One of the main causes of chronic pain in older people is spine deformity, an abnormal curvature of the spine. The purpose of this study is to improve understanding of the experience of chronic pain produced by spinal deformity in older people and understand how cultural factors may affect this experience. A qualitative study was performed with 10 older people. Participants were encouraged to describe a typical day in their life, including the factors that affect their pain and how their quality of life had been affected since experiencing chronic pain. The semistructured interviews were transcribed and analyzed using open coding. Pain caused by spine deformity produces disability, affecting how older people perform their daily activities, causing them to adapt their households and physical positions to perform these tasks, albeit slowly or incompletely. Chronic pain also affects emotional states and social relationships because older people become unable to undertake physical activities that they performed in the past. The close relationship with adult children and friends, typical in Latin cultures, is a source of comfort and support. At a community level, adaptation of public services (such as public transportation) must be improved.
Chronic pain is pain that lasts more than 3–6 months that adversely impacts the well-being of the affected individuals [
Pain interferes with the daily activities of people and disrupts every facet of their lives, causing a range of frustrations that stem from the invisibility of the pain and associated limitations in the diagnosis and treatment thereof [
In Chile, approximately 30.6% of its population will be over 60 years old by 2050 [
In relationships between older people and their adult children, there is a filial obligation that consists of the provision of economic and emotional support to the former during their old age. From the point of view of the child, this relationship is seen as a way of repaying the past debt of moral education and dedication bestowed upon them by their parent(s), whether or not they live in the same home in the present [
Non-oncological chronic pain is estimated to occur in 32% of the adult population in Chile, and approximately 70% receives some drug treatment for chronic pain [
In Chile, there is a National Program of Pain Relief and Palliative Care of the Ministry of Health, which is intended for cancer patients. Through this program, units focusing on pain have opened up both in private and public healthcare centers, which now also deal with other types of pain. Regarding pain management in Chile, several issues have been described, e.g., the long duration of symptoms, insufficient response to medical treatment, high use of anti-inflammatory drugs, and low use of specialized services in pain management [
Therefore, the objective of this work is to generate a more comprehensive understanding of the experience of pain in the daily lives of older people with spine deformity in Chile. Semistructured interviews were conducted with ten older people who endure chronic pain, with the objective of understanding their experiences of living with this condition in the Chilean context.
The study was exploratory, descriptive, and comprehensive, using a qualitative methodology, thereby enabling the reader to comprehend real-life experiences from the perspective of the participants [
We used a 32-item checklist for qualitative studies to report this work [
For this study, older people with chronic pain and spine deformity were recruited from a university hospital in Santiago, Chile, to participate in a semistructured interview. The interviews were conducted in Spanish by one (native Spanish-speaking) researcher during a period of 4 months in a location selected by the participant: either the hospital, a coffee shop or their own home. There was no pilot testing. Interviews were semistructured; participants were encouraged to describe a typical day in their life, including the factors that affect their pain and how their life had changed since experiencing chronic pain and spine deformity. Each interview lasted 30–60 minutes and was audiotaped and transcribed verbatim. Following the interview, participants were asked to complete three questionnaires with the objective of obtaining demographic data: Oswestry Disability Index (ODI) is a self-administered questionnaire used to evaluate limitation of activities regarding daily life [ Scoliosis Research Society-22r patient questionnaire evaluates the effect of idiopathic scoliosis and its treatment from the perspective of the patient in five domains [ World Health Organization Quality of Life (WHOQOL-BREF) survey assesses the perception of individuals in relation to their culture, value systems, and personal goals and concerns [
These questionnaires were selected because they are validated in their respective field and can give us information of the participants about their quality of life, their disability, and their deformity, which allow us to have a better profile of the group of participants.
Orthopaedic surgeons from the university hospital in which participants were recruited passed the relevant study information to the individuals involved. If they decided to subsequently take part, the first author contacted them to arrange the details of their participation. The inclusion criteria for participation were as follows: aged over 65, Spanish-speaking, resident in Chile, and experiencing spine deformity, and pain for at least six months. People with hearing or speech problems, as well as illiterate individuals (because the participant must fill out questionnaires), were excluded from participating due to the nature of the study.
The participants were eight women and two men, ranging in age from 67 to 79 (md = 73, SD = 4.13). Five of them were housewives, three were employed, and two retired. The participants had experienced chronic pain for an average of 5.1 years (min. = 1 year, max. = 18 years); six of them smoked (md = 21.5 years), one was a passive smoker, one did not smoke, and two chose not to answer the question about whether they were a smoker. The quality of life of the participants, according to the WHOQOL-BREF questionnaire, indicates that physical health and social relationships were the lowest scoring dimensions in this group.
Table 0%–20% (minimum disability): the patient can perform most of life’s activities 21%–40% (moderate disability): the patient experiences more pain and difficulty when sitting, lifting objects, and standing 41%–60% (severe disability): pain remains the main problem in this group and daily activities are affected 61%–80% (crippled): back pain affects all aspects of the patient’s life 81%–100%: these patients are bedridden or exaggerating their symptoms
Participant characteristics.
No. | Age | Gender | Type of spinal issue | ODI score (%) | SRS-22r score |
---|---|---|---|---|---|
1 | 68 | F | Spinal fracture and deformity | 100 | 1.36 |
2 | 79 | F | Spinal fracture | 56 | 2.57 |
3 | 76 | M | Spinal deviation and fracture | 4 | 4.68 |
4 | 76 | F | Spinal deformity | 38 | 3.50 |
5 | 76 | F | Multiple spine fractures | 40 | 2.50 |
6 | 74 | F | Spinal deformity | 44 | 2.82 |
7 | 67 | F | Spinal deformity, osteoporosis | 49 | 1.90 |
8 | 76 | F | Lumbar osteoarthritis | 40 | 3.00 |
9 | 67 | F | Vertebra fracture | 18 | 4.29 |
10 | 72 | M | Spinal deformity | 30 | 3.23 |
The level of disability was minimal for two participants, moderate for four, severe for three, and exaggerated for one person.
Data analysis was conducted in Spanish (language of the participants and researchers). Open codification (based on the grounded theory methodology) was used for data analysis, since the aim of the study was to describe and, therefore, understand the perspective of participants [
To ensure the methodological accuracy of the results, a triangulation strategy was used [
The study protocol was approved by the university ethics committee (15-339). Prior to the interviews being conducted, participants received oral and written information about the aim of the research, while written consent to the overall study was subsequently provided by each individual. Participants were informed that their involvement was voluntary, that anonymity would be guaranteed, and that they could withdraw from the study at any time.
Following the descriptive analysis of the 10 semistructured interviews with older people with chronic pain and spine deformity, five main categories emerged: impact of pain on the patient, pain control strategies, treatment by the doctors, daily routine, and social support. The model (Figure
Descriptive analysis: a diagram of the main categories.
Participants were asked about a typical day in their lives, including the main obstacles that they have to overcome and the factors (environmental or psychological) that affect the intensity of their pain.
In the morning, participants get up and out of their beds unaided before taking their medicine and having breakfast. They then wash. They explained how they had refurbished the bathroom in order to be able to wash and bathe more securely and without help. To provide brief context, it should be noted that it is common for the shower to be set within the bathtub in Chile.
After washing, participants get dressed. Some do this slowly albeit on their own, while others require help, for example, from their children:
The majority of participants do not work and therefore undertake domestic chores after the completion of their personal hygiene routines. A common theme that arose in the accounts of the participants is whether or not they receive assistance in performing these domestic chores. In particular, this included whether or not they employ a nana (housekeeper) to assist them in certain domestic tasks.
In the evenings, the participants rest or carry out light activities, such as watching television, sharing time with grandchildren, knitting or, in some cases, attending physiotherapy sessions or medical appointments. Furthermore, none of the interviewees are responsible for caring for their grandchildren. Rather, they mentioned that they simply visit them on a regular basis and frequently accompany them on daily activities.
Finally, participants go to sleep, but in some cases, they wake up at night, because they feel pain.
Pain produces disability and affects the way in which the participants are able to perform their daily activities. The majority can sit without problems, but they find other activities (walking, standing, and lifting items) more difficult.
Chronic pain affects the emotional state of the participants involved in this study. Each female interviewee claimed to have (or have had) symptoms of depression (e.g., anhedonia). They suffer so severely from depression that they feel like another person entirely.
Despite a number of participants using medicine for their depression, the majority of those who experience bouts of depression receive no medical attention for their symptoms. For example, they mentioned that rather than seeking out medical assistance, have sought support in spirituality via prayer:
The majority of participants feel that their social life has been limited and reduced by their pain. Two of the reasons for this are that they are unable to undertake the physical activities that they performed in the past and that they feel that other people are unable to empathize with them.
The primary means of public transportation in Santiago is via the subway system or bus service. During their interviews, the participants indicated that these forms of transport were problematic. For example, the movement of the buses increases their levels of pain; the drivers close the doors too quickly when passengers are trying to disembark the bus; and most subway journeys have to be undertaken standing up, causing additional pain. In addition, accessibility is poor, for example, a number of subway stations lack facilities for people with physical disabilities:
However, this category presented dichotomous elements, since other participants mentioned that pain does not affect them as much, for example, regarding sleep or mood.
The participants were satisfied with the social support they receive from their friends. These findings suggest that, although people have decreased their social activity, they still feel that their friends offer them support. This could be because friends maintain contact and provide support to them. For example, they mentioned that despite not being able to leave the house, their friends visited them at home:
Most of the participants live with their adult children. The additional household members provide help with transportation and chores and take care of them.
However, some of the participants feel that their family members do not fully understand their disease. Specifically, this problem stems from the limited communication that exists between members of the family, stating that these kinds of issues are not discussed in the household.
They felt they were bothersome to their family and that their family no longer took their seriously. This causes them to downplay things and withhold their true feelings.
Regarding medical support, the participants are satisfied with the treatment received to date and they would return to receive the same treatment again. The majority of the participants have sufficient information and understanding about their illness and treatment, to the extent that some of them were able to describe their medical conditions in detail.
It was difficult for participants to describe their pain. Rather, they recalled factors that contribute to its increase or decrease, or the feelings that it induces.
In order to carry out their daily activities, participants frequently adopt certain actions or physical positions that help to mitigate their pain. These actions and positions have been borne out of the personal experience of each participant and were not taught by a health professional. As such, this behaviour should be understood of as a reaction and/or way to simply get through the day. For example, they described the position that they adopt in order to do the washing up: “
The treatment received by participants in Chile with symptoms such as those experienced by the participants of this study includes medicine and/or physiotherapy sessions. Some participants use painkillers and the majority require this type of drug in order to be able to go about their daily lives.
Some participants additionally use alternative therapies to reduce their pain:
Participants mentioned that they have trouble sleeping at night and that in order to mitigate their pain, they have to find a physical position that allows them to go to sleep, or they take sleeping pills.
In spite of the difficulties of living with this disease, the participants interviewed in this study attempt to be positive and remain active. For example, “
Chronic pain is a complex phenomenon, composed of dichotomous categories and characterized by multiple components that modify and/or alter its manifestation and increase or decrease its intensity. These results are comparable to previous related research [
A further area of difficulty faced by the participants in their daily lives is public transportation; this restricts their ability to leave their homes to undertake personal tasks and attend doctor’s appointments or social activities. Chilean seniors like to communicate face to face or meet with members of their peer group in person, but problems in public transportation minimize the possibility that they can carry out this type of social interaction. This finding is particular to the location of our research, as many subway stations do not have elevators, some do not have escalators, and buses generally have a few high steps. Evidence of similar issues have been found in other developing countries, e.g., older women with vertebral fractures chose to use private, rather than public, transportation [
Chronic pain has further repercussions on personal experiences related to emotional well-being and social relationships. With respect to social relations, participants are prevented from attending social events or are limited to making plans in advance due to the unpredictable nature of the disease [
Regarding emotional well-being, the two participants who said that they had experienced no bouts or symptoms of depression as a result of their back pain were men. In contrast, the remaining eight participants, all of whom were women, indicated that they had either had or still have certain symptoms of or, indeed, diagnosed, depression. These findings coincide with evidence provided by a Canadian investigation in which people with chronic pain and who experience major depression are primarily older women [
Satisfaction with medical treatment and the trust of participants in their physicians is stated in interview testimony. The way in which participants perceive health care professionals, in regard to their availability, explanation of treatment, and susceptibility to the feelings of the affected individual, can be an important factor in their trust of the treatment received. Practitioners who try to form warm and friendly relations with their patients show more positive results in terms of patient health than practitioners who conduct their consultations in an impersonal, formal, or uncertain manner [
Faced with their chronic pain and spine deformity, the study participants stated that they try to retain a positive mental attitude and have developed coping strategies to mitigate the pain in the daily lives. These strategies include adopting antalgic positions, utilizing a range of devices, avoiding the execution of certain actions, taking pain medicine, and requesting assistance from others. Therefore, they have adapted to their new reality of living with a spine condition, particularly in relation to the chores and activities that they are able to carry out. It should be noted that the coping strategies of our participants have arisen from the basis of their understanding of their condition and their personal experiences; according to their interviews, the coping strategies were not taught or provided by health care professionals.
This study found that pain caused by spine deformity is a unique, personal, and subjective experience with no clear or specific definition. As a consequence, it is difficult for the individuals who experience this pain to characterize and describe what they feel, and it is equally hard for people who do not experience it to understand what it is like. This article has described the experience of older people living with chronic pain brought about by spine deformity, specifically in relation to the Chilean context. This research provides an in-depth understanding of the day-to-day life experiences of the subjects and how the chronic pain affects their quality of life from a cultural and contextual perspective.
The results suggest that these participants have very close ties with their children, so the family must be part of the treatment, so that the family can understand the situation they are undergoing. In addition, governments must improve the conditions of public transport, which helps people with chronic pain to move to medical care and meet with families and friends, thus improving their quality of life.
The interview data used to support the findings of this study have not been made available because they are restricted by the Pontificia Universidad Católica Ethics Committee in order to protect patient privacy.
The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
This study was supported by CONICYT/FONDECYT 1181162 (Chile). This project was supported partially by CONICYT-PCHA/Doctorado Nacional/2014-63140077, CONICIT, and MICIT Costa Rica Ph.D. scholarship grant, Universidad de Costa Rica.