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Voluntary Organizations Involved In Cancer Support

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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 the 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 the voluntary organizations play in support of individuals diagnosed with cancer undergoing treatment in radiotherapy and their families.

Objectives of the study

The following research will have three main aims or objectives:

To pinpoint what services of support are available.
To highlight if support services are availed to the family members of the patients.
To identify how different kinds of support services are advertised.

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 the 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.

For instance, in 1995 a study was carried out, which found that paediatric oncology community professionals like nurses were funded by the CLIC, NHS, Cancer Relief Fund and other support agencies. Most of these support groups were found to be based at regional centres for treatment with the rest being based at the district public hospitals. The study also identified a considerable difference in treatment and care practices according to the funding source and location. However, past studies have tended to emphasize more on a few regional treatment centres and, as a result, only limited information is available about the different provision patterns and how these services meet the needs of the families and patients. There is, therefore, a gap in research in respect to evaluation and documentation of psychological support available to patients of cancer and their families throughout the United Kingdom (Hunt, 1995).

In light of this issue, the ICCCPO or the international confederation of childhood cancer parent organizations recently came up with guidelines on what patients and families should expect during care and treatment of their sick ones. These are possibly an essential benchmark in the history of cancer treatment and care. The guidelines set out principles and standards relating to the treatment and diagnosis, psychological and social care and reintegration of post treatment. These guidelines cover elements like economic support, information, maintaining of the education or job of the patient, coping support services for patients, parents, and siblings and unrestricted access to groups and agencies of support (ICCCPO, 2000).

A number of studies have shown that parents of cancer patients experience a broad range of experiences and emotions when their children have cancer. Parents of patient might begin asking themselves why the disease had to happen to their families and look to no avail the causality of the misfortune. Therefore, uncertainty across the whole trajectory of the disease is an emotion experienced commonly, form diagnosis and its numerous unsolved questions, to putting more focus around the scope,success and content of treatment, to subsequently shifting off treatment and several other concerns with relation to potential treatment relapses (Faulkner et al., 1995).uncertainty and distress, have, however, been indicated to continueover the following years, even when active treatment and therapy has ended, the patient is in remission and the time referred to as survivorship has reached, there are longer term and broader future concerns about the patient (Faulkner, et al., 1995).

More to the point, other studies have indicated that parents at times blame themselves, something that is exceedingly common in mothers. Anger feelings can also result, especially when the need to blame other people manifests itself. Furthermore, research also shows that denial is a common reaction in which case individuals deny that the diagnosis is correct. In the light of such reactions and emotions, the significance of supporting and preparing parents and patients throughout the period of illness is clear. Research has shown the benefits and advantages of professionals talking about events in the future and treatment plans before they occur and providing their patients and the parents time to discuss and experience different emotions in an atmosphere devoid of judgements, with counselling and guidance as available options (Eiser et al., 1995).

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 has shown 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. Research indicates that 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 in research. Research shows that both sets of friends, cancer- related and non- cancer-related play an essential role in psychosocial support. 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 in research. Another study carried out in 1991 aimed at evaluating 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. A SMC in addition to an intervention was delivered by an APN nurse 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).

Another study 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. 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. 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 (McArdle, 1991).

Research shows that support groups are provided and availed to cancer patients at a number of treatment centres. However, the study found that support is more focused on a specific range of factors and groups, largely parents, teenagers, siblings and bereaved families. The study 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).

A study carried out recently indicated 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. 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).

The study indicated that some individuals diagnosed with cancer are more likely to access support and receive information. The report also pointed out that staff and patients felt that direct contact with support teams and professionals either during appointments or during callsimproved the experience of patients as it makes it possible for patients to share their concerns with the professionals and support teams. The study 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 report 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 more than four times more likely 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).

There are currently a large number of voluntary and statutory support organizations and cancer information organizations that provide a broad range of support services and information across the UK. Their common objective is to support individuals diagnosed with cancer and has led them to come up with a diversity of services including counselling, information, complementary therapies, help with transport and financial advice. As organizations that are independent, they are usually extremely efficient at identifying a problem and coming up with solutions to address each one of these issues. In most case, however, voluntary service work in isolation with other service providers like the statutory service providers and the possible synergies of partnerships and joint service provision are not usually realised. Although numerous informal and formal partnerships occur between the support and cancer information services in the region, Service Level Agreements between the statutory and voluntary sector could result to stronger alignment in service delivery to patients and carers across the cancer journey(Morris et al., 2001).

While many of the carers and patients will not need or want to access all services a particular cancer support group offers, most carers and their patients may have significant reason to contact at least one of the offers services available currently across the nation. As it follows, the establishment of Service Level Agreements for different kinds of services like welfare rights services, cancer information service, transport services and psychological support services, which are of a certain standard, could establish a network of support that benefits carers and their patients wherever they might be (Morris et al., 2001).

Another study pin- pointed gaps (usually perceived more than actual) in information including dietary advice, information for carers, guide that shows how cancer services work and the tasks of social care and health care professionals. More involvement, by social and health care professionals at the basic level , to establish, implement and review pathways, may provide a chance to up- skill workers and staff (mainly the general staff) in delivering of information to carers and patients. A process by which staff can indicate information and support access gaps as they occur is needed. Processes are also needed to make sure support and information needs are solved economically (like regional commissioning and where required, buying of information). Patients require certain support services, information and preparation when moving between specialities within trusts and trusts. It is essential that such information be more freely accessible to referring trusts (this might need staff up skilling in referring trusts or other centres of treatment to avail information on particular procedures)(Payne,Smith & Dean, 1999).

There are different kinds of support groups and services available or that should be available to cancer patients during therapy. One of these is the healthcare team. Most people find that during their period of treatment they get a lot of support from the health care professionals. This includes the hospital nurses, doctors and their GP (Manning & Dickens, 2007). This support might also include other professionals in the health care like social workers, occupational therapists and dieticians. Most patients feel anxious because of the need to access more information or to have their questions answered. In such cases, they rely mostly on their healthcare team to solve and address their concerns, as they can provide for them valuable information and answer the questions they might have. This helps in decreasing the patient’s anxiety. The nurses also work together with the doctors and they offer the patients and their families emotional support. In most cases, nurses can help with concerns, which they feel like they cannot express to their doctors and carers. They also are likely to have detains and contact information of the local support organizations and other valuable organizations that might be able to help in their recovery (Manning & Dickens, 2007).

Other than the health care teams, voluntary organizations and helpline services are also other essential sources of support and information. Several charities and voluntary organizations provide support and information for individuals with cancer and their families. In the UK for instance, such organizations and charities include Breast Cancer Care, Macmillan Cancer Support, Prostate Cancer Charity, Cancer Research UK and Lymphoma Organization. These voluntary organizations and charities usually have telephone helpline services where patients and their families can talk to the relevant health care professional who is knowledgeable and experienced in supporting cancer patients. For instance, the Cancer Counselling Trust offers cancer patients and their families telephone and face- to- face counselling. In most cases, the healthcare teams in hospitals like nurses and doctors have details of contact and specific information of the organizations, which might have the ability to help cancer patients (Manning & Dickens, 2007).

Support groups are also essential for cancer patients. There are several cancer support groups in various areas in the UK. Such groups may include those people who have cancer or they may be made up of individuals who have cancer and those who have been affected by the disease in some way. These support groups are at time led by healthcare professionals. Some support groups are made for certain cancer types while other groups are meant for all kinds of cancer (Manning & Dickens, 2007). These support groups are mainly indicate for those cancer patients who live alone, or those do not like talking to their caregivers and families about their emotions and feelings. Some of these patients find support groups extremely helpful and they create close association with the rest the patients in the support groups. In other cases, however, other patients might feel uncomfortable or embarrassed when sharing with other people about personal concerns and issues. In some cases healthcare professionals advice patients to go along to find out what a support group is like before deciding whether to become a member. If patients find that the group does not suit their needs then it is usually indicated that there are other ways to access suitable support for their needs(Manning & Dickens, 2007).

Some support organizations offer patients the opportunity to speak to a special professional or individual face- to- face, either in person or over the phone. In most cases, the bereavement support services operate this way. The doctors and nurses in the treatment centre should have all the needed information to contact the suitable support group for a specific patient’s needs. Currently, Internet support groups have also become significant. There are now numerous Internet support groups for people diagnosed with cancer. Most patients prefer these because they offer the option of remaining dormant and anonymous with the chance to read posts and emails of other members. These are especially essential because they help connect people with similar feelings and concerns from numerous treatment centres all over the world. They help patients feel less alone and help them know how to cope with their therapy and their disease (Manning & Quigley, 2002).

Counselling is another form of support service usually availed to cancer patients. At times, it is essential and it usually helps to talk to and share one’s concerns with a professional counsellor. Counsellors are trained professionals trained to help and listen to people and their concerns. Though they do not provide answers or advice to solve one’s issues, they help most patients find their own answers by letting them talk. When cancer patients talk directly to counsellors they get help to sort out their emotions and feelings and find ways to cope with them. This is extremely helpful especially if the patient is not able to discuss or talk about their feelings with other people. In most cases, doctors and nurses know of a number of counsellors and can help with their contact information (Manning & Quigley, 2002).

Clinical psychology is the other form of support service usually availed to cancer patients. Clinical psychologists are a significant part of a broader healthcare team who have the skills to help cancer patients deal with their emotions and feelings. They have skills to understand what patients feel and think, and how they are likely to behave in situations that are stressful like coping with cancer. They help dissipate distress by changing the patient’s way of thinking. Spiritual support is also critical during therapy and sickness. Hospital chaplains are available to help patients even when they are not religious. Most local religious groups have individuals who are capable and willing to offer practical help and support to patients in hospitals and at home(Manning & Quigley, 2002).

Conclusion

The diagnosis of a disease that is life threatening like cancer can give rise to unsettling and grave questions and concerns for patients. Some of the patients will seek to re-examine their beliefs, whether religious, philosophical or spiritual in nature. The needs for cancer patients for some support services are in most cases ignored or unrecognized by social and health care professionals. On the other hand, where care needs are acknowledged and recognized there is usually insufficient choice of individuals to whom cancer patients can turn for help and care. Staff with a broad range of responsibilities and roles in a number of settings should be sensitive to the needs of the cancer patients and their caregivers during treatment and even after the death of the patient, because it is only with the provision of support services that the experiences of the patients are improved.

References

Balen, R., Fielding, D. & Lewis, J. (1998). An activity week for children with cancer: who wants to go and why? Child: Care, Health and Development, 24 (2), 169-177.

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.

Faulkner, A. et al. (1995).When a Child has Cancer. London: Chapman and Hall.

Hunt, A. (1995). The paediatric oncology community nurse specialist: the influence of employment location and funders on models of practice. Journal of Advanced Nursing, 22, 126-133.

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.

Manning, D. & Dickens, C. (2007). Cancer Information Centres: Fixing parts cancer drugs cannot reach. European J Cancer Care 16: 33-38.

Manning D. & Quigley, P. (2002). Understanding the needs of people using a cancer information service in Northern Ireland. European Journal of Cancer Care 11 (2): 139-142.

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

Morris, M. et al. (2001). Informal carers of cancer patients; what are their unmet psychological needs? Health and Social Care in the Community 9 (6): 464-475.

Payne, S., Smith, P. & Dean, S. (1999). Identifying the concerns of informal carers in palliative care.Palliative Medicine 13 (1): 37-44.

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