Almost all types of cancer
  • Muscular dystrophy
  • Severe sclerosis
  • Motor neuron disease
  • Kidney failure
  • Dementia, and many others.

Child palliative care is given by a specialized group of people that include doctors, nurses, carers and other specialists making a team that works collectively with the patient’s other doctors facilitating an extra support. Palliative care for a child starts at any stage of a serious illness as deemed necessary and can be simultaneous with curative treatment (Amery, 2009; Bern-Klug, 2010).

While caring and looking after sick children or patients in general in the palliative care and support phase of seriously ill patients has been having its place in the healthcare in Australia, palliative care has undergone distinct specialization in the last twenty years. Nurses that are specialized in palliative care have brought special skills and qualities enhancing that support them. These unique skills and qualities come after several years of dedicated interdisciplinary clinical training and continuing education in addition to being informed by the palliative care’s binding philosophies (Thambirajah, 2011).

Child palliative care nurses are specialists who demonstrate high leadership and collaborative practice, through modeling life care, providing mentorship, and also education to other health works and nurses (Pethtel & Engel, 2010). These nurses have diverse knowledge and experience in dealing with pain and the likely complex symptoms accompanied by terminal illness (Aitken, 2009). Children palliative care nurses always work collectively as a team with other professional and relevant groups or bodies to advance the knowledge about caring terminally ill children, doing research and incorporating the findings where they are necessitated (Haley & Daley, 2014).

Everything in palliative care in the recent years has undergone many developments, it can be noted that pharmacology interventions has reached a new level in helping manage chronic pain and the distressing symptoms associated to these life threatening illnesses (Hartley & Payne, 2008). This vital and significance essence of optimizing sick child’s quality of life has contributed to the increased widening acceptance of child palliative care as a significant nursing specialty in Australia and beyond. The values, beliefs and attributes that underpin high level palliative care are significant to good nursing environment. Nurses play a very important role since they are the only real around-the-clock carers in the entire healthcare system (Kent & McCormack, 2010). Nurses taking care of the dying face challenges in the art and science in a cohesive approach to portray dignity, compassion, and individuality in the unique environment they usually find themselves in. In Australia the case of an average person encountering childhood death is rare and therefore the person may less prepared to offer support if their family has a child diagnosed with a life threatening condition. Most feel awkward and uncertain and try to evade contact to the family in the allusion that they don’t want to find themselves in a situation of doing or saying inappropriate things. This leads to the isolation of the families at a time when they really need support. A child’s palliative or comfort care requirements and needs are high. Children are more prone to a greater number of rare eventually fatal and serious illnesses than adults (Abu-Saad, 2008).

Parents and members of the family are direct carers and decision makers for the sick child. Care is usually needed in a 24-hour basis for a number of years hence the parents are required to familiarize themselves with support machines and equipment that are usually complex so as to keep the sick child home (Mitchell, 2008).

Unfortunately, there are a great number of children dying out there without the benefit of child palliative care due to a number of factors. Although hospice personnel and healthcare institutions are better equipped to address issues in regard to terminal conditions, many lack palliative expertise and thus deprive sick children and families the benefits of palliative care (Zeppetella, 2012). Limited access or unavailability of specific palliative care and services deprives sick children of knowledgeable and skilled health care personnel to attend to them in a home-based approach to assist in pain and symptom management. To many families, it’s better to have to choose either life prolonging or child palliative care, and either pediatric or non pediatric professionals, instead of developing individualized treatment plan for the ill child to entail the specific needs and requirements of the specific ill child and family. Hence, the ill child with a terminal condition is likely to suffer the available poor quality of life that most live, and unnecessarily leaving family members with a difficult bereavement (Grinyer, 2012).

Another key problem is that referrals are sometimes received late or not received at all. Some families tend to believe that palliative care is for those at the end stage of illness (Abu-Saad, 2008). There is also lack of understanding of the benefits of palliative care to the children for example in pain and symptoms management as it has occurred that even in healthcare settings, the process of symptoms identification and treatment is not properly addressed (Pfund & Fowler-Kerry, (2010). The nature of the illness may mislead families, with time, the child they presume as better may be losing it. Working together to overturn the misconception and myths about palliative care for children is the key to promote and improve the welfare of the families as well as hold to hope for best quality of life ever for all involved.

Refereces

Abu-Saad, H. H. (2008). Evidence-Based Palliative Care: Across the Lifespan. Chichester: John Wiley & Sons.

Aitken, S. (2009). Community Palliative Care: The Role of the Clinical Nurse Specialist. Chichester: John Wiley & Sons.

Amery, J. (2009). Children’s palliative care in Africa. Oxford: Oxford University Press.

Bern-Klug, M. (2010). Transforming palliative care in nursing homes: The social work role. New York: Columbia University Press.

Grinyer, A. (2012). Palliative and end of life care for children and young people: Home, hospice, and hospital. Chichester, West Sussex, UK: Wiley-Blackwell.

Hartley, N., & Payne, M. (2008). The creative arts in palliative care. London: Jessica Kingsley.

In Chang, E., & Johnson, A. (2014). Chronic illness & disability: Principles for nursing practice.

Jeffrey, D. (2009). Against physician assisted suicide: A palliative care perspective. Oxford: Radcliffe Pub.

Kent, B., & McCormack, B. (2010). Clinical context for evidence-based nursing practice. Chichester, West Sussex, U.K: Sigma Theta Tau International Honor Society of Nursing. Bottom of Form

Mitchell, G. (2008). Palliative care: A patient-centered approach. Oxford: Radcliffe.

Pethtel, L. L., & Engel, J. D. (2010). The palliative care and hospice caregiver’s workbook: Sharing the journey with the dying.

Pfund, R., & Fowler-Kerry, S. (2010). Perspectives on palliative care for children and young people: A global discourse. Oxford: Radcliffe Pub.

Price, J., & McNeilly, P. (2009). Palliative care for children and families: An interdisciplinary approach. Basingstoke: Palgrave Macmillan.

Thambirajah, M. S. (2011). Developmental assessment of the school-aged child with developmental disabilities: A clinician’s guide. London: Jessica Kingsley Publishers.Bottom of Form

Zeppetella, G. (2012). Palliative care in clinical practice. Dordrecht: Springer.

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