Naïve understanding
The naïve understanding was based on the initial impression of the women’s narrations regarding the experience of their situation and the meaning they expressed concerning their transition process.
The narratives provided descriptions of living in turmoil and chaos, unable to find stability in their life since the fracture. The informants describe their situation as shifting periods of constant intense pain replaced by fear of rapid onset of pain. Even if the pain was the main cause of their problematic situation, a sense of fear was the aspect that dominated the narratives. This fear led to an altered sense of self and changes in identity, leading to decreased confidence in their own ability, which forced them to adapt daily activities owing to reduced physical function and pain as a constant companion. A sense of loss of freedom and feeling of being confined increased the desire to be involved and needed and not to become marginalized and untrusted.
They felt betrayed by a changing and unpredictable body and described grief and anger over their body’s frailty, which led to concerns of becoming a burden to themselves and others, risking that their significant others would get tired of taking care of them. They were not able to trust their bodies, which made them fearful and cautious in everyday activities, but they felt great satisfaction in managing to do what they could. They had a pronounced fear of falling and not being able to get up after lying down. Sometimes, they were so afraid of lying down in their beds that they preferred to sleep sitting up. They described a sense of helplessness and doubt facing a fragile body in an uncertain future, with memory and longing for what once was.
Structural analysis
The structural analysis of the interviews revealed fear and concerns as the most prominent experience. The VCF had thrown them into a new situation riddled with restraints and limitations, and their perception of their situation was similar regardless of the time elapsed since the initial VCF. During the interviews, the women came across as capable individuals, mostly through descriptions of the kind of individuals they once were before the fracture. They wanted to make sure that they were perceived as capable and willing individuals, but that they were simply left on their own in a difficult situation, not knowing what to do.
Struggling to understand a deceiving body
The women were aware of their bodily alteration in both function and appearance. They had gradually shrunk, developed a more stooped posture, and their belly had become more prominent. Functional limitations were caused through increased stiffness and physical fatigue, which made some of the women say that they could not manage to keep their back straight. It was not described as pain, but rather as a prostration in the back. These were all changes that many of the women had not noticed before the diagnosis of the VCF and were described as a bodily decay beyond their control.
Some of them felt they no longer trusted their bodies and as a result they had become more cautious in their movements and activities. They expressed a feeling of betrayal by their bodies that affected most aspects of everyday lives. Their life had become unstable, and they perceived their body as unpredictable and frail. They felt upset when they thought about activities they had enjoyed but no longer dared to do without extensive planning and foresight. To describe this, some of the women used the phrase “the head says yes, but the body says no.”
Breakthrough pain fueling fear
The initial pain was perceived as dreadfully intense and persistent, although it had changed in character over the years for all the women. For some, the pain had subsided in intensity and become more intermittent, while for others it had become constant and even. Regardless of intensity and frequency of the pain, the women described how they considered pain as a constant companion in their lives and that they just have to accept it.
Pain was a constant worry, either the women were experiencing severe pain or were afraid of severe breakthrough pain. Small movements that could induce sudden and strong stabbing pain could be movements of the arms, leaning forward, or just getting up from a lying position. The constant concern of doing involuntary or careless movements made them avoid unfamiliar and unpredictable situations. However, sometimes, despite the awareness of potential risks, they put their fear aside and went ahead and did something fully knowing that they would have to pay for it later.
They described the nights as especially troublesome, and sometimes they could not sleep through the whole night without waking up with severe pain. They tried to be careful how to position themselves in bed and many of them used sleeping pills to get some rest. For some of them, the bed triggered ambivalent feelings. Instead of being a place for relaxation it turned into a threatening trap that they might not be able to get up from, and this fear forced some of the women to sleep sitting upright in a chair.
They managed the breakthrough episodes of pain by balancing rest and simple activities. Many used analgesics, but had low confidence in their effectiveness. The drug effects were described as merely reducing the pain somewhat. Regardless of the intensity and frequency of the pain, the women described that they considered pain as a constant companion through life that they had become adapted to. The short moments when they were pain-free gave them a sense of being normal, but they always feared that the pain would recur and remind them of their injury when they performed any movements.
Fearing a trajectory into isolation
The women described feelings of boredom and loneliness due to social isolation, as previously common activities became an ordeal both for the women themselves but also for those around them. The constant presence of pain but also frustration of being unheard, not been taken seriously, and feeling restricted affected their mood, and the women knew that their bad mood was difficult to handle for relatives and friends.
They expressed a sense of entrapment and confinement in their homes, but also geographical limitation, due to fear, pain, and a sense of shame over their changing bodies. They talked about living day by day and that they had difficulties in planning their social life since a breakthrough pain could interfere with planned activities. They wanted to meet with friends but knew they could be forced to cancel with short notice. Hence, to reduce their sense of guilt for doing so, it was easier not to plan social activities and risk creating disappointment.
In the narratives, the experience of helplessness became obvious, which negatively influenced the women’s self-confidence. It was clear that they all valued autonomy and independence as important, and one of the worst thoughts was to be forced to leave their own homes and become institutionalized. In order to find a way to improve their health and to avoid developing dependency, they tried to understand why and what had caused their condition. They often felt that they were not being taken seriously by health-care providers, who saw them as untrustworthy and constantly referred them elsewhere. Despite increasing pain and discomfort, they felt they never got a thorough examination and ultimately they ended up being sent home with pain medication and advice to rest; in effect, no specific treatment at all. The women felt they were marginalized just because they were older and female and that they ought to accept a certain level of infirmities as part of a normal aging process.
They felt distrusted and met with reluctance by health-care providers and were always given low priority. All the women had continually been asking for radiographic examination and referral to the orthopedic department for a correct diagnosis. When they finally received the diagnosis of VCF, they were told that there was nothing more to do in terms of the injury and that they should rest and give it time. This was perceived as unsatisfying and frustrating; they describe feelings of being belittled. They felt that the care professionals saw them as unnecessary care seekers, and they felt ashamed when they were told that other patients where in greater need of care. An uninterested and indifferent attitude from health-care providers created a sense in the patient of no longer being significant and of being seen as a liability to society; in other words, they were no longer worth investing in but instead they had become a burden to society.
Concerns of creating feelings of guilt in their close family made some of the women diminish their symptoms. They withdrew from social contexts, as they assumed the burden on the family members would become too great. The thought of becoming dependent and a burden to others was described as appalling; they were afraid that people would get tired of them if they became too demanding.
Fearing an uncertain future
Many of the women expressed that they did not see themselves as having a future, which forced them to live day by day. An uncertain future was attributed to both increasing age, but also the consequences in life because of the fracture. The realization that the future may involve living with pain as a constant companion made it difficult to look ahead and to make plans for the future.
Many described their situation as hopeless. The injury in the back along with other ailments, related to increasing age, had made them lose their spark, and they saw life as gray and dull; life was not enjoyable anymore when they were in pain. Fear of sustaining a new fracture or causing severe pain together with the feeling of fatigue, not only physical fatigue but also mental fatigue in facing their situation, created a sense of being without a future.
Comprehensive understanding
The VCF was perceived, by the women, as a disabling condition affecting all aspects of their life. There were similar descriptions from all participants’, regardless of the number of years that they had lived with VCF. The comprehensive understanding was a description of a downward trajectory starting with mistrusting their bodies and an increasing fear related to unpredictable pain leading to increasing isolation and an uncertain future. Disabilities have been shown to be a dynamic process where transitions to a deteriorating function are more common than transitions to an improved health [
14,
34]. The transition process is described as a movement through three stages: an initial change/event, a stage of instability and distress, and a stage of balance and acceptance with an identifiable end-point [
19,
35].
In a recent study, it was argued that the actualization of self-care ability may facilitate healthy transitions. Successful self-care involves having continuous contact with health-care providers, being aware of a healthy lifestyle, being physically and mentally active, maintaining social relations with family and friends, as well as being satisfied with life and being able to look forward [
20]. The women’s descriptions, in the present study, suggest that the response from health-care providers could be seen as counterproductive from the self-care point of view. The participants lacked sufficient knowledge of their condition but showed engagement and turned to health-care providers for help and support. Their encounters with health-care providers were very discouraging, and the providers were seen as disinterested, which made the women feel diminished and belittled. They were forced to become their own health advocates in explaining their illness and its consequences to others who did not take them seriously. Health-care providers did not ask about their needs and did not meet their expectations regarding appropriate information or support. This finding is in agreement with other studies, which have shown that people with chronic illness, such as osteoporosis, are not asked about their needs or expectations for receiving the appropriate support or treatment, and this situation prevents a positive transition and reaching a stable end-point in the transition process [
11,
36]. Change in health creates a process of transition, and people in transition tend to be more vulnerable to risks that may affect their health perception [
19]. The transitional process for people with VCF has not been studied before, and the narratives indicate that this is both complex and multidimensional.