Counseling Psychology and Chronic Health Conditions: A Call for Action

Abstract

The authors support the assertion that counseling psychology expertise should be present at all levels of therapeutic activity that may benefit persons who live with chronic health conditions. They consider the impact of the increasing rates of chronic health conditions on health care systems, society, and health service professions. In order for the field to have an influential role in service delivery and policy formation that benefit individuals with chronic health conditions, the authors offer four recommendations: (a) Participate in, promote, and reward interdisciplinary research and service; (b) conduct, promote, and reward policy-relevant research programs; (c) promote and utilize participatory research methods; and (d) consider the implications of these activities for our training programs.

In the Major Contribution and accompanying articles (Maguire, McNally, Britton, Werth, & Borges, 2008 [this issue]; Werth, Borges, McNally, Maguire, & Britton, 2008a [this issue], 2008b [this issue]), Werth and colleagues recognize that counseling psychology has been traditionally responsive to issues that face our nation’s welfare. As we know, the Veterans Administration used the term counseling psychologist for the professionals best suited to provide psychological and vocational services for veterans returning from World War II with disabling conditions and other chronic health problems (Whitely, 1984). Using the personal, social, vocational, and health issues surrounding HIV as an exemplar, Werth and associates explain how individuals with chronic health conditions become disenfranchised and thwarted from full participation in meaningful activities of daily life. Finally, the authors observe that counseling psychology should assume a similar view of other individuals who are marginalized by their health conditions that limit their potential.

Werth and colleagues argue for an infusion of counseling psychology expertise at all levels of therapeutic activity to promote the health and well-being of persons who live with HIV. We heartily endorse this overriding theme: Counseling psychology should be involved at all levels of service provision for persons who live with chronic health conditions including the individual level (where traditional psychological programs occur) to structural interventions that target environmental and social factors that shape behaviors, dictate options, and “distribute people into risk groups” (Glass & McAtee, 2006, p. 1651). These professional activities are benefiting of our profession, and they require the infusion of counseling psychology expertise in the formation of health and public policy to rectify social inequities and promote a more rational allocation of health care and public services (Elliott & Klapow, 1997; Elliott & Shewchuk, 1996).

Following the lead of these of authors, we will discuss the current panorama of chronic health problems (of which HIV is a part) and the challenges these pose to our health care systems. We will then briefly discuss four major implications we see in the lead articles for counseling psychology research, practice and training.

CHRONIC HEALTH CONDITIONS: THE “EPIDEMIC OF SURVIVAL”

People with HIV can now live longer lives as a result of advances in medical treatment including highly active antiretroviral therapies and improved viral resistance diagnostic technologies. These advances in technology and intervention reconfigure HIV from a terminal condition to a “chronic illness.” However, HIV disease is characterized by substantial social stigma and by treatments whose benefits are often accompanied by short- and long-term toxicities and medication adherence requirements unparalleled by treatments for other chronic illnesses. Estimates of the lifetime costs associated with an HIV infection are as high as US$195,000 (Holtgrave & Pinkerton, 1997).

In many ways, this scenario illustrates the dynamic changes that now confront contemporary society: The number of people who live with a chronic health condition in our country has been steadily increasing over the past 50 years. In fact, for the first time in the nation’s recorded history, almost half of all Americans live with a chronic health condition—a condition that lasts longer than a year, limits a person’s activities, and may require ongoing medical care to manage symptoms—and almost half of this number has more than one condition (Partnerships for Solutions, 2004).

There are many reasons for this rapid increase. Emergency care and technologies have improved drastically (increasing the likelihood of survival following motor vehicle accidents, acts of violence, and other forms of trauma). Some diseases, such as HIV, stem from infectious processes, and others—like hypertension, heart disease, and diabetes—often have genetic predispositions that can increase susceptibility, and risk is increased by behavioral and social factors. Pharmacological interventions have had a radical effect on increased longevity of life, permitting individuals to manage their symptoms and curtail disease progression. Similarly, advanced medical technologies have increased the life expectancy of persons with acquired and congenital physical disabilities.

The costs to our society are enormous. People with chronic health conditions account for two thirds of prescribed medications, and they have the highest hospitalization rates and office visits (Partnerships for Solutions, 2004). In 2001, the care they received accounted for 83% of all health care expenditures. Individuals with multiple chronic conditions account for 96% of Medicare expenditures. And it should be noted that the majority of persons with chronic health conditions are of working age (younger than 65 years of age; Partnerships for Solutions, 2004).

Regardless of etiology, behavioral and social mechanisms have the greatest influence on the ultimate health and well-being of these individuals (Israel, Schulz, Parker, & Becker, 1998). Unfortunately, our health care systems— and these include our everyday professional activity—maintain operations that are designed to provide and reimburse acute and episodic care, with little recognition of the ongoing social, environmental, and institutional issues that can limit participation and compromise health. Although we are aware of the behavioral mechanisms that influence health outcomes among people with chronic conditions, our existing programs are not designed to provide ongoing, community-based assistance that fully embraces the reality that an individual’s lifestyle and day-to-day choices—and the immediate social factors that influence these behaviors—have more impact on the course of their health than the service offered by any single health profession (Glass & McAtee, 2006).

Our health care systems have been overwhelmed by the sheer number of persons who present with chronic conditions and their accompanying behavioral and social needs (which may extend over the course of a lifetime) and with the complexity of managing multiple symptoms across primary and specialty care. This dilemma has been called the “epidemic of survival” (Oeffinger, Eshelman, Tomlinson, & Buchanan, 1998) as these individuals find themselves vulnerable to mismanaged, poorly coordinated care (in which services are fragmented into professional specializations) and a lack of services for their ongoing social and behavioral concerns. In sum, contemporary health care programs cannot meet the array of demands placed them by this demographic, and our payment systems—both public and private— cannot financially support traditional modes of episodic care in any rational, cost-efficient fashion to adequately assist these individuals beyond emergency care and basic medical management (Partnerships for Solutions, 2004).

COUNSELING PSYCHOLOGY AND THE CALL FOR ACTION

In the introductory article, Werth et al. (2008b) present cogent arguments why counseling psychology should attend to the behavioral and social issues associated with HIV. Embedded in their arguments, we find four overarching implications for counseling psychology research, practice, and training. The following points should be seriously considered in order for counseling psychology to have an influential role in benefiting persons who live with chronic health conditions like HIV.

1. Participate in, Promote, and Reward Interdisciplinary Research and Service Activities

The Major Contribution illustrates the value of interdisciplinary research. The National Institutes of Health have made interdisciplinary knowledge an explicit priority, because traditional reliances in terminology, methodologies, and services—defined by and promulgated within professional boundaries— create gaps in our knowledge base that undermine attempts to develop well-informed health and public policy (Aboelela et al., 2007). Interdisciplinary research requires an integration of “the analytic strengths of two or more often disparate scientific disciplines” (http://nihroadmap.nih.gov/interdisciplinary/index.asp) to address the complex issues facing our society. Our best interventions to date can promote changes in health behaviors and lifestyles at the individual level (Glass & McAtee, 2006), but our expertise has been underutilized in addressing the social factors that shape the contexts in which these behaviors occur.

To a certain extent, counseling psychology has placed artificial limits on our involvement. For example, we are quick to assume that colleagues with specialization in rehabilitation counseling or rehabilitation psychology are the ones most qualified to provide psychological services to an individual, who by virtue of a medical diagnosis, has a “physical disability.” “Disability” is then considered in terms of a specific medical diagnosis and, thus, relegated to the professional services of a certain medical or psychological specialty with expertise in the issues associated with the diagnosis. Olkin has criticized this assumption as a professional “ghettoization” of persons with disability, as it effectively circumscribes the services that could otherwise be available to these individuals (Olkin & Pledger, 2003).

The use of the term disability as an explanatory concept also perpetuates a lack of awareness of the environmental and social factors that impose activity restrictions and effectively “disable” a person with a chronic health condition such as HIV. This oerly simplistic construal will be ameliorated to a great degree by the International Classification of Functioning system developed by the World Health Organization, in which environmental, personal, and social factors receive greater weight as factors that impose disability and thwart full participation in societal roles, and the explanatory nature of the medical diagnosis is diminished (Lollar & Crews, 2003; Peterson & Elliott, in press).

Vocational psychology research and career development theories have not fully incorporated the multiple behavioral and social concerns of people who live with chronic health conditions. This is addressed, in part, by the Maguire et al. (2008) and Werth et al. (2008a) papers. Adults who acquire disabilities usually have crystallized interest patterns that developed well within the processes described by career development models applicable to people in general, and in other conditions, neurological damage may severely limit or obviate preinjury interest patterns and values (Elliott & Leung, 2005; Szymanski, 2000). Interdisciplinary research has developed effective job placement strategies for people with severely disabling conditions (including neurological disability and chronic psychiatric problems). In fact, supported employment interventions are considered one of few evidence-based practices available in vocational rehabilitation, including at least eight successful clinical randomized trials to date (Bond, Becker, et al., 2001). However, the research concerning supported employment has appeared in a wide range of journals, none of which are traditionally considered part of the “counseling psychology” literature (e.g., Journal of Consulting and Clinical Psychology, Bond, Resnick, et al., 2001; Archives of General Psychiatry, Drake et al., 1999).

For counseling psychologists to contribute to research, policy, and service delivery in the context of chronic illnesses such as HIV disease, the field must be open to learning from and working with other disciplines as the lead articles attest. The landscape of HIV changes quickly; demographic trends in new infections are on the rise in racial and ethnic minority communities, new medications are approved every year, and more medications are in the developmental pipeline. There is a vast array of literature from multiple disciplines that can inform the work of counseling psychologists. Medicine, sociology, anthropology, behavioral medicine, nursing, law, social work, epidemiology, public health, and pharmacology all have information and experience to strengthen the role of counseling psychology in HIV and other chronic illnesses.

2. Conduct, Promote, and Reward Policy-Relevant Research Programs

In the lead article, Werth et al. (2008b) argue that counseling psychologists should attend to matters of social injustice that compromise the quality of life of those who live with chronic health conditions. We share their interest in social justice. In our opinion, however, counseling psychology has yet to appreciate the ways research can inform health and public policies. With the increasing focus on stated national priorities, counseling psychology “must develop the expertise within our training institutions to effectively engage the public policy (i.e., political) process” (DeLeon, Dubanoski, & Oliveira-Berry, 2005, p. 1106). Ideally, public policy is chiefly concerned with “large-scale behavior change to address social problems” (McKnight, Sechrest, & McKnight, 2005, p. 559). Psychological science can be used to inform and direct decisions about meaningful policy.

From our perspective, counseling psychology does not routinely pursue, conduct, or reward policy-relevant research, and many counseling psychologists may have difficulty understanding what types of knowledge may be relevant and useful to policy makers. There are often gaps between “what public policymakers need to know and what social scientists study” (McKnight et al., 2005, p. 568). There is lingering concern that such gaps may be pronounced for counseling psychology: Policy-relevant research is typically associated with federally funded grant projects. Articles appearing in journals associated in the counseling psychology knowledge base report a rate of grant funding from national agencies disproportionately lower than that observed among outlets associated with social, clinical, and health psychology (Elliott & Shewchuk, 1999).

Counseling psychologists study many issues and activities of great value to policy makers, but this work is often circumscribed to university settings and populations that do not readily translate to community-based research. On the surface, such work does not address stated national priorities. Other disciplines have incorporated key concepts from the counseling psychology literature and applied them in policy-relevant research endeavors with the support of federal grants. For example, self-appraised problem-solving abilities have been used in large-scale, interdisciplinary studies to predict adherence to HIV medications (Johnson, Elliott, Neilands, Morin, & Chesney, 2006) and in developing interventions across health care settings to promote the health and well-being of individuals who live with a chronic health condition (Nezu, 2004). Elements of problem solving, goal setting, and coping skills training are currently featured in a community-based, multisite clinical trial designed to promote adherence and well-being among persons with HIV (the Healthy Living Project; Gore-Felton et al., 2005).

Counseling psychology expertise may be particularly useful in advancing the research and policy agenda among persons with HIV, as Werth and colleagues assert. There is much for us to learn about the mechanisms of positive behavior change among these individuals, and many confusing and circular relationships exist in the links between well-being and employment among persons with HIV (e.g., Burns, Young, & Maniss, 2006). To enrich the knowledge base, however, counseling psychologists should have a firm grasp on the theoretical and conceptual models that have already appeared in the relevant interdisciplinary literature. Public policy is best served by basic principles that emerge from systematic research programs, rather than specific, unique findings from isolated studies (McKnight et al., 2005, p. 562).

3. Promote and Utilize Participatory Action Research Methods

Maguire and colleagues (2008) provide a voice to the persons with HIV and their personal experience in returning to work. Although the article fails to integrate much of the relevant research literature that has previously been published on this topic, it nicely illustrates the need to use community-based, participatory action research methods to collaborate with individuals who live with a particular health condition (Kidd & Kral, 2005). These methods— which can encompass qualitative techniques such as focus groups, surveys, and interviews—are used routinely to identify the needs of these individuals, to incorporate their input in the development of relevant research questions, and to evaluate findings from research projects. Many funding agencies expect this level of collaboration with populations under investigation, as it represents a needed shift away from a paternalistic perspective of health care delivery to one that promotes a “participatory ethic” (Mechanic, 1998, p. 283). This ethic is considered essential in developing collaborative partnerships with people who live with chronic health problems, as it recognizes and seeks to empower their active role in their ongoing health and well-being (Israel et al., 1998). At first glance, these approaches may seem antithetical to the high premium counseling psychologists place on theory development and refinement, but interdisciplinary research programs have demonstrated that these methods can be used to develop research questions that may be addressed with theoretical perspectives.

4. Training Implications

Finally, we believe the papers by Werth and colleagues raise issues that are germane to our training models. We contend that counseling psychology— like other practice professions in psychology—is a health care profession, providing services that benefit the health and well-being of persons in traditionally defined areas of practice (e.g., undergraduates in a counseling center) and of community-residing individuals who live with chronic health conditions. To achieve this great potential, our training programs need a broader perspective of the theoretical and practice opportunities among this population, embracing community-based intervention techniques and programs, expanded views of diversity (that encompass disability and chronic disease), and the strategic applications of counseling psychology knowledge in health care delivery systems and in health and public policy (Snyder & Elliott, 2005).