Family Having a Child with Life-Limiting Illness - Thesis Example

 Family Having a Child with Life Limiting Illness Incidents of life limiting illnesses and disabilities in children have been on an increasing trend in developed countries in the recent past. Though advances in medical care and technologies have drastically reduced pediatric mortality rates and enhanced life expectancy of the sufferers, the financial cost of managing these conditions continues being a major challenge to the affected families. At the national level, the life prolonging medical care for patients with life limiting conditions have increased their number with very little success in curing the disorders. Consequently, the number of children with terminal diseases continues increasing, raising the cost of their care at family and national levels. Many research studies have been conducted to investigate the financial impact of life limiting disabilities on medical care budgets of various countries especially in the developed world. A study conducted by Michelson and Steinhorn (2007) in England investigated the palliative costs of managing various types of life-limiting disabilities on children. Though the study focused on particular standards needed to cater for patients suffering from a particular life-limiting disorder, it gave insights of financial costs that such life limiting disorders have on families. Majority of all life-limiting conditions require palliative care and in children, such care is concerned with controlling the symptoms and maintaining good quality of life of the child for uncertain period before the child dies (Michelson & Steinhorn 2007). Though death of children with life limiting condition is usually expected, it is difficult to determine when and how such children will die. Therefore, caregivers of people with such conditions are faced with financial challenges of preparing the patients until death. EAPC (2007) noted that though children’s palliative care at national level supports children and young persons diagnosed with life limiting conditions, inclusion of children with other types of disabilities often puts an extra strain on care of such patients. According to Chochinov (2005) majority of children hospices depend of charitable organizations for funding which in most cases is short term and inconsistent. Others rely on short-term grants and statutory funds that are similarly unreliable and as a result, most parents use vast resources to add life to the child is remaining years to supplement the funding for their children’s care. There are different categories of life-limiting disorders most of which are rare with unique symptoms. Consequently, it is difficult to determine the needs and care of children with life limiting disorders. According to Dangel (2005), a strong relationship exists between the requirements of children in need of palliative care and those with other disabilities requiring complex care. However, those in need of palliative care are usually in unstable state, requiring different type of care according to their state of health at any given time. This is in contrast with other types of disabilities, which are generally in a constant state, making it easy to manage and plan for their needs. The unpredictable nature of life limiting disorders makes it more expensive to manage, plan and take care of the sufferer than in children with other disabilities (Dangel, 2005). A research study conducted by Groot, et al (2005) established that the main contributing factor of the huge financial impact borne by the family of the sick child arises from the special needs of the child with the condition and the family itself. Some of the child’s requirements include clinical, psychosocial and social needs (Groot, et al. 2005). Clinical needs include symptom assessment and management in addition to the patient care. The top priority of palliative care is controlling the symptoms, by reducing discomfort and pain of the affected child. However, EAPC (2007) found that the major shortcoming of palliative care is lack of effective treatment of alleviating the suffering of children with life limiting conditions. In spite of the advancing medical technology, EAPC (2007) noted that children with life threatening and terminal disorders experience severe symptoms that negatively affect the quality of their life. According to DH (2007), about 90% of such children encounter general suffering with over 40% afflicted with uncontrollable pain in European palliative care. Though there are numerous options available for alleviating pain to the patients EAPC (2007), noted that only less than 20% of the cases are addressed with effective treatment. Due to lack of adequate treatment, the needs of the patients are directed to the parents to source for efficient medical treatment to alleviate their pain. This causes additional financial strain to the family that is also required to provide psychological, spiritual, social, and communication needs to the patient. To provide these needs to the sick children, families do not have much choice but to contract relevant service providers. This is compounded by the fact that the needs of the patient are consistently changing in both intensity depending on their emotional, psychological and physical state in addition to the effects of the disease (Davies, 2005). In a study evaluating the needs of children with life limiting conditions, Dangel (2005) argues that the acquisition of new functional skills in addition to ensuring maturity and development of a child should be top priority irrespective of the anticipated life expectancy of the child. These activities should be inculcated in addition to the medical interventions such as pharmacological, substitution or removal of malfunctioning organs among other treatments (Dangel, 2005). This requires support from other sectors of society to ensure that children with life limiting disabilities achieve adequate personal growth no matter how short their life expectancy could be. In this case, the family, and the society must be involved to ensure holistic development of the children. The family plays an active role in providing care that entails making complex decisions in best interests of the child. To meet these needs, the family of a child with life limiting condition pay heavy economic and social price. Dangel (2005) noted that family members need education and training to empower them on how to take care of the child and this can only be achieved through relevant training. Moreover, having a child with life limiting condition imposes heavy psychological burden that mainly results to emotions and feelings of guilt, depression, rage, anticipatory grief and escapism (Dangel, 2005). Lack of sufficient social and institutional support to families with children with life limiting disabilities increases the financial burden. Skilbeck and Payne (2005) conducted a research study in United States to establish the number of palliative care specialists in the health care systems. The study established severe shortage of well-trained professionals in skills relevant to children palliative care. This included technical abilities in diagnosis and treatment in addition to teamwork, communication skills and institutional organization (Skilbeck & Payne, 2005). Combination of these factors has increased the costs of palliative care due to high demand for these services in developed countries. To provide the necessary palliative care and lessen the effects of caring for such children, it is crucial for the parents to establish supportive relationship with the relevant healthcare providers. Therefore, taking care of a child with life limiting condition has huge impact on financial state of the affected family. According to Luke, et al (2005), the financial strain is contributed by the increased amount of care to children requiring additional medical care. The extra costs incurred include purchasing special clothes, equipment, drugs, means of transport and diet. Stephenson, (2008) noted that besides the extra costs, most parents caring for a child with life limiting condition invest a lot of time taking care of the child resulting to decreased participation in the labor market. In most cases, the primary care giver who is normally the mother is forced to give up on her career to concentrate fully on caring for the disabled child. Various organizational models have been proposed for enhancing the quality of palliative care of children with life limiting disorders and minimizing their cost. These models include institutionalized pediatric palliative care in hospices, hospitals and nursing homes in addition to home palliative care (Chochinov, et al 2005). These models have unique advantages and shortcomings and therefore no single model is adequate on its own to address the needs of the patient and the family effectively (Chochinov, et al 2005). References Chochinov, M. H., et al.2005 Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology. 23 (24), pp 308-387. Dangel, T. 2005. The status of pediatric palliative care in Europe. Journal of Pain and Symptom Management. 28, pp 176-203. Davies, R. 2005. Mothers’ stories of loss: The need to be with their dying child and their child’s body after death. Journal of Child Health Care. 9(4), pp 278-297. Department of Health. 2007. Palliative care services for children and young people in England. London: HMSO European Association of Palliative Care (EAPC). 2007. Standards for pediatric palliative care in Europe. Europe Journal of Palliative Care. 14, pp 13-26. Groot, M. et al. 2005. General practitioners and palliative care: perceived tasks and barriers in daily practice. Journal of Palliative medicine. 19, pp 110-115. Luke, A., et al. 2005. Children in poor families: Out of pocket expenses for the care of disabled and chronically ill children in welfare families. Journal of Advanced Nursing. 62, pp 400- 412. Michelson, K. & Steinhorn, D. 2007. Clinical paediatrics. Emergency Medicine. 8(3), pp 178-203. Skilbeck, J.& Payne, S. 2005. End of life: A discursive analysis of specialists palliative care nursing. Journal of Advanced Nursing. 51(4), pp 321-337. Stephenson, J. 2008. Palliative and hospice care needed for children with life threatening conditions. Journal of the American Medical Association. 284, pp. 1097-1106. Read More