Community Based Organizations are critical partners in providing complete cancer care

Robert Rutledge

Abstract


Byline: Dr. Rob Rutledge is a full-time radiation oncologist and associate professor at Dalhousie University in Halifax. He is co-founder of ‘Healing and Cancer’ a charitable organization dedicated to empowering people affected by cancer and has facilitated over twenty weekend cancer retreats across Canada. Lynne Robinson, PhD, is an associate professor in the School of Health and Human Performance at Dalhousie University and a specialist in health promotion.


In the last decade, Canada has witnessed the successful development of dozens of organizations dedicated in part or wholly to fulfilling the psychosocial needs of people affected by cancer. These Community Based Organizations (CBOs) were created to fill the perceived gap in whole-person care currently not filled by the medical system. The purpose of this article is to overview how the CBOs currently contribute to complete cancer care and to outline a vision of how a true partnership between the CBOs and the medical system could better serve the growing number of cancer survivors.

History and Methodology

In 2006 the Board of the Canadian Association of Psychosocial Oncology (CAPO, a group representing professional psychosocial specialists) invited leaders from eleven Community Based Organizations (CBOs) to an exploratory meeting regarding the development of partnerships in psychosocial cancer care. The perception leading up to this meeting was that patients and families often seek psychosocial support from the medical system and/or the CBOs but there is little communication and coordination of services between these two providers. The consensus from this meeting was that there is a need to develop a mechanism to share information such as program availability, psychosocial research findings and best practices as well as developing common standards for educational materials. A vision arose of providing seamless high-quality psychosocial oncology care by developing a partnership of the medical system, psychosocial professionals, and CBOs through knowledge exchange and capacity building and, where appropriate, informed by psychosocial research (see diagram).

In 2007, through grants provided by the National Cancer Institute of Canada and the Canadian Institutes of Health Research, a workshop entitled “Creating a Community for Knowledge Exchange and Capacity Building in Psychosocial Cancer Care” was organized. The workshop was later named Canadian Psychosocial Oncology Partners (CPOP) by the workshop participants. In preparation for the workshop an environmental scan of the knowledge exchange practices of the CBOs took place. Of the fourteen Canadian CBOs approached who provide psychosocial oncology services, thirteen agreed to a taped interview (see list below). The results of this study were analyzed using thematic analysis and the entirety of the findings will be published elsewhere. The results of this study are a) CBOs strongly endorsed a system to exchange knowledge in psychosocial oncology and, b) a central, online database was key to sharing information (although personal exchanges were felt to be very helpful as well), c) the content of the information to be shared included all aspects of service delivery, ways to efficiently share information with target audiences and application of research to practice.

The inaugural workshop occurred in May 2007 and was attended by ten health care professionals, five health researchers and 16 representatives from CBOs. The intent was to develop a community of practice in psychosocial oncology. A community of practice simply means developing a process for individuals with common interests to share their expertise. The primary task identified by the workshop attendees was to develop an on-line portal or clearinghouse to facilitate the development of this community in order to enhance capacity for psychosocial oncology knowledge exchange. The second CPOP workshop occurred in May 2008 and involved thirty people representing the CBOs, the medical system, researchers and psychosocial professionals. This workshop further developed this community of practice and was charged with the task of developing an online mechanism to further the group’s goals.

The knowledge gained from the 2007 interviews with CBO leaders provides the basis for the opinion provided in the following section on complete cancer care.

How do Community Based Organizations contribute to delivering complete cancer care?

A list of the essential components of complete care follows. The list is neither completely comprehensive nor would we expect every patient/family member to avail themselves of every type of service. The vision is that every person affected by cancer, whether they be the one given the diagnosis or a family member/friend, should have access to these types of programming and that we, with the larger community (inside and outside the medical system), should help guide people towards the programming and services most suited to their needs.

1 – Information – Helping people understand their cancer experience is imperative. The topics of information span from defining what cancer is, its treatment, how the medical system functions, to their role and responsibility in their own health and health care delivery, and onto every other of element of complete care listed here. Understanding what’s happening decreases anxiety, improves the quality of the interactions with the medical system, and is critical in preparation for every visit with professional team member.

Ultimately, the medical professionals are in the position to best help patients/families make sense of their situation, inform patients about treatment options, and further tailor the types of information they believe will be most helpful for each individual. All of the CBOs interviewed were emphatic they do not provide medical advice but are able to help facilitate the process of information seeking. The medical system does provide almost all of the information provided by CBOs through one-to-one contact with patients at every visit ensuring patients’ access to print materials, medical system websites, library resources, additional public information sessions and patient navigators among other knowledge translation strategies.

However, CBOs are also in a unique position of empowering people with knowledge in ways not offered by the medical system.
a) Patients often want to gain more information during non-working hours. Many CBOs offer toll-free numbers available into evening hours and on weekends. Furthermore, some CBOs offer access to information specialists in multiple languages.
b) CBOs often act as knowledge brokers. They can arrange for information to be packaged / provided in a medium customized to each individual’s learning needs, for example, by sending patients electronic documents or print materials. The CBOs can also direct people to medical information services such as hospital libraries provided by the medical system.
c) CBOs are highly motivated to help with prevention and early detection of cancers (through promotion of screening programs) and, as such, can promote public health messages. CBOs can raise the awareness of health promotion and cancer prevention in ways that far exceed what the medical system could accomplish alone.
d) One concern from the perspective of the medical system is that CBOs may be providing outdated or invalid information. Critics point to the absence of national standards for educational materials and that the lay public cannot easily evaluate the quality of information provided by the community. The CBOs are acutely aware of this issue and highly motivated to provide the best possible information. Of the 13 national organizations interviewed, all vet their material through medical experts, and train their staff drawing on the same up-to-date databases as used by the medical system.

2 – Negotiating the medical system includes preparing for medical visits, advocating for oneself when necessary, and drawing on other services offered by the medical system such as nutrition, psychology, rehabilatory medicine and many others. Patients and family members are not passive recipients of physical care – their understanding of and participation in that care clearly influence the quality of care patients receive. And yet this fact remains obscure to both many professionals and the lay public. Effective negotiation of the medical system requires patients and families not only to assimilate information about their situation but to draw on a skill set and attitude about their role in care.

The CBOs draw on the extensive experience of their members and play a critical role in teaching these essential negotiating skills in a variety of ways, including, importantly, support groups. The power of support groups, beyond emotional/psychological support, is that people with similar problems can share specific advice and practical solutions. Attendees learn about symptoms, medical care options and available resources. The CBOs arrange for people with the same tumour type, or other characteristics, to interact through support groups, information days, online resources, and buddy systems, etc. This sharing of experience allows people to develop effective strategies in coping with treatment related problems, drawing on the appropriate resources, and demystifying the medical experience. The CBOs can provide an honest assessment of the medical system’s ability to provide care outlining both its strengths and weaknesses– an opinion that members of the medical system are reluctant to provide for various reasons.

3 – Physical Care – Surgery, systemic therapy, and radiotherapy. This is the only element of complete care in which the CBOs have no direct role.

However, anecdotally, it is also possible CBOs have some influence in affecting the types of care being provided. CBOs can help lobby governments to provide access to certain types of care (usually expensive). CBOs can act as knowledge brokers to disseminate up-to-date, professionally created, guidelines on the medical management of tumours. This may be particularly helpful for rare tumours or in situations in which recent medical breakthroughs have not been disseminated widely. For instance, the standard of care for thyroid cancer has evolved over the years, and so there is likely a lag between recent developments in standard of care and uptake by the professionals. Regardless of whether there are gaps in the quality of care in Canada, patients can feel more reassured if they feel they are exploring all their treatment options with information provided by a party outside of the medical system.


4 – Physical Health Promotion. The scientific literature has begun to show exercise, a healthy diet, maintenance of a reasonable weight, sleep, and relaxation techniques can, in some cases, influence cancer outcomes. This information is reaching the medical community who are increasingly educating their patients about the benefits of physical health promotion. But informing people about what’s best for them is much less effective than developing and delivering an integrated health promotion program run by highly trained staff. The latter is rarely delivered in the Canadian medical system perhaps with the exception of some breast cancer support programs. This is unfortunate as people who develop an active coping strategy often have a better quality of life than those who take a passive approach.

The CBOs are highly attuned to the patient perspective and want to help people to focus their energies in helpful ways. Beyond promoting the message through multiple media, CBOs can actually provide the programming itself. Whether through partnership with university or community exercise specialists, arranging cooking classes, or teaching relaxation techniques, the CBOs vastly increase capacity to deliver effective health promotion programs. The greater than one million Canadian cancer survivors themselves provide an urgent, significant source of volunteers who can help organize and lead the newly diagnosed to a healthier life.


5 – Psychological Care. Supporting cancer patients and families at the emotional and psychological level is multifaceted and is not separated from all other components of complete cancer care outlined in this article.

Psychological care can be categorized by the distress level of the person in need. Those people who are most distressed – the one in three patients who suffer clinical depression or debilitating anxiety at some point in their cancer journey - need to be referred to a trained professional. Those suffering less distress can benefit from professionally-led psycho-educational support groups. People can also learn specific self-help skills for coping with difficult emotions and other stress-reduction techniques. These programs are offered by the medical system to some degree. Unfortunately, the budget for psychosocial care in Canada is very small – on average about 3% of the operating budget. Psychosocial professionals are often so busy taking care of the most distressed clients they have very limited time to lead other programs. This is despite the fact that providing psychological care has been found to be a cost-saving initiative in dealing with a variety of other health problems, such as arthritis, chronic pain, heart disease. In Alberta, women with breast cancer who participated in a psychological treatment group billed an average of $221 less over two years than women in control conditions, according to researchers Simpson, Carlson and Trew.

Regardless of the level of distress, psychological care should be available with every interaction with people affected by cancer. Cancer can be an extremely stressful and often isolating experience. Most people welcome the opportunity to discuss their experience and studies show simply listening to patient and family members has a therapeutic effect. At a societal level, we need to normalize the emotional experience for the newly diagnosed. Medical professionals have limited capacity to provide this basic form of psychological care as they are often under time constraints and may view their primary role as delivering physical care. Furthermore, the medical system appears appropriately reluctant to ask patients to act as volunteers’ buddies’ for newly diagnosed patients. Issues of patient confidentiality and not wanting to burden patients in any way likely lie at the heart of this concern.

But in the realm of providing psychological care, CBOs are indispensable. Patients and families can instantly make contact with others who have travelled a similar journey. The CBOs tap into a large network of survivors who are motivated to give back to their community. This is especially helpful in rare tumours and in under-serviced populations like young adults. The evolving technologies such as chat-rooms and websites like ‘wiki-cancer’ where people can post their own story and make themselves available to others with similar problems mitigates against feelings of isolation in the newly diagnosed.

Furthermore, the CBO staff and volunteers, often themselves cancer survivors, make time to listen to each and every person’s story. Often the patients will describe an instant bond with someone who really ‘gets it’, a role professionals, let alone family members, can never fulfill. Most patients feel stressed visiting the cancer centres so having programs available in the comforting environment provided by CBOs is also beneficial. As with other elements of cancer care, the capacity to provide psychological programming is markedly increased with the involvement of the CBOs.

6 – Finding meaning and purpose. Many people will see the cancer diagnosis as an opportunity for personal growth. Others will find purpose in volunteering, fundraising or supporting those who are recently diagnosed. Providing a way for people to find purpose in their cancer experience is therapeutic and a pillar of complete cancer care.

The medical system simply has provided a very limited opportunity for survivors to contribute their energy, expertise and experience (beyond financial donations). The CBOs are the catalysts in converting this innate human tendency to give into concrete programs adapted quickly to the needs of others. The fundraising events, information days and chat rooms have benefits far beyond providing practical and emotional support of the newly diagnosed. They are in fact a therapy unto themselves for everyone involved. And for those who want to explore their spirituality, the CBOs offer programs which have been well-evaluated and help people find peace on their cancer journey.

The influence of Community Based Organizations (CBOs) in Canada

The current popularity of the CBOs in Canada is testament to the value of the services they provide. Different types of organizations serve the perceived (and evaluated) needs of their clientele. Although the largest organization, the Canadian Cancer Society, funds clinical trials and research, its role in providing psychosocial care is very impressive. An estimated 65,000 people access the CCS Cancer Information Service (CIS) every year, at no cost, by phone (90% of all contacts) or by email (10%). Assuming one new cancer case per inquiry would imply that an estimated 15%-18% of new cancer patients, or people close to them, contact the CIS each year. (Canadian Cancer Society CIS Statistic Report 2007-08). The CCS website gets more than 11, 000 visits PER DAY – a third of those in the ‘about cancer’ section and about 900 visits a day in the ‘support services’ section alone. Each year the Cancer Society’s ‘Cancer Connection’ service matches each of over 7000 clients with a trained volunteer with a similar diagnosis. The evaluations of these programs show that over 95% of their clients are very satisfied or satisfied with their services (Centre for Behavioural Research and Program Evaluation’s surveys of CIS and CancerConnection for the Canadian Cancer Society ). The extent of the programs provided by the Cancer Society extends far beyond these services into each provincial program and the dozens of regions and unit offices throughout the country.

An example of a national organization that caters to an underserved population is Young Adult Cancer Canada whose mission is to serve the young adult cancer community. Although only marketed to the national community, the program links this techno-savvy group with innovative programs through their website, outreach programs, and help line.
Young Adult Cancer Canada’s websites receives 152 000 visits annually.

A growing number of CBOs are comprised of facility-based programs. For instance, Wellspring is a network of wellness centres set in the community. Typically, residential properties are renovated to create a warm and welcoming environment away from the hospitals and clinics. Beyond impressive information services and professionally led support groups / counselling services they offer over 28 programs such as yoga, relaxation classes thus fulfilling the expressed needs of their ‘members’. Each program and centre is rigorously evaluated by their clients, allowing Wellspring to evolve quickly and respond effectively to more than 40,000 visits per year from patients and caregivers across the Wellspring network.

InspireHealth is a Vancouver-based organization which demonstrates a truly integrative approach to cancer care. What’s unique is that medical physicians are provided with provincial government funding to offer a complete set of integrative services – coaching people on how to choose the traditional therapies, such as Chinese-based medicine. Six hundred new patients are served each year. Their website, which includes, amongst its many features, a compilation of the best scientific studies on complementary therapies sees over 110,000 hits per year.

Conclusion: Time for collaboration

Dozens of organizations exist to provide free support to multiple other patient groups. The time has come to recognize the incredible contribution, both in quality and quantity of care provided by these Community Based Organizations. It is no longer acceptable to expect that patients and family members should have to negotiate through two different systems of care. We need to collaborate and to learn from each other. Everyone coming in contact with the cancer population ought to refer the most distressed patients to the professionals, and those in the medical system ought to refer their patients/families to the CBOs. For their part the CBOs will need to continue to evaluate and modify their programs with the rigour of a research-based program. High-quality seamless psychosocial care, informed by up-to-date research, and guided by wisdom is in everyone’s interest.

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DOI: http://dx.doi.org/10.3747/co.v16i2.357






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