Coping With Preclinical Disability: Older Women's Experiences of Everyday Activities
Dr. Rebecca A. Lorenz, 1309 Childress Avenue, St. Louis, MO 63139. E-mail: firstname.lastname@example.org
Purpose: The purpose of this paper is to describe coping practices used by older women during preclinical disability.
Design: This paper was derived from qualitative data gathered during a larger multimethod longitudinal study. Twelve women (60 to 80 years of age) participated in baseline functional performance measures and then repeated in-depth interviews and participant observations over 18 months.
Methods: A hermeneutic approach was used to interpret the in-depth interviews, participant observations, and field notes using three interrelated processes of thematic, exemplar, and identification of paradigm cases to identify coping practices.
Findings: Women coped with functional decline, such as difficulty getting up from the floor, in many different ways. Coping practices were grouped into five themes: resist, adapt, substitute, endure, and eliminate.
Clinical Relevance: These findings suggest that nurses need to realize outward appearances may mask the level of effort required for older women to complete daily activities.
The process of aging is very individualized, shaped by health status, lifestyle, gender, socio-economic status, and many other factors. Nevertheless, everyone experiences a progressive deterioration of body systems, such as the musculoskeletal system, as they age. A recent review of the impact of aging on performance found that functional ability declines an average of 20% between the ages of 40 and 60 years, with the rate of decline accelerating in the 6th and 7th decades (Kenny, Yardley, Martineau, & Jay, 2008). Compared with men, women have a higher disease burden (Leveille, Penninx, Melzer, Izmirlian, & Guralnik, 2000) and endure more disability (Jagger et al., 2007).
The decline in functional ability, called the disablement process, has been conceptually modeled to provide a systematic view of the transitions that lie between the onset of disease or injury and emergence of disability, the inability to complete activities of daily living (Nagi, 1965; World Health Organization, 2001). One transitional state, labeled preclinical disability, occurs before functional decline creates a sense of difficulty when routine activities are performed (Fried, Young, Rubin, & Bandeen-Roche, 2001). During preclinical disability, older adults may be able to cope with functional decline by modifying task performance. Thus, coping practices that allow completion of daily activities despite loss of physical function are crucial to the ability to live well (Lazarus & DeLongis, 1983).
A method of identifying the presence or absence of coping practices would be helpful for nurses to accurately assess and guide older adults as they learn to cope with functional decline. Most existing performance measures, however, primarily assess difficulty or inability to perform specific tasks, such as bathing. The few instruments for identifying coping strategies used by older adults have been developed for specific populations, such as people living in nursing homes (Schwarzer & Schwarzer, 1996). Thus, they focus on older adults who have already experienced much loss of physical function. Therefore, drawing on the work of Lazarus and his colleagues (Lazarus, 1966; Folkman & Moskowitz, 2004), Benner (Benner & Wrubel, 1989), Merleau-Ponty (1962), and others, a hermeneutic approach was used to uncover the ways older women coped with preclinical disability within their environment.
The philosophical approach for this study was hermeneutics, which considers that action and context are inseparable. The hermeneutic focus on human activity in context provided a method to gain an enhanced understanding of the possibilities lived out by older women who are coping with functional decline. The decline in physical function during aging creates situations where environmental demand exceeds an older person's reserve. According to Lazarus (1966), this creates a stressful situation where the person perceives that something is amiss. The concept of transaction implies that stress is neither in the environment nor in the person (Lazarus, 1990). Rather, stress lies in the meaning of the situation for the person, which allows for a hermeneutic view of the disruption of smooth functioning (Benner & Wrubel, 1989) resulting from functional decline. Coping is the action taken to deal with that disruption.
Using a hermeneutic view of the person allows preclinical disability to be viewed as the inability to complete daily activities in habitual ways. For example, arthritis, a leading cause of mobility disability, is manifested clinically by an increased sedimentation rate. To the older adult it is represented by difficulty in buttoning shirts and tying shoes, perhaps leading to different choices in clothing and footwear. From this perspective, nurses must be knowledgeable about the disease but also need to understand disability as a disturbance in the patient's ability to function within their world. The meaning of that disability lies in its consequences (Bury, 1991)—in other words, how the loss disrupts everyday activities and relationships. The perceived outcome will influence future action; one will do what worked last time (Dreyfus, 1991). Coping practices, thus, evolve from the natural flow of experiences.
Because everyone's life experiences are different, coping practices available to different people may also be different. This would explain why people with the greatest number of disabilities are not always the ones who are least able to care for themselves. Little research has been conducted to examine coping practices used by older adults within their environment or elicit coping practices from the perspectives of older adults. Therefore, the purpose of this paper is to describe everyday practices used by older women to cope with preclinical disability.
This paper presents findings from a hermeneutic analysis of qualitative data collected during a larger multimethod longitudinal study. The longitudinal study design provided the opportunity to conduct repeated interviews and observations, which provided time to clarify understanding of previous statements and to seek evidence to confirm that the older women's measured functional status and narrative accounts were congruent or discrepant. Demographics and performance-based functional measures were used in this paper to describe the sample. The target phenomena were coping practices used by older women to continue activities.
Recruitment and Participants
Following approval from the institutional review board, recruitment commenced through a local hospital's community education programs. Women were eligible if they were 60 to 80 years old and nondisabled, defined as a summary performance score (SPS) of >4 on the Short Physical Performance Battery (Guralnik, Ferrucci, Simonsick, Salive, & Wallace, 1995; Guralnik et al., 1994). Older adults with scores of 4 or above adjusted for gender, age, and number of chronic conditions have been found to have 1.6 to 4.2 times risk of activities of daily living disability within 4 years (Guralnik et al., 1994; 1995). Measures of functional performance at baseline allowed for careful case selection and ensured that participants were not functionally disabled but experiencing some physical loss, therefore having to cope with decline in physical function in order to complete daily activities. Because recall of recent experiences was important in this study, participants had to be cognitively intact, defined by a Folstein Mini-Mental State Examination test (Folstein, Folstein, & McHugh, 1975) score above 17 or 24 based on level of education (Crum, Anthony, Bassett, & Folstein, 1993) and able to understand and speak English.
Interested women completed an in-home performance assessment to confirm eligibility. Once informed consent was obtained, women participated in the Short Physical Performance Battery (SPPB), composed of three performance measures: standing balance, 8-foot walk, and chair stand (Guralnik et al., 1994; 1995). Each of the performance measures are scored from 0 to 4 (0=inability and 4=highest level of performance). Scores are then summed to create a summary performance score (SPS) that ranged from 0 to 12, with a higher score indicating higher levels of performance.
Twelve women (10 Caucasian, 1 African American, and 1 Asian American) participated in this study; 10 of the women were married. At baseline, ages ranged from 62 to 80 years. Eight of the women had obtained a high school education (mean=12.9; SD+3.73 years). The number of chronic conditions per woman ranged from one to five (mean=2.5; SD+1.28). Seven women had a body mass index of ≥30 (mean=30, SD+3.75). None of the women smoked; however, five women reported a history of smoking. The SPPB SPS (mean=9.1; SD+1.24) indicated that this group of women had a high level of function. Difficulty existed primarily in the chair stand measure (mean 2.3; SD+1.29).
In-depth interviews and participant observations were conducted approximately every other month for 6 months, and then follow-up visits occurred at 12 and 18 months. The spacing of visits and study duration provided time for participants to reflect and notice functional decline and coping practices that were ongoing or emerging. Time between sessions also allowed for review of transcripts and field notes before the next session. This review clarified emerging themes and identified items that needed further clarification.
At each session an adapted version of the Stress and Coping Interview (Lazarus & Folkman, 1984) was used to encourage the women to describe occasions when they had encountered two types of physically challenging events. First, they were asked to describe an event with which they were particularly pleased or satisfied in terms of how they coped with the challenge. Then they described an event that was particularly stressful or where coping was problematic. This interview was conducted during each visit due to the temporal nature of stress (Benner & Wrubel, 1989). All interviews were audiotape recorded and transcribed verbatim by an experienced transcriptionist to provide text for analysis. The quality of the data was assured by review and correction of all transcripts by the author (Poland, 1995).
Each woman participated in four observation sessions. Observation sessions were scheduled approximately every other month during the first 6 months of the study, with each session lasting from 1 to 4 hours. The purpose of observing the women was to validate or clarify interview and performance data. Questions about observed behaviors prompted reflection and enabled participants to provide more information about activities and coping practices. For example, Barbara's time on the 8-foot walk indicated that she walked at a brisk pace (gait speed=0.32 s). However, during the third observation visit, when walked together, Barbara's walking pace was notably slower than mine was. When questioned, Barbara responded that she had to “step it up a bit” to keep up with others, indicating that the quicker gait speed was not her preferred pace. Timing and location of observations were based on the women's wishes and took place as the women completed activities, such as cooking, shopping, and exercising. Field notes recorded immediately after every interview and observation detailed my observations, impressions, and reflections. These notes became a part of the data.
Interpretive analysis, as described by Benner (1994), began with the first interview and continued throughout the study. The aim of using hermeneutic analysis is to construct an evocative description of human actions, behaviors, and experiences. Descriptions are rich, meaning they create recognition in the readers. The process is iterative as the researcher repeatedly moves from the data as a whole to parts of the data as significant sections of the texts are coded and grouped together for further interpretation. Women's narratives were compared and contrasted to identify similarities and differences in practices and meanings. This process condensed data into written case summaries with sufficient textual evidence to support analysis. Additionally, throughout the study, an interpretive group, which included experienced phenomenologists and doctoral students, read and discussed cases. Peer review provided the opportunity to reveal researcher bias and help confirm, disprove, or extend the emerging interpretations. Findings are described using excerpts from the women's narratives; all names have been replaced with pseudonyms.
The loss of physical function experienced by these women influenced how they coped with everyday activities. The women articulated the importance of being able to complete daily activities and be with family and friends. According to research evidence, the ability to move freely about the world is crucial to participating in meaningful activities, and being unable leads to increasing social isolation, loneliness, and depression (Mendes de Leon, Gold, Glass, Kaplan, & George, 2001). In this study, women said completion was important but did not have to be perfect as often or as quick as previously experienced. Two women, who visibly experienced greater functional loss and complained of more physical pain than other women during the study, reported that increasing amounts of effort were required to remain engaged in meaningful activities, such as going to church and being with friends.
The women provided vivid descriptions of bodily sensations or symptoms that they attributed to aging (Lorenz, 2009). These symptoms were central to the actions they used to cope with lost abilities. Coping practices were grouped under five themes: resist, adapt, substitute, endure, and eliminate, which ranged from resisting the effects of aging to eliminating activities (Figure). Two of the themes contained subthemes both across and within interviews.
Resist: “I fight to be like I’ve always been.”
Resisting included coping practices that maintained the present level of functioning. Resisting the effects of aging required effort, as demonstrated by Norma (age 70), “I fight to be like I’ve always been.” Women shared the belief that it was important to maintain normal activities. Helen (age 80) clearly stated this determination, “I’m not going to sit around and say, ‘Oh, I can't do this because I’m old.’ I’ll have to have a real physical challenge not to do the things that I want to do.” The coping practice of resistance was composed of two related aspects.
Being Satisfied with Less than Perfect During conversations about cleaning the house and doing yard work, the women described how they were satisfied with not completing activities as well as they had previously. As described by Norma (age 70):
I used to be a perfectionist, in my house and outside and I have learned to be happy with less than perfection. You don't have to have everything just immaculate and I’m a great deal happier since I’ve come to those conclusions.
Staying Connected With Family and Friends All of the women articulated the significance of being with family and friends. Virginia (age 66) said, “I don't let [trouble walking] interfere with my getting together.” Shirley (age 75) described how she managed to keep in touch with her grandchildren in spite of difficulty traveling:
We’re getting closer to our grandchildren, we e-mail them now. We finally found a way to get contact. They don't call on the phone. And if you call them and leave a voice mail; they never call you back. But, we e-mail and they e-mail us back.
Adapt: “You have to look for some way.”
As described by Alice (age 78), adapting meant finding a way to complete meaningful activities: “I can't change what's happening to me and I still want to go and I still want to do things, so you have to look for some way to help you do that.” Adaptations were described by the women during interviews and often seen by the author during observations.
Reducing frequency The women reported reducing the frequency of performing activities, such as climbing stairs or running errands. Dorothy (age 67) said, “[I] stop by the grocery story or by the drug store on my way home [after exercising] so I don't have to make an extra trip.” Similarly, Helen (age 80) reported: “I just stay downstairs [in the basement] and watch TV while I do the laundry.”
Reducing demand For most of the women, objects within their environment, such as cabinets and shopping carts, provided a way to continue to complete activities. For example, during our first observation visit, Carolyn demonstrated how she coped with difficulty standing by leaning on her elbows on the kitchen cabinet. She always leaned on the cabinet during any activity like stirring, washing, and chopping. For Alice (age 78), a small chair provided a way to clean house without difficulty:
When I clean house, I sit. I sit on that chair to dust all that stuff and then move to this chair. I don't bend over even in here [the kitchen]. I turn that chair around and get in the cabinets.
Every woman used stairwell banisters. As Barbara (age 79) reported, “I always use the banister going up and down the stairs especially when I’m out, like at church, and that's because you just finally realize that the banisters are here for a reason.” Besides banisters, observations revealed that women coped with back pain and reduced endurance by leaning on cars when walking through parking lots and leaning on shopping carts at the grocery store.
Being careful and taking time Women reported being careful and taking time when walking on uneven surfaces, such as their yards, stepping over objects, and bathing. The women needed to take care because their bodies felt “awkward” or “wobbly.” They also reported feeling slow, so they allowed extra time to get to appointments or complete daily activities. As Helen (age 80) said, “We still do everything we did 10 years ago or 5 years ago, only it takes longer.”
Forcing themselves to be active All of the women reported feeling stiff upon awakening and again after sitting “too long.” They coped by moving, which helped them regain some fluidity of movement. As described by Patricia (age 61), “When I get up in the morning, I am stiff. But I feel better once I move around. And I feel a lot better when I get to exercise.”
Devoting time for rest or relaxation Adapting to fatigue took the form of resting, doing things in moderation, and taking it easy. Alice (age 78) said, “About 2:30 I start pooping-out and then I have a cup of tea and sit for a little bit.” Once they rested, they reported being able to “get up and be ready to go,” prepare evening meals and complete other activities.
Accepting support from family and friends Friends and spouses provided physical support. Karen (age 67) “held on” to her husband to cope with difficulty balancing when having to stand for an extended time, like at holiday parties. Virginia (age 66) “put her hand on her friend's shoulder” to reduce her risk of falling when walking down stairs at theaters and restaurants. Carolyn's husband started “helping with the dishes.”
Substitute: “I can go to Bible study; I can play cards; and I can keep up with my plants.”
The women coped with inability to do activities by substituting activities that they could no longer do with ones that they could do. Virginia (age 66) believed:
What makes this time of life so really good is that all the things I always wanted to do but didn't have time to do, I can do. I can go to Bible study; I can play cards; and I can keep up with my plants.
Endure: “Maybe this is just part of the natural aging process for me.”
The women endured many of the invisible effects of aging, such as musculoskeletal pain and sleepless nights, without seeking treatment. Shirley (age 66) coped with chronic back pain this way: “I use arnica cream and sometimes take Tylenol. I don't want to go to the anti-inflammatory drug yet, not until I have to.” All of the women talked about enduring sleep disruptions caused by pain and nocturia. The women perceived interrupted nights as normal for people their age and only rarely reported talking to their doctor about this difficulty.
Eliminate: “I don't do that anymore. I couldn't do that anymore.”
When an activity like climbing stairs became too difficult, the women coped by eliminating. Alice explained: “You just sort of judge by your body. If it hurts, you don't do it, so you just do less all the time … we just kind of give it up.” Karen described the meaning of eliminating activities:
So dress it up as you might. The decline is difficult and it's hard for people who once were contributing members of society, contributing members of a family, to let go of driving, to let go of their homes, to let go of all those things that define them.
In summary, these findings illustrate the resilience manifested by older women as they begin to experience functional decline. The women described their lives and activities in positive terms as having found ways to continue activities. Thus, in this study, coping practices allowed completion of daily activities despite loss of physical function, therefore supporting their ability to live well. However, because the women were able to successfully cope with decline, the struggle experienced by older women during the very early stages of physiological decline may remain hidden. Examples mentioned here suggest that even apparently healthy, high-functioning older women experience difficulty completing daily tasks and participating in meaningful activities. None of the women described themselves as having a disability, which was seen as something that is permanent and for which nothing can be done. They were coping with inconveniences, which could be managed and solutions found, as described by the range of coping practices illustrated within the narratives.
These findings extend our knowledge of preclinical disability by describing coping practices used to overcome preclinical disability, focused on aging women living in their home environment. In this study, the women had a high level of function (SPPB SPS mean=9.1) and outwardly appeared to be functioning well. However, they were using a variety of coping practices to complete daily activities. Coping practices, such as reducing frequency and reducing demand, were consistent with findings previously reported by others (Fried et al., 2001; Wolinsky et al., 2005), supporting the idea that adaptations are occurring before daily activities are perceived as difficult.
The coping practices identified in the data were grouped into five themes: resist, adapt, substitute, endure, and eliminate. These findings are similar to those of Keller, Leventhal, and Larson (1989), who identified five categories of coping with aging-related changes: compensation, stress management, maintenance, involvement with others, and alteration in meaning. Similarly, Gignac, Cott, and Badley (2000) described four types of adaptations: compensations for loss, optimizing performance, limiting or restricting activities, and gaining help from others. In this study, the coping practices seemed to begin with resisting the effects of aging, when functional abilities were just beginning to fade, and to conclude with eliminating some activities as physical function deteriorated and the available options became more restricted. Eventually, elimination was the only option remaining, regardless of personality, available resources, or background. Future research is needed to verify the patterns of onset of coping practices in a larger, more diverse population of older adults. It is interesting to note that the theme “adapt” contained the largest number of subthemes that were supported across the majority of interviews. This finding may be related to the similar state of function, with small variation among this small sample of women. Thus, studies of larger, more diverse populations of older adults may find additional themes and subthemes.
The study emphasizes previous observations of the importance of staying connected with family and friends, rather than seeking formal social support, highlighting the importance of social relationships in aging adults. Formal social support consists of the availability of services, such as transportation. In contrast, social connections encompass shared and significant relationships with other people, usually family and friends. Similarly, Kelley-Moore and colleagues (2006) discovered that a dense social network slowed the perception of disability and preserved subjective health ratings. Taken together, these findings suggest that while clinicians and researchers focus on physical function to determine onset of disability, older adults may use a different set of criteria that emphasizes the importance of social relationships to decide when they become disabled.
Early identification of functional loss is the ultimate goal of disablement research because early treatment is believed to improve the likelihood for recovery or maintenance of a high level of function. Unfortunately, numerous studies have provided inconclusive results. Studies have provided evidence that preclinical disability can be identified by asking if activities are difficult, if they require a change in method or frequency, require more effort, or take more time than previously experienced (Manty, Heinonen, & Leinone, 2007; Weiss, Hoenig, & Fried, 2007). Yet, other studies’ findings suggest that the difference between change in method and frequency may be confusing (Miller, Andresen, Malmstrom, Miller, & Wolinsky, 2006) and that the term difficulty may not correlate with the theorized construct of difficulty (Porter, 1999).
In this study, a significant difference was found between the level of function as determined by the performance measures and the many coping practices revealed during the interviews and observations. Many coping practices, such as reducing the frequency or eliminating of activities, were not visible until the author became intimately acquainted with the participant. Observations provided the opportunity for the author to see some adaptations, such as leaning on kitchen cabinets while cooking, which appeared unnatural. Consequently, in total these data suggest that only the tip of the iceberg continues to be visible.
As described by Fried and colleagues (1991), preclinical disability is the submerged portion of the iceberg. The visible portion, the tip, represents individuals who are no longer able to cope successfully with their loss of physical function. Longitudinal investigations that include qualitative and quantitative measures of functional performance would help clarify people's interpretation and response to questions concerning difficulty and define areas of discrepancy between objective measures and observed coping practices. Findings would help determine the best method of identifying older adults with preclinical disability.
The finding that participants were enduring sleep disruptions, such as reduced total sleep time and frequent awakenings, without seeking medical evaluation and treatment is worrisome. Sleep disturbance, a common complaint in older adults, has been linked to impaired function (Goldman et al., 2007), depression (Paudel et al., 2008), falls (Brassington, King, & Bliwise, 2000), and impaired cognitive function (Blackwell et al., 2006). Another frequent complaint by women in this study was tiredness in daily activities, a common symptom of disturbed sleep, which has been associated with disability (Manty et al., 2007). These findings suggest that nurses should routinely assess older adults for sleep disruptions as nonpharmacologic nursing interventions have been shown to be effective (Cole & Richards, 2007).
Several factors limit the generalizability of the present study's findings. First, the sample was not random and included a small homogeneous sample of women who were primarily White. This study did not investigate whether coping practices differed according to functional loss, environment, or other variables. Therefore, future investigations should examine whether different coping practices are more effective for individuals according to circumstance or functional ability. Additionally, since the present findings are based on women's experiences, they may not be applicable to men.
Nevertheless, this study included several methods to ensure validity or rigor. First, the use of multiple data sources, including baseline functional assessments, plus interviews, observations, and field notes from repeated sessions collected over 18 months, provided a rich source of data that supported previous findings about preclinical disability. Finally, careful case selection, use of systematic methods of recording field notes and transcribing interviews, documentation of methodological decisions in a reflexive journal, and peer review of data analysis provided evidence to address the issue of content validity (Angen, 2000).
These findings suggest that nurses need to be aware that older adults who outwardly appear to be functioning well may actually be experiencing sufficient loss of physical function, which influences how they cope with everyday activities. Nurses could use a narrative approach to understand the older adults’ perspective on what they are actually coping with in their daily lives. Questions could be framed using the five themes identified in this study. Thus, going beyond identifying overt disabilities in daily activities, nurses could be more responsive to the unmet needs associated with preclinical disability among older adults.
This study was funded by NINR F31NR008985. It is currently funded by NINR T32NR009356.