Impact of Multiple Sclerosis on Family - Case Study Example

RUNNING HEAD: Impact of Multiple Sclerosis on Family Impact of Multiple Sclerosis on Family of the Under the guidance of Impact of Multiple Sclerosis on Family Introduction Chronic illnesses not only impact the life of the patients but also that of their family members. They can have a holistic impact on the physical, social, emotional, spiritual, economic and psychological well being of both the patient and the family members. One such illness which can severely impact the family members is multiple sclerosis. Multiple sclerosis imposes a certain amount of burden not only on the patients but also on the caregivers. The unpredictability of the prognosis, the possibility of severe physical disability and cognitive add to the despair. It is very important to evaluate and take appropriate measures to relieve burden of caregiver because; health-related quality of life of the patient is inversely correlated with caregiver burden (Alshobaili et al, 2008). In this essay, the impact of multiple sclerosis on the family and in turn, the impact of family structure on the illness will be ascertained and evaluated through a case study to enhance the overall understanding of the impact of chronic diseases on the family so that appropriate measures are taken to minimize the impact and the care of the patient enhanced without affecting the quality of life of the family. Impact of illness/condition on the family’s structure 1. Family structure Samanthas family consists of four members: 33 year old Samantha, her husband Nick and their two daughters aged 10 and 8 years. Both Samantha and Nick were earning members until the diagnosis of the disease in Samantha. As the disease progresses, Samantha will not be able to move normally. She may not be able to do activities normally. She may cease to go for work or take up only part time work. Thus the disease may even affect the income of the family. 2. Developmental tasks Samantha is in the middle age. An active teacher until the diagnosis of multiple sclerosis, she may not continue to be as active and cheerful as before. Besides the gloom of the diagnosis and the disabilities due to the disease process, Samanthas responsibility as the care-taker parent of her children is likely to change. She will now be more dependent on her husband and the care-taker maid to take care of her children. Depending on the extent of disabilities, Samantha may need help for day-to-day chores like cooking, bathing, washing clothes, cleaning the house and other activities. Her husbands responsibilities will increase. Other than becoming the only earning member of the family, he may have to support Samantha in daily chores and cooking, in her day-to-day activities and also in the care of their children. The children are in middle childhood age group and are of minimal help in day-to-day activities. The increase in responsibilities causes increase in work load for Nick which can lead to increased frustration. The children are not informed about their mothers illness and hence are not in a position to understand as to what is happening to her. They are also likely to get neglected and this can affect their behavior and education. 3. Environment Samantha and her family are currently living in a new community at Esplando. The crime rate in that area is much low when compared to other areas. The environment is positive, but the couple have lack of knowledge of the new community, the transportation system, grocery stores, markets, malls, health care facilities and pharmaceutical locations. They are also unaware of the organizations which help those with chronic illnesses like multiple sclerosis. Despite easy accessibility to all facilities, the lack of awareness of the resources can be a source of distress and frustration to the couple. 4. Family strengths Family strengths also have an impact of illness on the family. In case of Samantha both her parents and in-laws are not in a position to help her. Both she and her husband do not have siblings to share the burden of work. Her children are too small to get involved in the care of their mother. Also, Samanthas husband has lost his composure due to stress and the fact that his daughters have developed behavioral problems, causing a disturbance in the relationship with his wife. Such an attitude from his side is detrimental to the the health condition of Samantha. Just as the illness has an influence on each family member, each family member also has an influence on the illness” (Kozier et al, p. 80). Impact of family on the illness The diagnosis of Multiple Sclerosis in Samantha has raised several concerns in her family. In multiple sclerosis, family caregivers bear most of the burden of care (Alshubaili, Oheari, Awadalla, et al, 2008). Samantha is a school teacher and her husband is a fire fighter with awkward working hours. They have 2 young daughters aged 10 and 8 who are too young to take care of their mother. Samanthas parents are very old and cannot be of any help and her husbands parents stay very far away and thus cannot of any help either. Samanthas family has recently moved to a new place and thus the family is not aware of the neighbourhood. Thus, Samantha and her husband are overwhelmed at the diagnosis of multiple sclerosis. The more information the couple have about the disease, the more they become anxious. This is because; multiple sclerosis is a progressive, non-treatable disease with uncertain exacerbations, course and prognosis. The disease can lead to many complications. About 5- 10% of the patients eventually develop major psychiatric disorder or dementia (Lazoff, 2008). Trigeminal neuralgia is common and about one third of the patients develop eye symptoms like diplopia on lateral gaze. Visual acuity can get impaired. The patient may develop partial transverse myelitis, acute disseminated encephalitis, focal neurological deficits, ataxia, dysphasia and meningismus (Dangond, 2008). Recovery from an acute exacerbation may vary from one patient to another. 20-35% of patients with multiple sclerosis go in for almost complete recovery of acute exacerbation within 8 weeks (Lazoff, 2008). Those with optic neuritis regain visual acuity in 8 to 12 weeks (Lazoff, 2008). Depending on the severity of acute exacerbation, the patient may need to be hospitalized. Until the patient recovers, the husband and children will need to take care of themselves and Samantha too. Though parents of Samantha stay elsewhere and are not in a position to help Samantha in any way, the very fact that their daughter is suffering from such a debilitating disease causes a great deal of emotional and psychological stress to them. According to Frank (2002), in any chronic illness, "in addition to the partner, those involved in sharing the burden include: in the older generation, adult children; in the middle generation, both parents and children; and in children, parents and siblings." Health determinant influencing the family There are several determinants of health, one of which is social determinant. Other than the treatment provided in health care centers, there are many other factors which influence the health of Samantha. The age, genetic make -up and sex of the individual has a major role in the outcome of any disease. These are factors which can not be manipulated. But there are other factors which are amendable and have a major role in health outcomes. These include lifestyle, individual behavior and social and environment factors. Samantha and her husband are not much socially active. They have no siblings and their parents stay in a far away place. They have not yet made friends in their new location. Thus they lack a social supporting network. Nicks job is demanding and is away most of the times. Though Samantha loves her job as a teacher, she is unable to pursue because of the tiring nature of her disease. Decrease in social activity can result in loneliness, social isolation and dissatisfaction in life, all amounting to depression (Bhatia and Gupta, 2003). According to Kozier et al (2004), "social support from the families, friends, and communities could be very helpful to solve and to deal with problems as well as control over life circumstances." Intrafamilial impact Only Nick knows about the disease in the family. Their children are unaware of their mothers illness. Nick is frustrated because of the increase in work load, increase in responsibilities at home, increase in the burden of income, change in his roles and responsibilities, lack of support from outside and constant complaints from the teachers of their daughters about their behavior in school. His concern for his wife and children, uncertainty of the disease, change in the environment and helplessness has increased his frustration. Interfamilial impact Samanthas parents and in-laws are not in a position to help her because they live very far away. Her parents are in old-age and hence are not of much help. Their friends also live in a distant community in which they were living before coming to this new environment. In the new community they do not have any friends. Thus the couple have no support from other families. Extrafamilial impact The community can have an impact of illness on the family. Samantha and her family have moved to a new location in Toronta where they do not have any friends and are not much familiar with the location. Another important concern for Samantha is the care of her daughters. The daughters are unaware of the illness in the mother. The father works in shifts and is not much available to take care of the children. When Samantha and her husband are away for work, the children are taken care by a nanny who has flexible working hours. However, the illness in the mother has has an impact on the children in the form of behavioral problems about which their teachers have complained. All this has amounted to severe stress situation in the family, leading to differences of opinion between the husband and wife to such an extent that it is even affecting their marriage. In a study by Lewis, Woods, Hough and Bensley (1989), the authors opined that "more frequent illness demands and higher levels of marital adjustment were associated with familial introspection, that is, coping behavior characterized by frequent feedback, reflection, and discussion in the family and that the quality of the father-child relationship was significantly affected by this type of coping behavior." Local community agency for Multiple Sclerosis The local agency which can offer valuable support to Samantha is the Multiple Sclerosis Society of Canada, a branch of which is located in Toronto. The web address is www.mssociety.ca/toronto. The address is 175 Bloor Street East, Suite 700, North Tower, Toronto, ON M4W 3R8. The telephone number is (416) 922-6065. The contact person is Angela Rodriguez. The client can use public transportation from home to reach there. By car, it takes 7 minutes to reach the agency. The agency is dedicated to enhance the quality of life of those suffering from multiple sclerosis. The agency provides sufficient information about the disease, the organization and the services provided by the agency. The agency is a member of the International Federation of Multiple Sclerosis Societies and thus coordinates with research efforts all over the world. The agency has a network with support groups, expert consultations, equipment and special assistance funding, referral contacts, social action and advocacy, journey to wellness programs, client/family companion program and many such programs which are useful for the patients and family members suffering from multiple sclerosis. Eligibility criteria Types of services The client will need different types of services to support her through the illness. She will need a social worker to ascertain her needs and the needs of her family and coordinate help from various resources. Treatment for multiple sclerosis can cost a lot and the client may need financial help for her treatment. The social worker can organize collection of donations, free equipments, incontinent supplies and wheelchairs. Free or subsidised treatmnent can be sought. 300 dollar bursary for the education and day-to-day living of each kid per year can be sought. The role of nursing is authenticated in helping people move towards independence in all activities of daily living. They take up the role of a family member. Their actions have an impact on the individual and affect their levels of dependence/independence and these include biological, psychological, socio-cultural, environmental and politico-economic variables (Roper et al, 2002). Other factors which have a direct effect on health outcomes are financial status, stress, fear and cultural norms. These issues must be addressed whenever possible and if necessary take help from social worker. The challenge for providing spiritual care for people living with an incurable illness is for the carers and the health professionals to identify their own spirituality. This requires a reflection on lifes meaning, beliefs and values held (Ronaldson, 1997). According to Nortedt and Riise (2003), "using quality of life measures provides additional information in evaluating the effects of treatment and in studying the development of the disease." According to Nortedt and Riise (2003), "using quality of life measures provides additional information in evaluating the effects of treatment and in studying the development of the disease." "To develop genuine partnerships there must be respect, trust, positive and open communication, listening, and mutual informing between the nurse and the family" (Friedmann et al, 1997; cited in RNAO, 2002). Such partnership can be developed by recognizing the need of the assessment of the situation by family, respecting the role of family members in the management of the disease, ascertaining and determining the extent of involvement of various family members and finally by negotiating the roles of family and nurse within partnership. Barriers to health care access The main barriers to health care access in the client are lack of awareness of resources and financial constraints. The client and her family have moved to a new community and they are yet unfamiliar with the surroundings and the local resources that are useful for the treatment and management of the condition. Their friends also live in a different community and the family has not yet made any new friends in the neighborhood. Both the wife and husband dont have any siblings who can help them and their parents live far away. Until the diagnosis of multiple sclerosis, both the wife and husband were working people. However, the disabilities due to the disease may decline Samantha from pursuing to work. Thus, the income of the family decreases and the added burden of treatment will further contribute economic crunch in the family. Other major sources of expenditure could be hiring people for help, transport to medical facilities and appointment of tutors for their children. Role of nurses Nurses play a major role in family practice (Alsaffar, 2005). Nurses, by virtue of their proximity to the patients develop a sense of empathy and caring feeling which comes naturally to them and thus are able to promote the emotional well being of the patient. To help patients with chronic illness like multiple sclerosis, nurses need to establish a good relation between themselves, the patient and her family. According to the College of Nurses, Ontario (2007), the main goal of nursing in family practice is to cause restoration, maintenance and advancement of health of not only the individuals but also of individual groups and communities. In case of Samantha, family practice nurse needs to function as an advocate and support her as she navigates through the health care system (Alsaffar, 2005). The nurse needs to provide her information about her local resources, health promotion strategies, health education and measures to prevent recurrences (Alsaffar, 2005). The nurse needs to assist the patient and her family members in triaging through telephone and assist non-professional staff members in making valuable decisions that require certain critical thinking. The nurse needs to ensure continuity of treatment, regular follow-up with physician and compliance to treatment (Alsaffar, 2005). The nurse also needs to assist in completion of health records, and documentation essential for insurance claims and WSIB in order to facilitate required care and initiatives for back to work (Alsaffar, 2005). References Alsaffar, A. (2005). The Importance of the Registered Nurse in Family Practice in a Transformed Health Care System in Ontario. Ontario Family Practice Nurses. Retrived on 11th March, 2010 from http://www.rnao.org/Storage/15/919_OFPN_Paper.pdf Alshubaili, A.F., Ohaeri, J.U., Awadalla, A.W. and Mabrouk, A.A. (2008). Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study. BMC Health Serv Res., 8, 206. Retrieved on 22nd Feb, 2010 from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2576463/?tool=pubmed Bhatia, S. & Gupta, A. (2003). Impairments in activities of daily living in Parkinson’s disease and implications for management. University of Deli, India. Canadian nursing association or CNA. (2002).Code of Ethics. Retrieved on 22nd Feb, 2010 from www.cna-aiic.ca College of Nurses of Ontario or CNO. (2005). Ethics. Retrieved on 22nd Feb., 2010 from www.cno.org. Dangond, Fernando. Multiple Sclerosis. Emedicine from WebMD. July 3, 2008. Retrieved on 22nd Feb., 2010 from Frank, A. (2002). Impact of chronic illness on the family. Journal of the Royal Society of medicine, 95(1), 57-58. Kozier, B.,Erb,, G., Berman, A., Burke, K., Bouchal, D., & Hirst, S. (2004). Fundamentals of nursing: The nature of nursing practice in Canada. (Canadian Edition). Toronto, ON: Prentice Hall. Lazoff, M. (2008). Multiple Sclerosis. Emedicine from WebMD. Retrieved on 22nd Feb., 2010 from Nettina, S.M. (2006). Manual of Nursing Practice. (8th ed.). New York: Lippincott Williams & Wilkins. Lewis, F.M., Woods, N.F., Hough, E.E., Bensley, L.S. (1989). The familys functioning with chronic illness in the mother: the spouses perspective. Soc Sci Med., 29(11), 1261-9. Multiple Sclerosis Society of Canada. (2010). Hamilton Chapter. Retrieved on Feb., 22nd, 2010 from http://chapters.mssociety.ca/default.aspx?ChapterID=315&PageID=822&L=2 Neal, K. (2007). Nurse-Patient relationships. Retrieved on 22nd Feb., 2010 from http://www.nursing-practice.co.uk/docs/newCh5.pdf Nortvedt, M.W., and Riise, T. (2003). The use of quality of life measures in multiple sclerosis research. Multiple Sclerosis, 9(1), 63-72. Rolfe, G., Freshwater, D., Jasper, M. (2002). Critical reflections for nursing. Basingstoke Palgrove. Ronaldson, S., 1997. Terminally Old. Retrieved on 22nd Feb., 2010 from: http://www.ciap.health.nsw.gov.au/hospolic/stvincents/stvin98/a4.html Roper, N., Logan, W. & Tierney, A. (1996). The Elements of Nursing Model for nursing based on a Model for Living. (4th ed.). Edinburgh: Churchill Livingstone. RNAO. (2002). Nursing Best Practice Guideline: Supporting and strengthening families through expected and unexpected life events. Retrieved on 22nd Feb., 2010 from http://www.rnao.org/Storage/15/944_BPG_Family_Rev06.pdf Read More