Feature Article: Shifting Sands: Changing the Way We Think About Practice
Pat Dorsett, PhD and Patricia Fronek, BSW
Abstract
Social workers and psychologists can play an important role within the wider interdisciplinary team by ensuring contemporary research findings are translated into daily practice. Despite shifts in knowledge found in contemporary literature, new understandings are not always translated into daily practice. Health care professionals tend to anticipate more negative consequences of psychosocial adjustment to SCI than is necessarily experienced by individuals themselves. This has implications for effective clinical interventions. This practice issues paper aims to present current research finding which debunk seemingly persistent myths surrounding adjustment to SCI, and to consider strategies for bridging the research/practice divide.
Introduction
The impact of the psychological and emotional issues confronted by people who sustain spinal cord injuries (SCI) cannot be underestimated. Health care professionals, however, tend to anticipate more negative consequences than are actually reported by individuals with SCI. In practice, practitioners respond to people in ways that perpetuate these misconceptions (Bodemhamer, Achterberg Lawlis, Kevorkian, Belanus, & Cofer, 1983; Cushman & Dijkers, 1990; Gerhart, Koziol McLain, Lowenstein, & Whiteneck, 1994). The authors were recently confronted by the content of a discipline-specific practice forum for critical care nurses. The forum, on the subject of adjustment to SCI, focused on the inevitable negative consequences of traumatic SCI, based primarily on outdated stage theories. The education content failed to incorporate contemporary understandings of adjustment to SCI and, as a consequence, perpetuated outdated beliefs and practice interventions for frontline professionals.
In practice settings, these beliefs often persist despite new understandings drawn from current SCI research. Most SCI units reflect a staffing mix of interdisciplinary health care professionals who range in experience from recent graduates to those who have many years experience. Where professionals are primarily influenced by discipline-specific training and maintain different perspectives and understandings of adjustment issues, myths can be perpetuated. Despite the best intentions, day-to-day ward-based demands often override opportunities for the dissemination of recent research findings to the wider team. The perpetuation of established myths that are not challenged leads to miscommunication within interdisciplinary teams and ultimately diminished outcomes for individuals with SCI.
Social workers and psychologists play an important role within the interdisciplinary team in critical care, rehabilitation and community settings. Knowledge of psychosocial adjustment and skilled clinical interventions can assist the team to navigate the shifting sands of knowledge expansion. This journey can be uncomfortable and sometimes confronting, especially for professionals who have extensive experience and practice knowledge. The challenge for social workers and psychologists is how to best facilitate the incorporation of contemporary research findings into practice frameworks. This article on practice issues presents findings from contemporary research which debunks seemingly persistent myths surrounding adjustment to SCI and considers strategies to bridge the research practice divide within the interdisciplinary team.
Myth 1 Depression
Depression is an essential stage of successful adjustment and it is inevitable that persons with SCI will become depressed.
Depression is the most commonly explored psychological response to SCI, particularly in the early literature where it was assumed that all individuals with SCI would inevitably experience a depressive stage and adjustment difficulties (Bracken & Shephard, 1980; Stewart, 1977-78; Wittkower, Gingras, Merler, Wigdor, & Lepine, 1954). Methods used to assess depression in many of the early studies relied on subjective clinical impressions of staff or the person’s self-report of mood. The validity of these methods has more recently been called into question and replaced by more reliable and valid methodologies. (Bodemhamer et al., 1983; Cushman & Dijkers, 1990; Krishman, Glass, Jackson, & Bingley, 1988). Traditional stage theories contended that depression was an essential factor in a linear staged process of adjustment and that failure to experience depression was predictive of pathological adjustment (Elliott & Frank, 1996; Trieschmann, 1988). Since the 1980s research clearly demonstrates that, while the rate of clinical depression in the early stages following SCI is higher than in the general population, it is not a universal or inevitable consequence (Frank, Elliott, Corcoran, & Wonderlich, 1987; Howell, Fullerton, Harvey, & Klien, 1981; Judd, Burrows, & Brown, 1986; Judd, Stone, Webber, Brown, & Burrows, 1989; MacDonald, Nielson, & Cameron, 1987; North, 1999).
Contemporary research indicates that stage theories contribute little to understanding the dynamic and interacting nature of the psychosocial and environmental factors that mediate adjustment (Dorsett & Geraghty, 2004). When applied to practice, faulty theoretical assumptions that premise therapeutic interventions can only undermine the effectiveness of those interventions. Despite the discounting of stage theories in contemporary literature, these theories continue to strongly influence contemporary rehabilitation practices with negative consequences for people with SCI (Trieschmann, 1988).
In contrast to earlier beliefs, research indicates that depression may in fact contribute to problematic adjustment outcomes rather than positive adjustment processes. Depression has been linked to decreased functional outcomes and higher levels of mortality and morbidity as well as lowered adjustment scores, decreased levels of social activity and employment, reduced mobility, longer rehabilitation periods, and increased costs to health systems (Fuhrer, Garber, Rintala, Clearman, & Hart, 1993; Fuhrer, Rintala, Hart, Clearman, & Young, 1993; Krause, Sternberg, Lottes, & Maides, 1997; Malec & Neimeyer, 1983; Tate, Forchheimer, Maynard, & Dijkers, 1994; Umlauf, 1992; Umlauf & Frank, 1987). Thus, depression does not play a functional role in the adjustment process but rather contributes to diminished quality of life and health-related problems and is, in fact, counterproductive (Judd, Paulus, Wells, & Rapaport, 1996).
Theoretical approaches found in the field of positive psychology, in contrast, focus on strengths and the redefinition of personal meaning instead of pathological affective responses. This focus provides new insights into coping processes with practical applications for therapeutic interventions. The presence of hope, optimism, problem solving and goal setting skills are in fact more predictive of quantifiable positive adjustment outcomes for people with SCI (Elliott, Kurylo, & Rivera, 2000, 2002; Elliott & Sherwin, 1997; Elliott, Witty, Herrick, & Hoffman, 1991; Fine, 1991; Kennedy & Rogers, 2000; Snyder & Rand, 2003; Snyder, Sympson, Michael, & Cheavens, 2001; Taylor, Kemeny, Bower, Gruenwald, & Reed, 2000). Qualitative research findings highlight that these approaches are more consistent with perspectives held by people with SCI (Dorsett, 2004a). Thus, clinical interventions that focus on coping strengths rather than pathology, are more therapeutic and contribute to enhanced psychosocial and health outcomes.
Myth 2 Quality of Life
SCI is so devastating that negative consequences for the person with SCI are inevitable. Living with SCI means a poor quality of life.
The myth of poor quality of life is sustained by a common belief held by health care professionals that life with SCI would not be worth living. A study of emergency workers, for example, reports that only eighteen percent could imagine that they would be glad to be alive following a severe SCI. This is in contrast to ninety-two percent of people with SCI who reported they were glad to be alive even after sustaining SCI (Gerhart et al, 1994). This bias pervades western society and these assumptions inevitably influence the approach professionals have towards people with SCI. (Dijkers, 1996; Gerhart, 1997; Gerhart et al., 1994; Hammell, 2004; Zandrow, 2001).
It is generally accepted that people with SCI are not a homogeneous group. No individual is exactly like another and each person responds to SCI in way that is unique (Gallagher & MacLachlan, 1999). There has been much controversy surrounding the definition of quality of life and how to measure it. The definition of measurement has moved from a set of predetermined health-related indicators to a measurement of perceived well being (Dijkers, 1997; Hammell, 2004). Each individual has diverse social and environmental contexts which in turn impacts on their perceived quality of life. Consequently people respond in individualized ways to SCI. A person’s perception of quality of life is, therefore, subject to a complex and dynamic interchange of factors such as the disability itself; interpersonal and intrapersonal characteristics such as social context, pre-morbid personality, health status and functional ability; the environment which includes social supports and cultural background; available resources such as finances, access, transport and vocational options; and socio-political aspects (Dorsett, 2001; Garske & Turpin, 1998; Harvey, 1996; Livneh, 2001; Oliver & Sapey, 1999; Trieschmann, 1988).
Severe sudden-onset disabilities such as SCI do not necessarily impact negatively on subjective well being or quality of life in the longer term (Boswell, Dawson, & Heininger, 1998; Dijkers, 1997). A ten-year longitudinal study found that most people with SCI reported a high level of life satisfaction that remained relatively stable for a decade (Dorsett, 2004b; Dorsett & Geraghty, 2004). The disability itself was not perceived by people with SCI as a major constraint to life participation and satisfaction in this study. The highest levels of satisfaction were found within the domains of family relationships, general health, perceived control over life, and social support. Life opportunities, access to recreational pursuits, and emotional adjustment were identified as minor issues (Dorsett, 2004b).
It is important that health professionals are aware of the impact their own beliefs have on clinical interventions and attitudes towards people with SCI. It is, therefore, crucial that we are familiar with contemporary research outcomes in order to provide accurate information and effective clinical services (Hammell, 2004). The implications of this research for clinical practice shifts the focus from those domains that professionals consider most important to those that the people with SCI tell us are of more relevance to their life satisfaction and capacity to re-engage in social roles. The challenge is to incorporate clinical interventions which focus on the maintenance of formal and informal social support networks, the removal of barriers, and capacity building in the areas of hope, goal setting and problem solving.
Myth 3 Unrealistic Hope
Unrealistic hope must be dispelled to assist the person to come to terms with the disability. “I will walk again!” is but a statement indicative of the non-acceptance of disability or of poor adjustment.
According to traditional stage theories, this oft heard statement must be interpreted as pathological adjustment to disability. The question of unrealistic hope has been hotly contested and opinion is polarised (Elliott et al., 1991). Early interventions derived from stage theories focused on addressing false hope, based on the premise that acceptance of one’s fate would allow for a positive adjustment (Kerr & Thompson, 1972; Mueller & Thompson, 1950; Wortman & Silver, 1991). The above statement, I will walk again, creates particular alarm for physical therapists and nurses who become concerned that a state of denial will impact on the progression through the rehabilitation process. Hope is often confused with denial. An injured person’s hope to walk again and the preparation for a life with a disability are not, however, mutually exclusive. Drawing from the field of palliative care, where the importance of hope is openly acknowledged, powerful examples, such as acknowledging when one is dying yet hoping to stay alive, can be found (Back, Arnold, & Quill, 2003). Positive illusions, denial, false hope or optimism may act as a buffer that allows people to maintain purpose. Only at the extreme end of reality distortion is false hope found to be counterproductive (Elliott & Richards, 1999; Elliott et al., 1991). It is important that professionals are able to understand the importance of the role of hope in their interactions with clients.
It has been said that confronting patients with reality (as in truth telling) destroys hope but this need not be so. Even people who understand that their spinal lesion is complete and are aware that there is no chance of recovery, are able to maintain a seemingly contradictory hope (Dorsett, 2005). In fact it has been established that hope leads to better adjustment (Elliott & Kurylo, 2000; Elliott & Sherwin, 1997). Generally, people who have greater hope are less distressed and less angry and have fewer handicaps in the first year following SCI (Elliott & Richards, 1999).
When a person with SCI feels emotionally abandoned or believes that their perspective is being dismissed, hope can be destroyed. Supporting and encouraging hope is the role of every rehabilitation professional and begins with interconnected, respectful relationships that are characterised by empathy and understanding (Carpenter, 1994; Snyder, Lehman, Kluck & Monsson, 2006).
Myth 4 Divorce
Divorce is a likely consequence for people who have sustained SCI.
It is a common belief of many rehabilitation professionals that SCI results in marital stress increasing the risk of divorce. Research findings, however, indicate that while divorce rates are elevated in the first three years following SCI, beyond that period, divorce rates are similar to, or even less than, those of the general population (DeVivo & Fine, 1985; DeVivo & Richards, 1996). These findings suggest that there is an initial period of stress and adjustment in many relationships following SCI. Beyond the first three years, however, it would seem that the relationships of people with SCI differ little from those in the general population, and it is speculated that marriages that are intact after first three years may even be strengthened (Crewe, Athelstan, & Krumberger, 1979; Crewe & Krause, 1990, 1992; De Vivo & Fine, 1985; De Vivo, Hawkins, Richards, & Go, 1995; El Ghatit & Hanson, 1976). Marriages, however, entered into post-injury have significantly lower divorce rates than reported in the general population (De Vivo et al., 1995).
Divorce rates must be interpreted with caution, never in isolation, when drawing conclusions about adjustment. Divorce rates say little about the quality of relationships prior to sustaining SCI or the quality of relationships that do not result in termination. Likewise, marital satisfaction cannot necessarily be assumed if partnerships have not been terminated. The literature does suggest that it is the attitude of the person with SCI that influences the ability to enter into or maintain relationships (Berkowitz, Harvey, Greene, & Wilson, 1992).
The research findings tells us that the first three years are the most challenging in marital adjustment following SCI. Attitudes of professionals caring for people with SCI must reflect this knowledge. Services need to be responsive during this period as divorce is not an inevitable consequence of SCI.
Myth 5 Unemployment
A person with an SCI is unlikely to gain meaningful employment.
There is a perception that serious physical disability precludes a person from re-engaging in meaningful employment. For those that do return to work, professional opinion varies as to the length of the recovery period prior to re-entering the workforce.
Employment rates, while less than pre-injury rates, are reported by some researchers to be as high fifty percent in some populations (Dorsett, 2001; Krause, 1992). Though poor employment outcomes are commonly reported, Krause (1992) suggests that reporting employment figures at a static point in time may misrepresent employment rates and perpetuate the recurring theme of low employment rates following SCI. It has, however, been found that approximately thirty percent of people with SCI are working at any given period (Engel, Murphy, Athanasou, & Hickey, 1998). Though opinions vary concerning return to work, some consistent generalizations emerge from the literature such as the influences of degree of disability, age, and education level. Other variables identified as influencing return to work include being able to independently access transport (particularly the ability to drive oneself and access to a modified vehicle), marital status, dependent children, motivation, pre-injury employment status and social support (DeVivo & Richards, 1992; DeVivo, Richards, Stover, & Go, 1991; DeVivo, Rutt, Stover, & Fine, 1987; Hess, Ripley, McKinley, & Tewksbury, 2000; Krause et al., 1999; McShane & Karp, 1993).
The overall picture may be more encouraging than has been suggested. There is evidence that employment opportunities for people with disabilities including SCI have changed over the last two decades in some communities creating a more optimistic outlook for people with SCI. In 1982 it was reported in Queensland, Australia, that less than one fifth of people with SCI were employed in a 1975-80 sample whereas the findings of a later Queensland study report indicate an improving trend (Dorsett, 2001; Richards, 1982). It is probable that these changes are attributable to greater inclusiveness, more opportunity, improved transport and technology, and greater employment incentives.
Qualitative reports indicate that not all people have the same access to vocational opportunities and that the meaning of work can be of significant individual importance (Fronek, 2005). Most research has focused on the characteristics of those who are employed and failed to address the barriers confronted by those who are marginalised, or the perceptions of those individuals who are unemployed and their unique social or vocational situation (Crisp, 1990; Inge, Wehman, & Targett, 1996). Rehabilitation interventions should work towards providing opportunities, eliminating barriers and incorporating flexible work arrangements as opposed to focusing on the effects of the disability itself. Other factors that relate to discriminatory practices require intervention at a policy or societal level. Policy development, education, transport and other environmental barriers, however, can be addressed and will directly impact on the individual. Positive expectations regarding resumption of work after SCI are an important indicator of successful reintegration into the workforce (Schonherr, Groothoff, Mulder, Schoppen, & Eisma, 2004).
Discussion
Myths persist far too often in practice settings despite expanding knowledge. Little is written on how to debunk persistent myths that may exist in the interdisciplinary team. In the authors’ clinical experience, modification of practice attitudes can be influenced at two levels; on a case-by-case basis, and through team capacity building. The challenge is for social workers and psychologists to ensure that new knowledge is reflected at both the micro and macro levels. Entrenched views will influence the way rehabilitation is delivered, ultimately impacting on client outcomes. Therefore, it is important that interdisciplinary practices are based on the best evidence available and by collaborative exchanges.
There are a number of strategies that can be used to facilitate change on a micro level. An important first step is the reflective self-evaluation of personally-held belief systems and how these beliefs stack up against the evidence. A number of issues arise in rehabilitation settings that provide opportunities for sharing contemporary knowledge, offering supportive collaboration and modelling behaviours. As an example, Myth 3, Unrealistic Hope, can create a great deal of anxiety for team members, and it is important to manage these situations by providing information appropriate to clients’ perspectives while acknowledging and responding to the anxiety of the team member. Environments that support and encourage collaborative discussions are important for the dissemination of new learning and are most valued by professionals (Bokhour, 2006; Howarth, Holland, & Grant, 2006).
On macro level, education strategies and team building are important factors in addressing outdated professional knowledge. Systems generally exist to address educational need in forums such as professional development, supervision, seminars, and conferences. There is an obligation to provide contemporary, evidence-based, needs-related, and client-focused education. Critical thinking and questioning are core components of professional development.
Traditional approaches have focused on discipline-specific practices while increasingly quality rehabilitation services are moving towards collaborative interdisciplinary exchanges. The myths discussed above perpetuate the old ways of doing things. They provide potent examples of spoken and unspoken influences that profoundly impact on rehabilitation practices and client outcomes. At a leadership level, it is increasingly important to nurture cultures of collaborative practice that promote professional growth.
Conclusion
Adjustment to SCI is a complex and individual process incorporating the interplay of a multitude of factors. The research tells us that the views of professionals working with people with SCI can vastly differ from the views of people living with SCI. As professionals, our obligation is to respect the unique body of knowledge that the client brings to the rehabilitation process. People with SCI deal with the immediate impact of trauma in the short term and the effects of living with disability in the long term. Effective clinical interventions need to be focused where there is most benefit. Therefore, it is important that as rehabilitation professionals, we respond in ways that positively influence the individual’s coping abilities and assist the person to overcome the life crisis being confronted. By debunking myths based on tradition and adopting a leadership role within the interdisciplinary team, social workers and psychologists are in a unique position to influence the way rehabilitation professionals deliver services. Translating new understandings based on contemporary research into practice is the first step towards truly holistic rehabilitation. Perhaps we need to re-evaluate our positions within the interdisciplinary team and facilitate, in new ways, the negotiation of the shifting sands between knowledge and practice.
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Pat Dorsett, PhD, is a professor at the School of Human Services, Griffith University, Queensland, Australia.
Patricia Fronek, BSW, is with the Queensland Spinal Cord Injuries Services, Queensland, Australia.