Exploring perspectives of individuals with disabilities on stress-coping.
From a research perspective, much of our existing knowledge about stress management, or stress-coping as it is commonly referred to in the literature, is based on studies of white, middle class members of society (Groomes & Leahy, 2002; Waiters & Simoni, 2002). People from different backgrounds and life circumstances have not received a great deal of attention, which leaves significant gaps in understanding. This is problematic as stress-coping is not a singular concept but one that involves highly complex processes that are influenced by multiple factors-individual, social, economic, societal/structural, cultural and political-which often converge and in doing so become increasingly difficult to manage (Janssen, Schuengel, & Stolk, 2002; Turk & Monarch, 2002).
As a contribution towards closing this gap, the present paper documents results from an exploratory, qualitative study in which we examined the ways in which men and women with physical disabilities cope with stress. In adopting this focus, our intention was not to suggest that people with disabilities are inherently different, but to acknowledge that disability, as one aspect of identity, introduces another factor that influences, alone or in interaction with other stressors (e.g., social, economic, societal/structural, cultural and political), stress-coping. This work is particularly relevant given the importance of stress management in rehabilitation counselling (Putnam, et al., 2003), and calls for better grounding of programs and interventions in the real life experiences of individuals with disabilities (Elliot, Kurylo, & Rivera, 2002).
Review of Related Literature
Stress management is a key component in many rehabilitation services and programs (Putnam et al., 2003). One reason for this emphasis is that while likely to encounter sources of stress similar to their counterparts without disabilities, evidence suggests that individuals with disabilities experience: (a) a broader range of stressors (Bramston & Fogerty, 2000), and; (b) unique stressors that tend to be chronic in nature and intensified by factors specific to one's disability (Groomes & Leahy, 2002).
In the disability literature, stress-coping is often addressed as a sub-concern in broader analyses of health and adjustment to disability. For example, in exploring the ways in which people with disabilities defined health and wellness and the factors that positively or negatively contribute, Putnam and colleagues (2003) identified a number of themes that may apply equally well to stress-coping. These themes included: social support, socializing with friends and family, staying active, learning how to adjust to disability, maintaining a positive attitude, and attending to spiritual life. Additionally, health-promoting behaviours (particularly, physical activity/exercise), volunteer activities, and opportunities for personal development (e.g., classes, travel) and relaxation (e.g., listening to music) were identified as facilitators of health, and all are recognized in the stress literature as effective coping mechanisms (Moos, Holahan, & Beutler, 2003).
Stress-coping related research nested within an adjustment framework has considered a host of factors and outcomes. For example, proactively addressing barriers associated with one's disability (e.g., accessibility) and other positive strategies (e.g., positive thinking) have been linked with adjustment and effective adjustment (Elliot, et al., 2002; Noonan, et al., 2004). Finding meaning in life and disability, fostering appreciation for personal self-worth and preciousness of life, and seeking enhanced personal and spiritual awareness are other examples of effective adjustment mechanisms that also may apply to stress-coping (Dunn, 1994; 2000; Tedeschi, Park & Calhoun, 1998; Wright, 1983). Jarama and Belgrave's (2002) research involving African Americans with disabilities identified "resistance factors" (referred to as "resources that may help one cope with a disability," p. 325), including self-esteem, social support and active coping, as predictors of mental health adjustment to disability. In another recent study, Livneh and Wilson (2003) found that coping strategies substantially contribute to psychosocial adaptation to disability among university students with disabilities. While problem-focused coping was identified as the most powerful predictor of disability-specific psychosocial adjustment and life satisfaction, emotional/social-focused coping also produced statistically significant, positive effects on adapting to disability.
Linking health and adjustment research that broadly relates to stress-coping is an underdeveloped yet growing body of work that considers possible gender related differences in these areas (Nosek & Hughes, 2003). Women with disabilities are often of particular interest in this work because of the "double jeopardy" of being a female with a disability in a male and "able-bodied" dominated society (Fine & Asch, 1988). Substantiating this view, McGrath, Keita, Strickland, and Russo (1990) argued that women with physical disabilities might encounter higher levels of stress than their male counterparts because they experience higher rates of poverty, social isolation, violence and other forms of victimization, and chronic health problems. Other research has shown that women with disabilities "face more serious barriers to achieving their life goals than do men with disabilities or women in general" (Nosek & Hughes, p. 230) and that "five major psychosocial problems are disproportionately severe for women with disabilities" (p. 226): depression, stress, low self-esteem, social isolation, and abuse. Offering a perspective relevant to stress management, Bedard et al. (2003) noted that, "men and women have different needs and current interventions target men's needs more successfully" (p. 728).
Other studies within the disability literature have taken a more direct approach to examining stress-coping strategies. In one such study, Yorkston, Johnson, Klasner, Amtmann, Kuehn, and Dudgeon's (2003) conducted interviews with individuals with multiple sclerosis to learn about the coping strategies and resources people used in daily life. The key themes from their research included: (a) defining the work that needs to be done (e.g., setting priorities, learning about resources and requirements, fixing it yourself), and (b) changing how things get done (e.g., self-monitoring and vigilance for potential problems, constructing strategies, weighing the costs and benefits of strategies). Yorkston et al. (2003) also emphasized that, "many participants took the point of view that they needed to be in charge of developing their own plans, This sense of authority was a source of strength" (p. 374).
Demonstrating the buffering effect of positive events in offsetting negative impacts of stress among individuals with disabilities, Zautra, Reich, and Guarnaccia (1990) found that positive life events were associated with higher positive affect and lower distress. Since positive events frequently take place in leisure settings, leisure may play an important role in generating meaning and, consequently, in counteracting or buffering the negative impact of stress on health and wellness among people with disabilities. Consistent with this idea, although not directing examining stress-coping, Ward (2003), in a mixed-method study of clients with physical disabilities at day activity centres in Ireland, demonstrated that despite marginal living standards (e.g., high poverty), highly valued social and recreational activities were effective means for enhancing well-being.
In summary, much of the existing literature concentrates on disability as both a negative and positive stressor, which varies in its affects depending on the person's life circumstances, broader social influences, and the nature of one's approaches to coping. For example, proactively taking action and using positive coping strategies (e.g., positive thinking) both have been identified as effective methods for promoting health and reducing the stress some individuals associate with their disability (Elliot, et al., 2002; Noonan, et al., 2004). The literature also includes work that presents disability as a highly positive, life defining opportunity for personal growth, spiritual awareness, and self-discovery of inner strength and resilience (Dunn, 1994; 2000; Tedeschi, Park, & Calhoun, 1998; Wright, 1983). This highly positive perspective may be a reaction to traditional, pathology-based views about disability and a pointed reminder of Trieschmann's (1988) contention that "most persons with disabilities have significant strengths and coping ability, and this fact appears to have been seriously underestimated by many professionals" (p. 85). The ongoing relevance of this contention is implicit in Elliot et al.'s observation that "participants perspectives have not been consistently taken into account in research and practice" (p. 695) that involves individuals with disabilities. As such, researchers and educators in rehabilitation counseling have called for greater emphasis on: (a) the perspectives and experiences of individuals with disabilities in research, (b) stress-coping in life generally (i.e., not only as an adjustment to disability issue), and (c) stress management interventions that reflect the lived experiences of these individuals, and promote the use of personal strengths, resources and self-developed coping mechanisms (Groomes & Leahy, 2002).
Complementing these suggestions, our purpose in the present study was to explore the strategies people with physical disabilities use in coping with stress in their lives. A series of focus groups were conducted for this purpose as our interest was in learning about stress-coping from the lived experiences of the participants directly. Beyond addressing identified gaps in previous research, the present study offers implications of practical significance as well. In particular, a better understanding of the strategies people use and find effective may provide insights for enhancing education, training and practices dedicated to stress reduction and promotion of overall health and life quality.
Empowerment as a Conceptual Framework
Empowerment was adopted as a framework for analytically synthesizing and conceptually grounding our findings. At its most basic level, empowerment involves a sense of individual mastery and control over one's life and enhanced community connectedness (Rappaport, 1987). In what Condeluci (1995) referred to as a paradigm shifting paper, Banja (1990) focused on empowerment as defining the essence of rehabilitation: "Rehabilitation is a holistic and integrated program of medical, physical, psychosocial, and vocational interventions that empowers a disabled person (sic) to achieve a personally fulfilling, socially meaningful, and functionally effective interaction with the world" (p. 614). Empowerment also has received considerable attention in the health promotion and quality of life literature. In this context, empowerment is viewed as either an outcome of services/practices (Rappaport, 1987; Friedmann, 1992) or an important personal and social process for promoting health and life quality (Labonte, 1996).
Reflecting the latter perspective, researchers have proposed a number of models for characterizing the relationship between empowerment, health, and/or quality of life (Evans & Stoddart, 1990; Israel, Checkoway, Schulz, & Zimmerman, 1994; Schalock, 1996; 1997). One such model, proposed by Wallerstein (1992), links empowerment to health. Drawing on research that incorporated a variety of psychological and sociological constructs, she argued that objective social experiences (e.g., living in poverty, having limited decision making authority/control, lacking social support) concurrently exist and interact with psychological or subjective experiences (e.g., learned helplessness, external locus of control, chronic stress). The interaction of these experiences may result in a generalized state of disempowerment, lack of personal control, and decreases in mental and physical health status. Empowerment, it was contended, reverses these potential implications by producing changes at the intrapersonal and interpersonal levels, as well as changes in sociopolitical practices (i.e., community empowerment).
To date, intra- and inter-personal levels of empowerment have been emphasized over sociopolitical and other influences (e.g., the role of systems and professionals) that affect empowerment in a broader context (i.e., community empowerment). While this has been a point of criticism and an area that continues to need greater attention in the future (Emener, 1993; Labonte, 1993; 1996), we also concentrated on the application of empowerment at the individual level (i.e., intra- and interpersonal) in the present study. This approach was dictated by the nature of our research and findings, which focused on individual perspectives on stress-coping, not a dismissal of other factors likely to influence empowerment in its fullest sense. Despite this limitation, we used empowerment as an analytical framework for synthesizing the results of the present study in an effort to provide a stronger and conceptually grounded understanding of the dynamics of stress-coping.
In the present study we used focus groups as the principal means of data collection. Focus groups are an effective method for obtaining in-depth information about a concept or issue, and learning about people's experiences (Madriz, 2000). Rather than being directed by predetermined hypotheses or controlled by existing measures, focus groups enable participants to express themselves, in their own words, in an open and flexible process (Krueger & Casey, 2000). As an analytical tool, phenomenology was adopted. From a phenomenological perspective the main focus is on "what people experience and how they interpret the world" (Patton, 1990, p. 70). Phenomenology also enables consideration of the broader social context in which people live (Schutz, 1970) and "how the social world is made meaningful" (Gubrium & Holstein, 2000, p. 489).
Clients of two agencies that serve people with disabilities in a western Canadian city were recruited for participation in the present study. In cooperation with the agency directors, a letter was sent to their clients to explain the purpose of the study and what participation would entail. Those who were interested in volunteering were asked to return an enclosed informed consent form with contact information. A criterion-based purposive sampling technique was used to identify prospective participants from this pool. The selection criteria required that (a) the individual have a diagnosed form of disability, preferably one that resulted in permanent mobility impairment, and (b) relatively equal representation of people by sex and age. Once screened according to this criteria, a research assistant called the identified individuals to set up a focus group session. Twenty-two individuals who met the criteria engaged in one of three focus groups: (a) women only group (n = 9), (b) men only group (n = 4), and (c) mixed gender group (n = 4 women and n = 5 men). (1)
Each participant's self-report on the nature of his/her disability yielded the following descriptors: spinal cord injury (n = 5), quadriplegia (n = 4), paraplegia (n = 3), arthritis (n = 2), polio (n = 1), other physical/mobility impairments (n = 6), and visual impairment (n = 1). Participants ranged in age from 21 to 72 years with the mean of 43.0 years (SD = 14.6), while females (25 to 72 years, mean = 47.4) were relatively older than males (21 to 60 years, mean = 36.6). Of the twenty-two participants, eight (36%) had completed a university degree (four females and four males). A greater number/percentage of females (six of thirteen, 46%) were single than males (three of nine, 33%). Ranges of yearly household income (cited in CND $) were: less than $10,000 (3 females and 3 males), $10,001-$20,000 (3 females and 1 male), $20,001-$30,000 (2 females), $30,001-$40,000 (4 females and 3 males), $40,001-$60,000 (2 males), $100,001 or above (1 male). Regarding race, participants identified themselves as Caucasian (14), Aboriginal (6), Central American (1), or African (1). Of the twenty-two participants, nine (41%; four females and five males) were unemployed, four (18%; three females and one male) were retired, and only two (9%; one female and one male) were employed full-time.
Focus Group Procedures
Each session was facilitated by an experienced professional moderator at a focus group facility of a local research firm, using a question route (Krueger & Casey, 2000) developed by the research team. The question route included opening comments about the topic of stress, introductory questions to engage the participants in the topic, transition questions related to evaluations of stress, key questions on the causes of stress and coping strategies, and ending questions to summarize the discussions and confirm main points (see Table 1). The key question specific to the purpose in this paper was: "What are the ways or things that you do or use to help you deal with stress in your life?" A series of probes also were used to enable the participants to elaborate on their views about coping, and if relevant and appropriate from their perspective, the role of leisure in this process. At the conclusion of each session, the participants completed an exit questionnaire to provide socio-demographic background information. They were thanked for their time and contribution and given a $50 honorarium. Each focus group lasted approximately 90 minutes. The research assistant transcribed verbatim the conversations.
Data Analysis Procedure
A phenomenological analytic approach was used for interpreting the data. Two researchers individually identified statements about coping with stress and listed every significant statement relevant to the phenomenon (i.e., "horizonalization" of the data). Each statement was treated as having equal value (Moustakas, 1994). Next, by removing repetitive and overlapping statements, these statements were grouped into themes or meaning units (Creswell, 1998). Reflectively reading and re-reading the full transcripts to ensure that interpretations of the essential statements were consistent with the original context formulated these themes. The researchers individually engaged in this process to assess whether the themes accounted for all the essential statements, and to ensure that the themes were consistent with the data from which they were drawn (Riemen, 1986).
Based on analysis reports by the two researchers, the principal researcher developed summary statements that described the various stress-coping themes (i.e., the "essentials" of the phenomenon, Patton, 1990), along with selected original quotations from the transcripts to illustrate the relevance of these statements. Subsequently, the two researchers jointly reviewed the summary statements to ensure that the final version accurately reflected the focus group data. The participants also received a summary of the analyses for their assessments. Of the 64% who returned their evaluations, all were in unanimous agreement that the summary descriptions were consistent with the views expressed during the focus groups and captured their perspectives on stress-coping.
Our interpretation of the focus group data yielded five common themes: (a) socializing/social support, (b) cultivating and using positive affirmations, (c) reconnecting spiritually, (d) diverting one's focus, and (e) rejuvenating through leisure/exercise. Additionally, one gender specific pattern of difference-seeking emotionally satisfying outcomes versus conscious avoidance-also was identified.
Socializing/social support. The men and women in this study identified socializing and the social support gained from these interactions as a key means of stress-coping. Discussing their disabilities as one source of stress, two women noted that socializing with friends, especially those who looked beyond their disabilities, was refreshing and promoted a sense of acceptance:
I like going out and being around people that won't look at me and say, 'She has a disability.' Just being out and sort of maybe playing. It's kind of a nice relief when you can go out and nobody is making it an issue or it doesn't have to be an issue. Going out with my friends, I mean, what better way to feel better. If you have a good circle of friends, you don't even care 'K has a disability.' If there's something I can't do, they'll help me do it, but it's never pointed at or talked about. If you have a good group of friends, it's great because you can just feel normal. So it does relieve your stress.
A male participant offered a counter perspective, suggesting the coping benefits of interactions with "other people with the same type of disabilities":
I'm on the Manitoba Rugby Team. Listen to their woes and the positive things in their life--I can reflect on that and try to weave some of their thoughts into my own life and just being with other people with the same type of disabilities I have. And being able to say whatever I want and not being shy of saying what I want, and I might get a positive response from a lot of guys on the team.
Extending this suggestion, some participants introduced culture as a transcendent aspect of identity, acceptance, and coping. In explaining the value of culturally relevant interactions with people who held similar values and beliefs, an Aboriginal woman said:
Belonging to groups, just for get-togethers. They're all my culture, they're all Native. Even just going sitting there, listening to them tail. I always come home with such a light feeling because they share so many wonderful stories with me, and it makes me feel good. And it's nice to be with them, and it makes me feel happy.
Focusing on life stressors more generally (i.e., not specific to disability), socializing was helpful as a means of extending one's coping strategies by learning from the experiences of others. Addressing this point and the instrumental value of social support, one man stated:
I go to people who are satisfied and they can help you. They are going to help with ideas because like my situation, you tail to them; they give you a solution how you can manoeuvre through the stress.
For other participants, enjoying time with friends was an escape from personal pressures and dwelling on the worries they incurred. These "breaks" were attributed with outcomes such as elevated positive affect and a general sense of enhanced well-being. One woman's reflections capture this perspective:
I have quite a few friends. Have a dinner party or maybe just talk and go out to a bar. For one thing, they're all very encouraging; it's just a good time to sit around and laugh. Find all the good things in life and go with it. I mean, what girls don't like sitting around eating? Just getting away from, not concentrating on your own thoughts. You always feel better when you're in a social gathering. It doesn't have to be of a serious nature, just fun, or it could be serious, but I think it's the fact that you're interacting, that's so good for you! I feel much better.
Cultivating and using positive affirmations. The participants, both men and women, dealt with stress by using a wide range of positive mind strategies or affirmations, including: self-talk, self-reflection, self-acceptance, and self-learning. For example, one female recited a personal mantra, "I'm not weak, I'm strong, I can do it" to manage her stress; while another said: "I mutter a lot. When I get so frustrated, I just talk my way through it." Some participants also used introspective self-reflection to elevate their sense of mastery and to avert reliance on less productive stress-coping approaches (e.g., anger-based):
I found if I keep the attitude that everything in life that happens, there's a purpose for what's happened, and try and find out what that purpose is, why it's happened, it sometimes helps me feel more in control. It keeps me from getting angry or upset.
The following collection of quotes, from three different men, illustrate the affirming importance attributed to self-acceptance as a coping mechanism
I normally take time for myself, love myself, because I think one thing about stress, it always conquers people who are stressed out because they don't like themselves. Sometime I take myself as special. I don't want to compare myself with somebody else because that's the beginning of stress. Well, you can't walk too well and you've got high blood pressure and you've got Parkinson's, I wouldn't call that entirely healthy. But I'm satisfied with where I am.
Another man indicated that believing "nobody is perfect," and knowing "everybody has problems" and "you're not the only one suffering" were keys to "living strong." Similarly, in talking about stress and the importance of personal acceptance in coping, one woman observed: "we're all human beings, we're not human doings. It's not what we do or how long it takes us to do it, it's who we are. Knowing that's a good thing."
Viewing one's stress-coping experiences as opportunities for self-learning and enhanced confidence, also were popular among the participants. Describing this view, two women noted:
You do need to learn how to deal with it. It's worth finding and doing what you have to do and getting the help, just to be successful at living. Going through a lot of crap builds character. It's true, it does. As I've gotten older, you realize we've had such a struggle to get to this point in our lives and worked through so many things. It doesn't bother me so much any more, because you've been there, done that and this is another day and you'll get through it.
Reconnecting spiritually. Whether through formal church-based religious affiliations, individual approaches to meditation, or cultural practices, spirituality played a key role in stress-coping for many of the participants. Traditional church-based activities typically included attending church on a regular basis, prayer, and bible study. In describing the value of these activities in stress-coping the women participants frequently used phrases such as, "prayer gives me strength" and "encourages me", "God takes my burdens away when I'm really stressed out", and simply "faith pulls me through." Men also referred to the value of prayer, with one man specifically linking it to pain management. Among men, physical activities such as, "cycling" or "lifting weights," were cited as "a source of meditation," while women spoke of personal "pampering" activities (e.g., "taking a long bath"). Speaking about the importance of spirituality within her culture and as the her ultimate defence against stress, one Aboriginal indicated, "I smudge on my own with my own culture ... I usually do that at a point when I know I'm just at wits end." Despite differences in their chosen activities, these personal meditation approaches were opportunities for "clearing" one's mind and spiritual revival.
Diverting one's focus. "Keeping busy" and engaging in activities for the express purpose of diverting or temporarily escaping stress evoking thoughts, defines the essence of this theme and distinguishes it from related themes (e.g., cultivating and using positive affirmations, and rejuvenating through leisure/exercise). Quotes from several different participants provide examples of the various diversion tactics used:
I have burning sensations in certain areas of my skin, from the nerve damage up here, but I've learned to focus it out. I keep busy--reading the paper or working on the computer. I keep the membership list of several model train clubs. It keeps me going!" Listening to music transpose me in the world ... I'm not thinking about my problem, I'm thinking about the music, that's the way I can handle the stress. One way I cope is to concentrate on everybody else's problems, just throw myself into solving their problems and forget about my own. In the summertime I do power walks. I just fly out the out the door. I've got to go for a walk ... there are times I just have to get away, get away from the situation.
For some participants, generally women, doing domestic tasks diverted stressful preoccupations as well:
I'll find something to keep my mind occupied. Just anything. Even if it means cleaning my own house. I'll take the time and haul all the little stuff off of my stereo, and just dust. Just do something to keep your mind off of whatever is bothering you. I cook and eat. Something I do to lift stress, I like to cook. I just do something that just sort of takes my mind completely away.
Rejuvenating through Leisure/Exercise. Although involving activities similar to those used to avoid thoughts about stress, the uniqueness of this theme lies in the role of leisure and exercise as forums for directly managing stress and countering its life-balance altering effects. Two participants summarized this distinction:
Doing things to escape, to get stress out of my head, doesn't directly relieve the stress, it doesn't remove the problem ... Things I do that remind me of the good times in my life and stuff I do just because I love to, does. It puts the balance back." I listen to music or take a bath, for me it helps, because it allows me to spend time to realize that a lot of the things that may be creating the stress are just silly things or things that I can take care of. It allows me to get things back into perspective. And it allows me to know that I'm not really that bad off.
Another woman indicated that her preferred leisure past time, volunteering, is "a stress reliever" and a means of "sort of getting out of myself" by "doing something for somebody else."
Other participants identified a broad range of leisure engagements (e.g., walking, table tennis, bicycling, reading, gardening, crafts, hobbies, playing with pets), which independent of their specific forms were described as "good stress relievers" and enhancers of personal pleasure and life balance. Exercise or physical activity, as one type of leisure, warrants particular mention as many of the participants focused on the stress "busting" benefits of these activities and the improved sense of well-being they produced. On this point, one woman enthused:
I started exercising just two years ago, but I did it as a response to save my sanity from a whole pile of stress that was on me at the time. I go to the Wellness Centre three times a week. I do a hand cycle, cycling, and some laps. And then I go do some weights. And that was a chain reaction. I realized that I was losing weight, although that wasn't intentional. It worked out very nicely, and I started to feel a lot better physically. But, perseverance, it changed how I thought about things, it changed my response to really horrible situations and it let me move on. I did get much stronger--the incredible benefits.
Reflecting opposite ends of the spectrum in terms of intensity of physical activity/sport participation, two men noted its value in coping and wellness promotion:
When I'm stressed, I normally go and do a lot of running, which I like most ... I go out for long runs a lot, because right now I'm around some of the best runners in Manitoba, it's interesting for me, that's what helps me overcome my stress most of the time. I went to physiotherapy for about two and half years, they taught me how to walk again a little bit; I use a walker around the house. Two wheels in front and two skids in back. This way I walk 20 times a day, 50 yards each time. I purposely walk, instead of lying in the house.
Leisure travel also earned particular mention as a stress-coping method. For some participants, the potential effectiveness of this approach was off set by concerns (financial, extra planning demands) that made the prospect of travel stress inducing rather than stress reducing:
It's just all the arrangements. The equipment you have to take, all that stuff. I like to travel, but it takes time and money. I think it probably would be a stress reducer as long as I had the money.
For other participants, these concerns were outweighed by the perceived benefits of leisure travel, which included: the "adventure of being in a strange place," enjoying new and positive experiences, "relaxing," escaping routine, and reconnecting with friends. Two participants elaborating on the value attached to leisure travel, stated:
I'm lucky enough to have a cottage to retreat to in the summer months, so I find that's a real relaxing place to go to. Also, I like travelling, I like adventure of travelling. I think it [leisure travel] reduces stress. Just to get out of the house for a while and see something new ... It changes the nature of your irritants. I've got a good set of girlfriends and it's absolutely essential that we plan, even if it's just a day trip or two day trip; every couple of months we're doing something. I don't think I would cope without it. I think it's fabulous.
Seeking emotionally satisfying outcomes verses conscious avoidance: A gender specific pattern? Originally, one of our intentions in this study was to consider possible gender related differences and similarities in stress-coping among men and women with physical disabilities. As explained previously, we shifted away from this approach, as our data were of insufficient depth for a detailed analysis of this nature. Our interpretation of the data, however, suggested a pattern of difference between the outcomes women and men sought via their preferred coping mechanisms. In other words, while both used strategies within each of the theme areas, women tended to rely more heavily on approaches that produced emotionally satisfying outcomes. This was captured in their emphasis on strategies that not only relieved stress, but also left them "feeling better", "feeling good", "feeling happy", and "feeling a lightness". Conversely, men seemed to prefer strategies consciously selected for the purpose of avoiding or delaying the need to deal stress (e.g., "not thinking about my problem"). Being sensitive to the possibility of perpetuating gender stereotypes and recognizing that our data were not sufficient for this pattern to be considered a theme (characteristics and indicators of insufficient depth; Boyatzis, 1998), it is a notion that arose and in the interest of balanced accounting must be noted.
The results of the present study demonstrate the various resources or strategies used by a group of individuals with disabilities for dealing with stress in their lives. Five key themes were identified that capture these approaches. First, socializing or gaining social support through a network of family and friends was an important stress-coping method that provided opportunities for "sharing stories," openly expressing oneself, "feeling normal," and receiving instrumental benefits. This finding is consistent with reports from previous research that identified socializing and/or social support as facilitators of health and wellness (Putnam et al., 2003), mental health adjustment to disability (Jarama & Belgrave, 2002), and stress-coping (Brodwin, Tellez, & Brodwin, 1993) among persons with disabilities. For example, Livneh and Wilson (2003) found that gaining social support for personal, interpersonal, or instrumental purposes significantly contributed to psychosocial adaptation to disability. Jarama and Belgrave (2002) also reported that an absence of social support was associated with anxiety among African Americans with disabilities"--the assistance nature of social ties may help persons with disabilities cope with emotional and instrumental difficulties, relieving anxiety" (p. 337).
Cultivating and using positive affirmations, the second theme in the present study, incorporated multiple techniques for creating a positive mind set. These included: the use of positive self-talk, self-reflection, self-acceptance, and self-learning. Maintaining a positive attitude or set of beliefs is recognized as an important factor in adjustment to disability, and health promotion generally (Putnam et al., 2003; Tedeschi et al., 1998; Wright, 1983). King and Kennedy also reported the beneficial effects of positive reappraisal in psychological adjustment to stress among people with a disability; while Noonan et al. (2004) found that many professionally successful women with disabilities reframed negative stressors into opportunities for personal and professional growth and empowerment. Bedard and colleagues (2003) advocated mindfulness-based interventions as a way of promoting "a new way of thinking about disability" (p. 722) and life quality.
Reconnecting spiritually, the third of the identified themes in the present study, involved traditional faith-based activities (e.g., prayer, attending church), personal approaches to meditation, or cultural practices that revived and renewed coping strength and resilience. Previous researchers have documented similar findings. For example, in Putnam et al. (2003), "attending to spiritual life" (p. 40) was denoted as a central factor in health and wellness of people with disabilities and particularly noteworthy among "the Native American focus group where participants described a strong relationship between spirituality and culture" (p. 40). Noonan et al.'s (2004) study of women with disabilities from diverse racial backgrounds (i.e., African, Asian, Hispanic, and Native Americans) also isolated spirituality as an important and effective element in coping. In the adjustment to disability literature, Elliott et al. (2002) pointed out that spiritual enrichment might enhance personal strength and resilience, and renew one's sense of life meaning.
The fourth and fifth themes (diverting one's focus and rejuvenating through leisure/exercise, i.e.) while consistent with the results from previous research, also suggest an important distinction. Considering points of convergence first, Putnam and colleagues (2003) also identified "the importance of staying busy" (p. 40) and the value of relaxation (e.g., listening to music), leisure and, physical activity in managing stress. Ward's (2003) mixed-method study of the role of recreation in enhancing satisfaction among people with a physical disability in day activity centres in Ireland yielded similar results. In another study, positive life events that diverted people's attention from their worries were related to higher positive affect and lower distress among older adults with disabilities who reported chronic adjustment stress (Zautra, et al., 1990). Unique to the present study is the subtle yet key distinction made by the participants' between activities undertaken for the purpose of diverting attention from stress and those used in a direct effort to resolve or reduce stress and enhance life balance (i.e., "everything in life isn't about stress, you've got to enjoy the good stuff too."). These underlying differences in incentive or purpose, not the actual activities themselves (which, in some cases, were similar), substantiate the merits of this interpretation.
Considering the five key themes from the present study from an immediate versus long-term benefits also provides some interesting implications. For example, socializing/social support contains both immediate and long-term aspects. Socializing or going out with family or friends can provide immediate stress-coping benefits through the form of companionship (Ward, 2003). Spending enjoyable time in social settings also is likely to facilitate positive affect and mood, while sharing stories or expressing openly with family/friends may help better manage one's emotion and/or situation. Social support from a network of family/friends can have more enduring affects as a source of encouragement and advice or ideas for problem solving and coping. Cultivating and using positive affirmations and reconnecting spiritually, are likely to generate mostly long-term benefits. Diverting one's thoughts is a coping strategy with immediate benefits-short term relief from dealing with pressures; while leisure/exercise offers both immediate ("putting things into perspective") and long-term (rejuvenation, restoring life balance) consequences. Whether offering immediate or long-term benefits, each of these themes, alone or in combination, reflected the central approaches to coping used by participants in this study.
Finally, one gender related pattern of distinction was noted in the results of the present study. Originally, our intention was to conduct an in-depth gender-based thematic analysis of our data. This intention was based on previous research results that suggest the importance of considering gender issues and calls in the literature for greater recognition and emphasis on gender in rehabilitation and disability related research (Bedard et al., 2003; Iwasaki & Mactavish, in press; Nosek & Hughes, 2003). Although the data were not sufficient for a detailed analysis of this nature, an apparent gender related pattern did seem evident in the outcomes women and men sought in dealing with stress. Specifically, while women and men used similar coping strategies, the women tended to adopt approaches that reduced stress and enhanced emotional well-being, and men seemed to prefer avoidance or delay techniques (which enabled them to deal with stress on their terms and according to their time frame). Several studies involving women with disabilities offer support for the emotional-coping aspect of this pattern. Nosek and Hughes (2003) suggested that emotional or affective benefits of feeling connected to others facilitate self-esteem and other positive outcomes among women with physical disabilities. Also, Bedard et al. (2003) found that openly discussing and dealing with emotional issues was effective in improving life quality among individuals with a physical disability--seven of the ten participants in their study were women. Hence, coping strategies that emphasize positive emotional outcomes may be more relevant to and effective for women with physical disabilities than for their male counterparts. These findings and suggestions indicate the importance of considering gender in health and stress management programs/ interventions and research for all individuals, including those with disabilities. Bedard et al. (2003) shared this view noting that, despite having "different needs," existing interventions tend to "target men's needs more successfully" (p. 728). Other researchers, however, have offered counter perspectives on the importance of considering gender in research and practice. Focusing on adjustment to disability, Livneh and Wilson (2003), for example, note that the current literature offers "no data to suggest differential levels of psychosocial adaptation to disability between the genders" (p. 200). If nothing else, the gender related pattern identified in the present study, coupled with the lack of consensus in the literature suggests the need for better understanding the role gender might play in stress-coping, adjustment to disability, and life quality.
Empowerment as a Conceptual Framework
Empowerment was adopted to conceptually ground the present study and to analytically synthesize our interpretations of the stress-coping strategies used by the study participants. Examining our findings from this perspective, the five key common themes, while distinct and unique in focus, best reflect the intra- and interpersonal view of empowerment as a process for promoting individual mastery and control over one's life generally, and specifically in this context, managing stress. The dynamic interplay of each of the identified themes in relation to this notion is illustrated in Figure 1, which is proposed as an emergent or working model. The perforated encircling of empowerment at the centre of this model depicts aspects of the participants' lived experiences (e.g., resiliency, mobilization of personal resources and strengths) and how these might interact to influence individual perceptions about stress-coping (e.g., perceived control, efficacy in stress-coping). This positioning is consistent with the model Wallerstein (1992) advanced for linking empowerment and health. The five themes identified in the present study, frame this notion of empowerment, with each serving as strategies for effectively managing stress and contexts for experiencing and facilitating empowerment. Specifically, the present findings demonstrate that a strong support network of family and friends provides encouragement and reinforces confidence in one's ability to deal with stress, while cultivating and using positive affirmations leads to increased perceptions of competence and control in managing life's obstacles. Similarly, opportunities for spiritual renewal and diversional activities also were effective mechanisms for combating stress and promoting empowerment. Leisure pursuits, such as physical activity, also contributed to this interplay between stress-coping and empowerment by fostering "a sense of perspective and balance" and rejuvenating the physical and mental resources, and resilience required in effectively dealing with life's demands.
[FIGURE 1 OMITTED]
In short, empowerment and stress-coping are continuous and complex processes that involve many influences (e.g., personal, social, economic, political). The proposed model emphasizes individual factors in these processes, as this was the focus of the research from which it was drawn. Subsequent research is needed to examine broader influences and applications.
Implications and Limitations
The perspectives of people with disabilities on stress-coping-what this means and the ways in which they manage stress in daily life--is not a well-developed area of study. As such, in addition to contributing to knowledge, the results presented in this paper offer insights of potential value for extending practice in this area. Although in need of further development, the proposed empowerment based model, for example, suggests the importance of stress management interventions that: (a) are based on the experiences of people with disabilities, (b) build on existing strengths and supports, and (c) emphasize personal mastery and control. These recommendations are consistent with recent literature in positive psychology and disability as well (Elliott et al., 2002). From this perspective, capitalizing on people's strengths and resilience in coping is emphasized (Elliot, et al.), as is the need to "amplify clients' strengths rather than repair their weaknesses" (Seligman, 2002, p. 5). The "building of buffering strengths" also is advocated as essential "to first identify and then help patients build a large variety of strengths, rather than just to deliver specific damage-healing techniques" (Seligman, p. 6-7). This positive and strength-focused orientation appears relevant to all psychosocial and behavioural intervention programs for individuals with disabilities, including stress management, which is often an embedded component in these programs. In adopting this orientation, it is necessary to take perspectives of both women and men with disabilities into account, and to focus on identifying and utilizing existing and potential strengths.
As shown in the present study, incorporating social, psychological, spiritual, cultural, and behavioural resources in stress-coping can be effective for capitalizing on, and extending people's existing strength and resilience. While the value of social connections, social support, positive affirmations, and spirituality are often recognized by researchers and practitioners as useful strategies for managing stress, diversional strategies and meaningful leisure pursuits are often over looked or afforded lesser value. The results of the present study clearly indicate that these coping mechanisms, although serving different functions (e.g., escape vs. balance restoration), are not trivial or non-productive undertakings, but make important and meaningful contributions. This reinforces the need for better understanding people's views on effective coping mechanisms (including leisure), the importance of incorporating these perspectives in research, and developing interventions that address the person as a whole"--the total person, not just the disability-related condition" (Putnam, et al. 2003, p. 42).
In this paper we have presented personal narratives that reflect the lived experiences and the meanings attributed to stress-coping among a small group of individuals with physical disabilities in one urban setting in Canada. The culturally diverse composition of this group, with 36% coming from non-dominant backgrounds (e.g., aboriginal, black), also was a strength of this work. Having said that, our purpose in conducting this study was not to offer results that could be generalized to individuals beyond those who participated. This is consistent with tenets of qualitative research in which the transferability of findings is contingent on end-users to evaluate the appropriateness and applicability of extrapolations to different contexts (Patton, 1990). The use of empowerment as a conceptual framework and the proposed working model were offered in a similar manner, not as definitive concepts or propositions, but ones that offer promise for subsequent inquiry aimed at better understanding stress-coping. Further qualitative or mixed method research is particularly needed for advancing knowledge in this area and beyond. Additionally, the pluralistic and diverse (e.g., culturally, socio-economically) experiences of people with disabilities should be acknowledged and addressed in future research that focuses on stress-coping and its linkages to health and quality of life. As emphasized by Noonan et al. (2004), research of this nature is imperative if we are to understand "the interactions among disability and other aspects of one's salient identities (e.g., gender, ethnicity, class)" (p. 78).
Table 1. Outline of focus group questioning route and protocol Opening Comments * Welcome and statements regarding the purpose of the study, focus group procedures, and ethical issues. Opening Question * Please tell us a little bit about yourself. Introductory Question * Stress is something you hear a lot about these days because many people feel stressed. When thinking about your daily life, what does stress mean to you? Transition Questions * Is stress a negative factor in your life? If so explain how it is negative. * Is stress a positive factor in your life? If so in what ways it is positive. Probe: What is it about stress that makes it good or bad? Key Questions * What are the things that make you stressed? Probe: (a) Would you say it is primarily one thing that causes you stress or is it a number of different things added together? (b) Do you have any particular health concerns that contribute to your feelings of stress? Can you tell us more about this? (c) Besides possible health concerns, is there anything else that adds to your feelings of stress? (d) Does having a physical disability contribute to your feelings of stress? If so describe how. * What are the ways or things that you do or use to help you deal with stress in your life? Probe: (a) What are your typical ways of coping with stress in your life? (b) What role, if any, does leisure play in helping you deal with stress? (c) Would your thoughts change if you were thinking about vacations and/or holidays (alone and/or with other people)? Ending Questions * All things considered, what would you say is the major cause of stress in your life? * Of all the ways of dealing with stress that we've talked about tonight, which have you found to be most useful or effective in your life? * Is there anything about stress and stress-coping that we haven't talked about that you would like to raise before we leave tonight?
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(1) Originally, the intention of segmenting the focus groups by sex was to support a gender-based comparative analysis; however, the data were insufficient for this purpose. That is, men were under-represented in relation to the overall participant group (41% men vs. 59% women). Generally, it was more challenging to recruit male participants, and of the eight who confirmed their willingness to take part in the male-only focus group, only half actually attended the session. This low rate was likely exacerbated by severe weather (snow storm) on the day of the session. Unfortunately, the prospective participants' schedules and other bookings of the research facility made an alternative date impractical. For further discussion on this limitation, please see the discussion section of the manuscript.
University of Manitoba
University of Manitoba
Jennifer Mactavish, Ph.D., Faculty of Physical Education and Recreation Studies, Health, Leisure & Human Performance Research Institute, 313 Max Bell Centre, University of Manitoba Winnipeg, Manitoba, Canada R3T 2N2 E-mail: firstname.lastname@example.org
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|Publication:||The Journal of Rehabilitation|
|Date:||Jan 1, 2005|
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