Perceptions by Voluntary Organizations Involved In Cancer Support for People

Perceptions by Voluntary Organizations Involved In Cancer Support for People Undergoing Radiotherapy

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Introduction

One in every three or more individuals will at some stage in their lives develop cancer. In addition to this, one person in every four people will die as a result of the disease. This is to say that, each year, more than 200, 000 individuals are diagnosed with the disease and more than 120, 000 of these lose their lives from cancer. As it follows, improved prevention of the disease, enhanced detection of cancer and improved care and treatment is critical to all. Because of the immense numbers of cancer patients observed throughout the world a number of support groups and organizations have also come about. In England, there are numerous of these voluntary support agencies and groups that work extraordinarily hard to achieve a number of aims and objectives (Cancer Research UK, 2003).

An example of such an agency in England is Cancer Plan an agency that sets out the first, all-inclusive National programme for cancer in the UK. The agency seeks to fulfil a number of aims which include saving more lives, ensuring that individuals with cancer access the appropriate professional care and support, in addition to, the best treatment plans, tackling the inequalities that exist in health that mean that workers who are unskilled are twice likely to perish from the disease as professionals and building for the future by investing in a workforce for cancer, through preparation for revolution in genetics and strong research so that the NHS never loses to the disease again (Cancer Research UK, 2003).

Other agencies like this have erupted all over the country and are contributing to the fight against cancer by having such aims and objectives and by helping the NHS not to fall behind in caring of cancer patients again. For the first time, such plans allows for comprehensive strategies to be developed for bringing together screening, prevention, diagnosis, care and treatment for cancer patients and the required investment to deliver such services with respect to improved equipment, staffing, treatments, drugs and information system. The plan by NHS set out the plans by the government for reforms right and investment across the NHS, to establish a health service for the current century offering convenient, fast, high quality care with cancer patients at the agency. The plan, as well, identified services to cancer patients as high priority to benefit from such enhancements. It promised improvement on prevention of cancer, on improved services access and on improved research (DoH, 2000).

Aim of the Study

The aim of this research is to examine the role voluntary organizations play in support of individuals diagnosed with cancer undergoing treatment in radiotherapy and their families.

Literature Review

The need for an inclusive strategy for bringing together screening, prevention, treatment, diagnosis, and care for cancer patients has well been acknowledged and recognised in cancer plan by the NHS (DoH, 2000). However, it is essential to note that while considerable advances in treatment of cancer have been made with improvement of survival rates, evaluation of support services is less established (Cancer Research UK, 2003). In the United Kingdoms psychological and other forms of support are funded and provided by several, different organizations. Indeed, services of support have developed in an ad hoc way and traditionally from a period when the trend of survival and treatment of cancer was different. As it follows, significant differences occur between different areas in models and levels of support.

Services of Support are Available

A person with cancer, and especially when they are young, experience enormous uncertainty throughout the period when they are ill, from diagnosis to treatment, and the movement and transition from treatment and facing the future. Many patients have been shown to wonder why the cancer had to affect them, and as Bearison (1991) argues, this can result to numerous rationalizations, like random chance, the will of God or even punishment for something. People with cancer, therefore, experience potentially wide spectrum of experiences and emotions like fear, anger, self- blame, frustration, sense of loss of control and even depression.

Recognizing and acknowledging this is crucial. Research argues that different patients implement and interpret different strategies for coping. For instance, Kameny & Bearison (2002) found that women or female patients are likely to share their emotions and feeling associated with their disease as compared to the male patients. Generally, age and gender have for a long time been associated with future functioning in psychology. As it follows, male cancer survivors have more negative feelings and view of the future when compared to the female survivors (Bearison, 1991).

Within the available literature, the essentiality of a number of support systems during the period of illness is apparent, especially, ongoing support from family, friends and society, both emotionally and physically during therapy and treatment. The essentiality of friends is also recognized. Professionals argue that both sets of friends, cancer- related and non- cancer related, play an essential role in psychosocial support (Balen et al., 1998). Cancer friends are usually seen as persons who appreciate what it is like to suffer the disease, and, hence, it is easier to share with them certain feelings and emotions. Non- cancer friends are essential because they help patients retain some normality sense and a link to the non- cancer world and self. There is, therefore, a need to provide individuals with cancer support and opportunities to meet with peers and engage in a number of activities. Evaluations of programs like activity holidays for people with cancer and cancer support groups are usually seen as positive providing a chance for the patients to meet and discuss matters and provide support to each other in a suitable environment (Balen et al., 1998).

The essentiality of support during the trajectory of illness has been acknowledged widely and, therefore, studied in research. For instance, to show the essentiality of support services a study carried out in 1991 by McArdle aimed to evaluate the effects of support mechanisms from a nurse specializing in cancer and support organization on prevalence of psychological troubles after therapy. The prevalence of these troubles was assessed using a self- rating scale, a questionnaire and a number of subscales. The women were assigned randomly to two possible groups, one of them being a SMC group. An APN nurse delivered a SMC in addition to an intervention within weeks of diagnosis. The APN was qualified with a nursing Masters degree. She also had skills and in-depth knowledge in caring of this group. The study found that such support resulted to more positive outcomes as compared to the support by unqualified professional without skills and knowledge of the disease (McArdle, 1991). The study as such examined the importance of support especially from medical professionals, and found that the more the cancer patients received support and help from the professionals the more the positive improvement and treatment outcomes.

Another study described by McArdle looked to examine the same effects of support on patients and measured the impact of an intervention on side effects, subjective distress, quality and coping of life cancer patients receiving radiotherapy. In this survey, 134 patients out of a total of 175 patients agreed to take part in the study and to be randomised to the intervention team or control group. The study did not find any considerable different between the two groups, but a considerable difference in QOL showed that patients in the experimental group had a poor QOL than those participating in the control group (McArdle, 1991). The intervention trend in this study had a significant impact on the perceived distress of patients. The patients in the intervention side rated less distress emotions and reactions when compared to those in the control group. The intervention did not demonstrate any measurable impact in perceived side effects of therapy (McArdle, 1991). These results show that specific support interventions during radiotherapy and treatment can alleviate perceived stress feelings and emotions during radiotherapy but might not have any significant effect on mood, coping skills and quality of life.

Support groups are provided and availed to cancer patients at a number of treatment centres. However, support is more focused on a specific range of factors and groups, largely parents, teenagers, siblings and bereaved families. The Cancer Research institution in the UK, for instance, found it interesting that some support centres provided more support for bereaved families than they did for the actual cancer patients (Cancer Research UK, 2003). This is an indication that there is still some need for more support for the actual patients as they are the ones in need of the support than the other groups like their families and friends.

Manning conducted a survey recently and found that the incidence of the disease continues to increase, and that an increasing number of individuals diagnosed with cancer will neither be cured, nor die from cancer but will have different needs of learning how to adjust and cope with the consequences and implications of the disease. For many, such consequences might involve treatment for numerous years, usually at more than one centre of treatment and by a number of professional teams. This study is exceedingly critical for this paper. This is because it highlights the increasing needs for support services like need for information on how to cope and live with the disease. The study indicated that the information that is relevant and easy to understand to the situation of the patient can help them and their carers navigate different systems of healthcare, access services and self- manage, make decisions that are informed and participate actively in their general plan of healthcare (Manning, 2009). In doing this, the experience of the patients can be improved and litigation can be decreased. Improvements in survival were also shown to have essential impacts on the emergence of supportive care needs and extra information. This could include information related to the treatment’s long- term effects and other issues related to survivors that can help the patient regain some sense of normalcy in their live and access the informal and formal support provided by a number of voluntary organizations including opportunities for health education (Manning, 2009). This study holds a lot of meaning for this research paper because it forms its basis, which is the need for support services and why these services are essential.

The same study indicated that some individuals diagnosed with cancer are more likely to access support and receive information. It also pointed out that staff and patients felt that direct contact with support teams and professionals either during appointments or during calls improved the experience of patients as it makes it possible for patients to share their concerns with the professionals and support teams. The researcher found that not all cancer patients could access their support even when support groups existed. Just the same, when social and health care professionals know of the services of the voluntary organizations provide, the fact that standardized protocols and practice are absent means that the confidence referrals require to take place is not always present. This indicates that more cancer patients do not access the required support services to help them deal with the issues of their disease (Manning, 2009).

The same researcher indicated that patients seemed more likely to access support and receive essential information when they had a knowledgeable and dedicated clinical nurse professional or any other central worker, had many of their treatments within not more than one social and health care centre, they are part of a continuous care programme or treatment, they benefited from an information pathway agreed upon regionally and when patients of breast cancer were 4 or more times more probable to have obtained written information during diagnosis compared to those with other kinds of cancer. Outside of these categories, the trend seemed to be for those individuals who were less likely to access support services and less well informed (Manning, 2009).

References

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Bearison, D. (1991). They Never Want to Tell You Children Talk about Cancer. Harvard University Press.

Cancer Research UK. (2003). Child Cancer Factsheet. Retrieved from www.cancerresearchuk.org

Department of Health. (2000). The NHS Cancer Plan: A plan for investment, a plan for reform. London: The Stationery Office.

Eiser, C., Havermans, T. & Eiser, R. (1995). Parents’ attributions about childhood cancer: Implications for relationships with medical staff. Child: Care, Health and Development, 21 (1), 31-42.

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International Confederation of Childhood Cancer Parent Organisations (ICCCPO). (2000). Childhood Cancer: Guidelines for Treatment and Care. ICCCPO.

Kameny, R. & Bearison, J. (2002). Cancer narratives of adolescents and young adults: A quantitative and qualitative analysis. Children’s Health Care, 31 (2), 143-73.

Manning, D. (2009). Scoping the existing services for a ‘Wellness Centre’, University College London Hospital, North London Cancer Network. London: Macmillan Cancer Support.

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McArdle, M. et al. (1996). Psychological support for patients undergoing breast cancer surgery: a randomised study. BMJ 312 (7,034): 813–6.

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