Lifestyle Impact

STUDY OF PERSONAL IMPACT OF OSTEOPOROSIS AND VERTEBRAL FRACTURE AND IMPACT ON FUTURE LIFESTYLE

Paier, Geraldine S.
Specter of the crone: the experience of vertebral fracture.(Living With Chronic Illness). Vol. 18, Advances in Nursing Science, 03-01-1996, pp 27⁽¹⁰⁾.

This study sought to document the experience of women who suffer postmenopausal vertebral fractures. As the women described it, the essential structure of the experience of postmenopausal spinal fractures was an abrupt descent into disease, disability, and deformity. Each informant described significant challenges to her ability to continue to function as a whole, independent person. Constant pain, loss of independent function, changes in physical appearance, feelings of isolation, a sense of vulnerability, and an uncertain future were the hallmarks of the experience. This study identified specific areas of concern and suggests new focuses for nursing intervention with women with spinal fractures. An intervention program that incorporates education, programs to regain or maintain function, pain management, techniques to reduce stress and isolation, and promotion of self-care ability has the potential to enhance the quality of life for women with postmenopausal spinal fractures. Key words: osteoporosis, spinal fractures

OSTEOPOROSIS IS an enormous public health problem that is responsible for at least 1.5 million fractures in the United States each year. Vertebral fractures that occur as a result of postmenopausal osteoporosis of the spine are exceedingly common. It is estimated that 1 out of 4 women in the United States (9 million) will experience an osteoporotic fracture of the spine by age 60 and that 1 out of 2 women (18 million) will have had an osteoporotic fracture by age 75^[1] Osteoporotic fractures of the spine with attendant pain, deformity, and threat to independence affect many areas of life for older women and their families.

Osteoporosis is defined pathologically as an absolute decrease in the amount of bone leading to fractures after minimal trauma.(2) Genetic, mechanical, nutritional, and hormonal factors appear to be responsible for bone loss and subsequent fractures. Genetic factors influence fracture risk in that largeboned persons are more protected than small- boned persons.^[3] Black women, who have a greater bone mass than white women at all ages, have a lower incidence of symptomatic osteoporosis.^[4]

Physical exercise that places stress on the bones is responsible for variations in bone mass around the genetically determined level. Increased stress through exercise results in increased bone mass.^[5] In general, physical activity declines with age. Since bone mass is adversely affected by lack of physical activity, it follows that bone mass decreases as people age. There is also growing evidence that nutritional, hormonal, and chemical factors such as calcium intake, vitamins, estrogen levels, and alcohol use affect the attainment and maintenance of peak bone mass.^[5-7] The person most likely to be affected in osteoporosis is a sedentary, postmenopausal, white woman with a lifelong calcium deficiency.^[8]

There are few studies of the experience of spinal fractures secondary to osteoporosis from the women's perspective. The biomedical approach to osteoporosis dominates the literature with studies that investigate risk factors for development of osteoporosis and efficacy of various medical interventions at the microfunctional level of bone metabolism. Few studies have focused on the impact on the lives of women who have suffered a postmenopausal vertebral fracture. Roberto^[9] described the stress and adaptation patterns of women diagnosed with osteoporosis. Forty-eight percent of the participants in the study had experienced a vertebral fracture. All of the women perceived more stress in their lives since being diagnosed with osteoporosis, whether or not they had sustained a fracture. Pain, loss of roles, and other physical limitations were the variables identified that contributed to their feelings of stress. Hallal^[10] explored variables associated with life satisfaction in women with postmenopausal osteoporosis of the spine; life satisfaction was best predicted by income level, frequency of back pain, perceived internal control over health, and perceived social support. Various studies have concentrated on clinical profiles of back pain and disability and explored the relationship of those symptoms to bone density and number of fractures.^[11,12] Only one study,^[13] conducted at the University of Toronto, demonstrated the effectiveness of an educational, social, and exercise program on general well-being, stamina, mobility, and pain tolerance.

Currently, there is minimal information to guide nurses in planning intervention strategies that focus on the psychosocial variables associated with osteoporotic spinal fractures. Therefore, the study reported in this article sought to expand knowledge of the lived experience of women who suffer vertebral fractures that result from postmenopausal osteoporosis of the spine by describing the essential structure of the experience.

METHOD

This research project followed a descriptive, phenomenological approach, which seeks to describe the meanings of experiences from the perspective of the person experiencing them. The commonalities of meanings obtained from interview data across study participants were formulated into a description of the essential structure of the experience, in this case, the experience of living with spinal fractures secondary to postmenopausal osteoporosis. The criterion of saturation of themes, borrowed from the grounded theory approach, was used to judge the adequacy of the sample. Interviews were continued until no new themes were found.

Sample

Following institutional review board approval of the study, a purposive sample of five women who had experienced spinal fractures as a result of osteoporosis was recruited. One of the informants was recruited from a southwestern city, and four were recruited from a retirement community in the northeastern United States. All participants signed an informed consent agreement before the interviews. The sample size was determined on the criteria of 'data saturation."^[14] That is, additional subjects-were recruited to the point where no now themes emerged.

The participants ranged in age from 58 to 86, and all were white. One participant, who was 58, had experienced one spinal fracture about a year before the interview.-One participant, aged 86, had had three separate fracture experiences; the third fracture occurred 8 weeks before the interview. One participant, aged 75, had had two separate fractures, with the second fracture occurring about 7 weeks before the interview. One participant, who was 86, had had a total of seven fractures over a 20-year period that resulted in extreme kyphoscoliosis and constant pain; she did not report any recent spinal fracture. One participant, aged 70, had had two fractures, the most recent of which had occurred 6 years before.

The two participants who had sustained new vertebral fractures within 8 weeks before the interviews gave a rich immediacy to the description of the experience. Both of these participants were in obvious pain, as indicated by their facial expressions and gingerly movements, yet they were anxious to tell their story, feeling that talking about it would give some meaning to the experience.

Instrument

In phenomenological research, detailed descriptions are elicited through a minimum number of broad data-generating questions. For this study the following data generating questions were used: "Please tell me what your experience has been since your spinal fracture and diagnosis of osteoporosis. Please describe your experience as fully as you can, including all the circumstances, thoughts, and feelings you can remember." To encourage clarification arid in-depth perceptions, probing questions the interviewer asked--for example, "Please tell me more about that" and "Your husband's support was helpful?"--in response to an informant' s comment--for example, "My husband was there and that helped." An open-ended, audiotape-recorded interview was done with each informant.

Data collection procedure

The informants for the study were recruited through referrals from health care colleagues who were made aware of the project by the principal investigator. The principal investigator contacted potential informants by telephone, explained the purpose and method of the study, and obtained informed consent. All of those contacted agreed to participate. Participants were given the option of being interviewed in their own homes, the investigator's office, or another site of their choice. All interviews were conducted by the principal investigator. One participant was interviewed in the investigator's office, and four were interviewed in their homes at a time convenient for them. Before the interview, the participants were asked the data-generating question and were told to think about their experiences in preparation for the interview. Interviews lasted from 60 to 90 minutes. None were stopped due to time constraints or informant fatigue.

Data analysis and interpretation

The taped interviews were analyzed following Colaizzi's^[15] eight- step procedure: (1) the interviews were listened to several times and transcribed to get a sense of the meanings being conveyed, (2) significant phrases in the data were identified, (3) the phrases were restated in general terms, (4) meanings were identified, (5) the meanings were validated by an expert in phenomenology, (6) common themes from all the participants' data were identified and organized into a hierarchy of clusters and categories, (7) exhaustive description of the essential structure of the experience was developed, and (8) the essential structure of the experience was described in a narrative form. The investigator used several procedures to ensure the trustworthiness and credibility of the findings^[16]: The investigator checked each transcript against the original tape to ensure accuracy. After the investigator's analysis, a nurse researcher who had extensive experience using and teaching phenomenologic methods validated the findings to ensure that the formulated meanings remained closely linked to the data.

FINDINGS

In all, 484 significant statements about the experience of spinal fractures secondary to osteoporosis were extracted from the data and analyzed. The resulting themes were organized into five major theme categories with corresponding theme clusters. Following is a detailed description of each theme category and corresponding theme clusters. A pseudonym for each participant is used with the illustrative quotes.

Grappling-with the forces of pain

Statements concerning the dominance of pain in the lives of the participants accounted for nearly one-third (29%) of the significant statements. This was true for individuals who had sustained recent fractures as well as for those who were many years past the fracture experience. The participants remembered the pain of the spinal fracture as "the worst pain they had ever experienced." Pain remained a problem for all of the participants even years after the fracture event and was a continuing concern in the day-to-day management of their lives.

Incongruity of the pain

The participants could not link the sudden onset of the pain of the fracture to a precipitating incident. In the initial stages of the fracture experience, pain was therefore perceived as incongruous. The expected experience is that pain of a fracture is preceded by an untoward event such as a fall or an accident. In the participants' experience, there was no precipitating event, which added an unknown dimension to the cognitive processing of the event. Alma observed, "I didn't do anything. I was lying in bed sleeping and I couldn't get out of bed in the morning because every time I moved, I had this terrible pain." The incongruity of the pain of the fracture, together with the insufficiency of health care providers' explanations of spontaneous spinal fractures in osteoporosis, triggered a sense of uncertainty about the diagnosis in the participants and their families. Most of the informants had a hard time accepting the diagnosis of a spinal fracture. Alma explained, "I kept thinking--it's gotta be wrong. This has got to be a fractured rib, you know, just something else--it can' t be my back."

Pain as the choreographer of activity

The informants reported three dimensions to the pain experience: primary pain of the spinal fracture, continuing pain, and the constant threat of pain. All of these dimensions of pain had an impact on function in daily activities and created a sense of uncertainty about ability to return to their previous level of function. In the initial stages following a spinal fracture, pain was the primary focus of the experience. Pain became the "elephant in the living room." It commanded the complete attention of the participants and dictated exclusion or restriction of their usual daily activities. Alma noted, "All I did was go from the living room to the bedroom and back again." The role of pain in choreographing daily activities continued long after the usual time necessary for physiological repair of the fracture site. Indeed, all of the informants described a decrease in function because of continuing pain.

Continuing pain interfered with normal sleep positions and patterns. These sleep disturbances increased the informants' level of fatigue and contributed to their inability to resume their normal activities after the fracture. Eleanor related, "I'm saying that I'm awakened on and off again from about 4 o'clock in the morning on. And then I have to get up around 7-8 because I can't stay in bed because I hurt too much." Betty remarked,"It's always a surprise. Each one [pain] is, each time I wake up at night it's a surprise. I don't `want to go to bed because I don't-want to wake up--it's going to be there." Continuing pain also interfered with social activities and interactions. Betty reported, "I don't get out at all now unless some of my nice friends or my dear daughter come to take me. I can't do it since this last episode. I'm not comfortable enough-to sit at a table."

The constant threat of pain served as a further restraint on function. It was described by the informants as a twinge when turning the wrong way or the dull backache that begins after standing too long and is a constant reminder of the possibility of another fracture. Alma stated, "I loved gardening, and I was out there the other day and I got into it. It starts to hurt--my back starts hurting and I get scared." Eleanor observed, "If I walk any distance, my hack starts to hurt, so I would say that I'm restricted in walking other than in a pool."

Undependable pain management

All of the informants reported problems in managing their pain, even those who were long past a fracture event. The informants struggled with balancing the types and amounts of medication that provided pain relief with unpleasant side effects. Alma explained, "Everything he [the physician] gave me either upset my stomach or didn't do anything for the pain." Dorothy noted, "My mouth's so dry I can hardly talk now, and that's from the medicine, I guess." They described their fear of growing dependent an drugs for pain management and their frustration that effective pain management often meant that although-they were free from pain, they were still not able to do the things they desired because the medications left them feeling dopey and sleepy.

Pain as an isolator

Continuing pain and the difficulty of achieving effective pain control affected relationships with family and friends. Informants described having to forgo usual social activities because of pain. Dorothy related, "My granddaughter said `Nanna, we're going to take you out to dinner on your birthday.' But I couldn't go. I've got too much pain." Informants also described a change in attitude of family and friends toward them as a result of the perception that they were always in pain. They perceived themselves as less than full partners in social interaction. They had the feeling that their discomfort made other people uncomfortable, and they avoided social situations. Betty remarked, "[It's] almost as if you had some terrible thing that was catching, you know, that you were contagious and you just have to stay away from everybody."

Pain, the helpful protector

The constant threat of pain evolved over the long term from a fearful reminder of the fracture to a helpful reminder to the informants to pace or eliminate certain activities. It overlapped with vigilance in the goal of preventing another fracture. Pain became an accepted, albeit annoying, companion of daily life that required constant accommodation. Alma reported, "Sometimes when I bend over, it's like I get this pain across the middle of my back and it's like--you know--is that always going to be there? But, then sometimes I think well, maybe if l hurt a little bit that keeps me from doing things that I'm not supposed to do."

Self-taught resilience

In spite of severe pain and uncertainty engendered by the spinal fracture, participants described a process of self-taught resilience that promoted acclimation to the short-term and long-term effects of the spinal fracture. This was accomplished in two ways: information seeking and trial and error in physical activities.

Information seeking

Participants actively sought to inform themselves about spinal fractures and osteoporosis. In part, this exploration was engendered by the feeling that they were not given much information about the diagnosis, treatment, or prognosis of the disease. Alma stated, "He [the physician] told me that my bones were like that of an 80-year-old woman, and that was it. You know how doctors are, they don't tell you anything other than, well, you have this."

Information seeking included questioning health care providers, reading about osteoporosis in lay publications, seeking out lectures and conferences, and exchanging information with family and friends. Betty reported, "I just got busy and found out what I could. My daughter is a registered dietitian, and she right away started sending me things." Sometimes the information gained in these methods was more frightening than enlightening and added to the informants' anxiety about their osteoporosis. Alma related, "I went and listened to Dr G [lecture], and they showed x-rays of peoples [sic] that had osteoporosis. Gosh, you know, those bones looked terrible. They really looked terrible."

Trial and error in physical activities

The second part of the process of self-taught resilience was trial and error in physical activities. This dynamic was dictated by the need to conform to the physical constraints imposed by the spinal fracture while trying to maintain a usual level of day-to-day activities. This process was a continuing theme in the informants' lives from the description of physical activity at the onset of a fracture to continuing adjustments many years past a fracture experience. Eleanor observed, "I learned that the way to turn over in bed was not to lie full length but to get into fetal position and turn." Colleen explained, "If I'm aching too much, I get up and walk around, or if I'm aching too much walking around, I sit down, relax for a while, and I can handle it."

Specter of the crone

The potential of osteoporosis to change profoundly the informant' s image of self was a persistent theme present in these interviews. Although pain was a constant concern, the deforming aspects of the disease presented the most enduring threat to the informants' self- esteem. Pain can be disguised, but one cannot disguise the physical changes that are the hallmark of osteoporosis and spinal fractures. All of the informants were disturbed by the changes they noticed in their bodies after their spinal fractures. They were troubled and embarrassed about their abrupt loss of height and stooped posture. They used words that spoke profoundly of diminishment--shrunken, stooped, bent. These words are redolent of the image of a crone--a withered old woman. The informants all descried knowing someone in their lives who embodied the image of a crone, and they were haunted by that perception.

Reflection on the image

The informants reflected on women they had known who because of osteoporotic changes became crone-like. These reflections were accompanied by the fear that this kind of bodily transformation was in their future. Alma stated, "I can remember my Grandma. She had a, you know, what do they call it, the hump on your back and I--I don't want that. So, I remember her having that and she was, you know, real, real little." Betty described her memories at length:

The woman who taught me to swim . . . she had been very active all her life. She was a marvelous woman. She had osteoporosis, but she had it after I knew her. And it was such a shock, I remember I couldn' t believe it that this woman in such marvelous shape, I mean physically, that all of a sudden here she is with this, this debilitating thing. I mean she couldn't, it was bad, she couldn't move. So, I always keep that in my mind, you see, when this thing [fracture] happened. I thought, oh my goodness, this is a terrible thing I have.

Attention to posture

Most of the women described paying frequent attention to their posture. Degrees of straightness were confirmations that perhaps they would escape the inevitable stooping and not look as if they had osteoporosis. Alma remarked, "Sometimes I forget and find myself slouching, so [I] stand right up again." Betty stated, "My back is straight, the way it's supposed to be." Some of the informants resorted to various posture bras and braces to maintain a straight posture and prevent further spinal deterioration. However, most found them to be too uncomfortable to be able to continue wearing them.

For those respondents who had visible postural changes, confronting their own images was difficult. Coleen reported, "I notice that I hate to look at myself in the mirror. I don't realize until I see myself in the mirror and I'm horrified--how I got that way! I don' t know how I got so stooped!" Comments from family about changes in height and posture were particularly hard to bear. Alma related, " Sometimes they'll [grandchildren] grab me and say, `Gee, Grandma, you're shrinking.' You don't have to tell me that. [It's a] sick feeling, you know, there's nothing I can do about it--I can't get my height back."

Vulnerability and vigilance

The informants reported their fear of being vulnerable to further fractures. This sense of vulnerability was engendered by how fragile they perceived their bones to be. Dorothy noted, "I don't think these bones heal. At least nobody told me that they did." They felt threatened by activities that ordinarily would not pose a threat and were vigilant about living in a world that they viewed now as more dangerous for them. The fear of falling was a dominant theme. There was a pervasive feeling among the informants that the impact of subsequent fractures was additive to the disability, deformity, and pain of the disease and, therefore, were to be avoided at all costs. Betty stated, "This last time [fracture] was bad. Each time has been more severe."

Weighing, measuring, eliminating

Activities were weighed, measured, and eliminated according to the perceived risk of possible fracture. The informants reported being afraid to go out of the house, especially in bad weather. They were afraid of falling or tripping and causing a new fracture. They felt that their bodies had become awkward and stiff. Eleanor observed, "I think that there are some exercise classes that I would be worried about taking simply because I've become quite awkward in my movements. I feel like a penguin." Betty eloquently described these feelings of vulnerability and the elaborate steps that are taken:

I must say I just feel so vulnerable, you know. I'm almost afraid to go places because you feel as if anything's going to hurt you. You know, you could fall. I try to think ahead about everything, about all the movements I make. So, you see you're just kind of always ready for something to happen, you know. And then, when you least expect it, or when you're not prepared--that's when something happens.

Contingent hope

The experiences recounted by the participants described a long and uncertain journey toward adaptation to a chronic and potentially disabling disease. All of the informants ended the interviews with a view of the future characterized by the hope that they would not experience another fracture. Betty remarked, "I feel, well, if I can deal with this one, and then I know--have reasonable hope--that this won't happen again." They expressed a feeling of hope that they would escape the worst consequences of osteoporosis, but feelings of hope were opposed by fear of the unpredictable consequences of the disease. Hope was contingent on the perceived efficacy of lifestyle changes and outcomes of treatment. Alma wondered, "Shouldn't it be if you know you have it and do everything--it should get better--shouldn't it?"

Lifestyle changes

Changes in lifestyle reflected both an acceptance of restrictions on activities imposed by spinal fractures and a desire to become more active in the hope of preventing further fractures. Informants who previously had sedentary lifestyles were interested in exercise programs that might help to increase bone density. They were hampered in their pursuit by a lack of information and availability of exercise programs appropriate for women with osteoporosis. Alma reported, "All he [the physician] says is walk, walk, walk." The informants reported various levels of acceptance in activity restriction. Alma observed, "I don' t do as many things as I used to do. I was on the move all day long- -go here, go there--I don't do that anymore." Coleen echoed Alma's observations: "I miss certain things. I would love to be able to do things and, yet, in a way, I'm glad to be quiet."

Trying new treatments

There is no definitive treatment for osteoporosis of the spine. Innovative or experimental-medical treatment to increase bone density offered some hope to the informants in halting the progression of osteoporosis. However, hope was tinged with uncertainty that treatment would be successful. Dorothy explained, "Hopefully the shot might work that they're going to give me. But they said it helps--on some it works and some it doesn't."

DISCUSSION

The final outcome of a phenomenological study is to describe the essential structure of the experience. The essential structure of the lived experience of spinal fractures resulting from osteoporosis described in this research was based on the themes that emerged from the data. Although the themes are presented here in a linear fashion, the occurrence of the themes in the actual experience was not a progression from one theme to another but rather a process of simultaneous actuality. Themes influenced one another, and some themes were dependent on others for the dynamic to occur. For example, the theme "grappling with pain" influenced and reinforced other themes. On days when participants had less pain or were more in control of their pain, they were likely to be less vigilant and more hopeful.

The essential structure of the experience of postmenopausal spinal fractures consists of an abrupt descent into disease, disability, and deformity. The sudden and silent onset of a spinal fracture with its intense pain and swift decline in function, together with the continuing threat of a downward trajectory of the disease, had an enormous impact on these women's lives. Each informant described significant challenges to her ability to continue to function as a whole, independent person. Constant pain, or the threat of it, and uncertain pain control were the primary challenge to the informants' ability to perform their usual daily activities. Changes in the informants' physical appearance personified a particularly odious attack on their self-image. They mourned their loss of height and were constantly alert for signs of progression of their kyphosis. These two elements of the experience, pain of the fracture and the threat of deformity, appeared to be the impetus for the other elements of the structure. Self-taught resilience assisted the informants in adjusting to the physical restrictions imposed by the spinal fracture and impelled them to seek information about osteoporosis and spinal fractures. Vulnerability and vigilance were dependent on how each of the informants assessed her level of risk for subsequent spinal fractures.

The complexity of the experience of a spinal fracture goes well beyond impact on bone density levels. When one considers the total impact of constant pain, loss of independent function, changes in physical appearance, feelings of isolation, sense of vulnerability, and uncertain future, it is evident that the current approaches to intervention in postmenopausal osteoporosis are too narrowly defined. This study identified specific areas of concern that suggest new focuses for nursing intervention in women with osteoporosis. An intervention program that incorporates education, programs to regain or maintain function, pain management, techniques to reduce stress and isolation, and promotion of self-care ability has the potential to enhance the quality of life for women with postmenopausal spinal fractures.

REFERENCES

[1.] Gorrie TM. Postmenopausal osteoporosis J Ostet Gynecol Neonatal Nurs. 1982;11:214-219. [2.] Riggs BL, Melton JL. Involutional osteoporosis. N Engl J Med 1986;314: 1676-1686. [3.] Heaney R. Prevention of age- related osteoporosis in women. In: Holbrook TL, Grazier K, Kelsey JL, Stauffer RN, eds. The Frequency of Occurrence, Impact and Cost of Selected Musculoskeletal Conditions in the United States. Chicago, Ill: American Academy of Orthopedic Surgeons; 1992. [4.] Kleerekoper MB, Tolia K, Parfitt A;M. Nutritional, endocrine and demographic aspects of osteoporosis. Orthop Clin North Am. 1981; 12:547-558. [5.] Chestnut CH. An appraisal of the role of estrogens in the treatment of postmenopausal osteoporosis. J Am Geriatr Soc. 1984;32:96-100. [6.] Lane JM, Vigorita VJ, Falls M. Osteoporosis: current diagnosis and treatment. Geriatrics. 1984;39(4):40-47. [7.] Rasiz LG. Local and systemic factors in the pathogenesis of osteoporosis. N Engl J Med. 1988;318:818-825. [8.] Avioli LV. Postmenopausal osteoporosis: prevention versus cure. Fed Proc. 1981;40:2418-2422. [9.] Roberto KA. Stress and adaptation patterns of older osteoporotic women. Women Health. 1989;15(3):105119 [10.] Hallal JC. Life satisfaction m women with postmenopausal osteoporosis of the spine. Health Care-Women Int. 1991,12:99-110. [11.] Ryan PJ, Blake G, Fogelman I. A clinical profile of back pain and disability in patients with spinal osteoporosis. Bone. 1994;15(1):27-30. [12.] Cook DJ, Guyatt GH Adachi JD, et al. Quality of life issues in women with vertebral fractures due to osteoporosis.ArthritisRheum. 1993;36:750- 755. [13.] Chow R. Harrison J, Dornan J. Prevention and rehabilitation of osteoporosis program: exercise and osteoporosis. Int J Rehabil Res. 1989; 12(1):-49-56. [14.] Glaser B, Strauss A. The Discovery of-Grounded Theory. Chicago, Ill: Aldine; 1967. [15.] Colaizzi PF. Psychological research as the phenomenologist views it. In: Valle RS, King M, eds. Existential-Phenomenological Alternatives for Psychology. New York, NY: Oxford University Press; 1978. [16.] Guba E, Lincoln Y. Fourth Generation Evaluation. Newbury Park, Calif: Sage; 1989.

Geraldine S. Paier, PhD, MSN, CRNP Assistant Professor College of Nursing University of Arizona Tucson, Arizona

Paier, Geraldine S., Specter of the crone: the experience of vertebral fracture.(Living With Chronic Illness). Vol. 18, Advances in Nursing Science, 03-01-1996, pp 27(10).