Differentiated Approaches to Awareness Programs in the Cancer Care Continuum
As much as 40% of all cancer deaths can be prevented by avoiding known risk factors causing cancer(1). There is ample literature which suggests that measures like risk identification, prevention and early detection can help us achieve substantial control over the burgeoning burden of cancer. One of the predominant factors which are important to stimulate application of preventive measures is an aggressive health promotion intervention designed to increase awareness and to nurture informed perceptions in the populace. Promotion of cancer awareness is a common intervention which is taken up by cancer control programs.
There is a dire need to bring out a differentiated approach for promotion of cancer awareness in the community and to have provisions for monitoring the process and the outcomes of this construct. Each stage in the cancer care continuum brings with it unique challenges. This requires suitably molding both the content of an awareness program and the communication strategy to each stage for a focused approach and optimal results.
Role of Cancer Awareness
There are many models which can guide our understanding of health behavior. One of the highly reviewed and referenced models is the health belief model (HBM), which was originally conceived by social psychologists in public health arena as a way of predicting who would utilize screening tests/ vaccinations(2) . According to the HBM, the likelihood of someone taking action for preventing illness depends upon the individual's perceptions of:
- Susceptibility to getting a health condition
- Severity of the condition, its treatment, and associated consequences
- Overall effectiveness of the advised action to reduce risk or impact of the condition
- Cost to self in terms of how difficult an advised action will be, psychologically and otherwise
All these perceptions contribute to the development of awareness towards a health condition. It is important that the awareness generated is positive and leads to the required action. Research suggests that awareness about cancer symptoms and optimism about controlling cancer lead to good medical care behavior (3).
The Content Focus and Communication Strategies for cancer awareness in various phases of cancer care continuum
When managing cancer in the community, the information requirements have to be met to cover the entire spectrum of the cancer life cycle. The population will have individuals in all phases of the continuum– healthy, pre-cancerous, diagnosed, cancer survivors and patients under palliative care. The methods for content dissemination will vary from individualistic approaches to population-wide dissemination approaches, depending upon access to an individual, his awareness requirements and his emotional needs. The media for content dissemination will have to be carefully selected in order to reach the targeted audience, create maximum impact and meet the ethical standards.
Before Disease Diagnosis
The main themes for this phase are primordial prevention, risk assessment, primary prevention and screening. The content development should focus on problems faced by individuals during this phase viz. misconceptions regarding the etiology of various cancers, lack of education and knowledge about the perceived seriousness of symptoms, the associated risk factors and limited knowledge regarding the potential benefits of early detection in improving survival.
The individual is healthy or asymptomatic at this stage, so individual dissemination of healthcare information to create awareness is not possible. This phase thus heavily relies on mass campaigning and social marketing. Communication campaigns should be designed using persuasive communication strategies based on local social, cultural, and economic factors. The design process should include an analysis of the health beliefs and values of the target audience. The communication plan should focus on improving penetration and removing barriers to information access. The media has to be suitably selected after carefully analyzing the target audience and complexity of the message.
After Disease Diagnosis
The issues that are notable for this phase are cognitive aspects of facing cancer diagnosis for patient and family, the therapy itself and dealing with therapy-related side effects. A study reported that patients faced with diagnosis of cancer have a complex mix of reactions with depressive feelings like disappointment, fear, hopelessness and emptiness. There are phases of disease denial and reexamination in relation to past life experiences, stressful events and bad habits (4). The content focus for awareness is specific and would depend on the type of cancer, stage at diagnosis and the prognosis. It should include coping with early or advanced diagnosis of cancer, education of patients and relatives to make informed decisions related to ongoing cancer therapy and coping with the side effects.
In this phase a more focused approach to cancer awareness has to be adopted which will involve the patient and his close ones. Usually face-to-face conversation is the desired medium of communication to allow communication both at physical and emotional level. The key people who play the role in information dissemination and help the patient and family cope up with the condition are the healthcare professionals, including support psychologists. Community-based and online cancer support groups are also good platforms which can be used to help patients in coping with their condition.
Survivorship and Surveillance
Once the remittance has been achieved, there is a new set of problems which the patient faces as a survivor. These problems can be medical, like permanent side effects, the possibility of secondary cancers, the need for long-term treatment and medical follow-up. Other sets of problems are emotional or social challenges, like discrimination at the workplace, problems with health insurance, relationship changes and learning to live with the possibility of cancer recurrence.
This phase warrants a dual approach with interventions at community and individual levels. The community-based interventions like cancer awareness events create a supportive atmosphere in the community for cancer survivors and push for regulations against discrimination. At an individual level, use of personalized communication to help maintain long-term treatment and promotion of self-management is required.
End of Life Care
End of life care involves medical care of those with terminal illness and aims to make the patient as comfortable as possible. The communication in this phase is individualistic and should be governed by belief system of the patient and the family. An empathetic approach to deal with patient and family concerns about the end of life has to be adopted by the health care team. The communication should cover
- physical, social, psychological and spiritual aspects of patient care
- various options available for palliative care to help patient live as actively as possible
- counseling and support to help family cope during the patient's illness
- bereavement care
Measuring Cancer Awareness in the Cancer Care Continuum
In the cancer care continuum, there are many intersections where the patient should be given accurate information. This information translates into required perception so that the proper action can be taken at the right time. Following is an indicative framework which can be used to adopt a holistic approach towards measuring cancer awareness in the community. It includes the dimensions of cancer awareness assessment and outcomes measures for each phase. The assessment can be done with the help of questionnaires for various cross-sections of population in the form of sample surveys or accessing individuals at various touch points.
Measuring cancer awareness is important, as it gives the program administrators an opportunity to understand the impact of the interventions and do fine tunings in the structure and function to get the desired outcomes.
Promotion of cancer awareness has potential impacts on all the phases of cancer care. Each stage in the cancer care continuum requires a different approach towards awareness generation to be most effective. The awareness-generation process and outcomes should be monitored to evaluate the effectiveness of the interventions, so that appropriate adjustments can be made to improve cancer awareness programs.
WHO guide for effective programmes-Prevention. Cancer control : Knowledge into Action ; module 2. s.l., Geneva, Switzerland : World Health Organization, 2007.
2. Health Behavior Models. Colleen A., Redding, Joseph S., Rossi and Susan R., Rossi. 2000, The International Electronic Journal of Health Education, pp. 180-193.
3. Cancer awareness and secondary prevention practices in Black Americans: Implications for intervention. Bloom, Joan R., et al., et al. 1987, Family & Community Health: The Journal of Health Promotion & Maintenance, pp. 19-30.
- 4. Psychological aspects of the cancer patients' education: thoughts, feelings, behavior and body reactions of patients faced with diagnosis of cancer. Klikovac, T and Djurdjevic, A. 2010, Journal of the Balcan Union of Oncology, pp. 15(1):153-6.
About The Authors
Mufazzal is a Senior Consultant with Healthcare Consulting Practice of Infosys Public Services. He has 9 years of rich experience in the healthcare IT industry with expertise in disease management, diagnostic services and revenue cycle management
Dr. Sandeep Moolchandani MBBS, MHA
Sandeep is an Associate Consultant with Healthcare Consulting Practice of Infosys Public Services. He is a qualified physician with a Masters in Health Administration. He has been focusing on healthcare IT since past 2 years.