Abstract
Objective
Care related pain (CRP) is generally under-estimated and rarely studied in rehabilitation as well as in general medecine. Beliefs about pain influence psychological distress, adjustment to pain and physical disability. In this sense, perceptions of CRP could limit recovery. This exploratory study aims to understand patients’ and caregivers’ subjective perceptions and beliefs about CRP.
Patients and methods
Questionnaires about CRP were submitted to members of the interdisciplinary team of a rehabilitation hospital and to patients with musculoskeletal complaints (cross-sectional design). Twenty patients were also individually interviewed (qualitative data). Four topics were addressed: frequency of CRP, situations and procedures causing CRP, beliefs about CRP and means used to deal with CRP.
Results
Seventy-five caregivers and 50 patients replied to the questionnaire. CRP is a very common experience in rehabilitation and it is recognized by both groups. Generally, the situations causing CRP reflect the specificity of rehabilitation (mobilization…) and are similarly perceived by patients and caregivers, with patients considering them as more painful. Beliefs about CRP are clearly different from those usually associated with pain. Both groups point out the utilitarian and the inevitable character of CRP. They differ on that, that patients had a more positive view about CRP. They associate it more often with progress and see it as acceptable at least until a certain limit. They are also able to perceive the richness of means used by physiotherapists to help them coping with CRP.
Conclusion
Our data may suggest new keys to motivate patient to be active in rehabilitation for example in choosing carefully arguments or words which may fit theirs’ beliefs about CRP, or in using various means to manage CRP. Promoting the use of relational competences with chronic pain patients and of a patient-centred approach may also be a concern in training caregivers.
1
Introduction
In painful medical situations, treatments are targeted to reduce pain. However, care and medical procedures may also produce the so-called “care related pain” (CRP) which is rarely studied in adult medicine, with the exception of surgery and oncology. Moreover, only the impacts of specific interventions known to be painful were generally investigated . Few studies have pointed out that several routine procedures are major sources of pain. A survey observed that 64% of patients hospitalized in a French university hospital reported pain during daily care . Recently, a cross-sectional survey showed that 55% were concerned by CRP . Mobilization, treatment and clinical examination were recognized as being responsible for 37% of all painful situations, for 66% when only severe pain was considered. Rehabilitation medicine is interested in pain reduction and improvement of functioning but little data exist on pain prevalence. This data suggests that nearly 100% of rehabilitation patients experienced pain and especially patients with musculoskeletal or neurological conditions, the most frequent reasons for rehabilitation . The rehabilitation techniques may also promote discomfort or pain even though the common opinion is that physical therapy is generally well-tolerated and satisfying for patients . For instance, in the Beaudreuil’s study there was no significant CRP during functional rehabilitation for chronic low back pain . Nevertheless, patients with pain or antidepressant medication were more numerous at the end of the study. Surprisingly, as far as we know, none has explored the prevalence of CRP for example during joint mobilization or gait training. It could be of paramount importance to improve our knowledge on CRP as it might be an obstacle for progression. Pain is also a cognitive and affective process. Cognitive-behavioral approach shows that beliefs play an important role in adjustment to pain . Catastrophization and fear–related pain may diminish the patient’s ability to cope and to take off pain from his mind . They may lead to avoidance of movement and reinforce the vicious circle pain-disconditionning-distress . Furthermore, caregivers have difficulties in estimating pain and their own pain beliefs influence their prescriptions and recommendations . To our knowledge, only one qualitative study compares patients’ and caregivers’ beliefs about CRP (in 12, respectively 14 subjects) and found different views: patients’ perception is not homogenous including negative and positive vision. Caregivers’ perception more often emphasizes the positive dimension.
Our interest in CRP was motivated by our clinical experience in daily practice. Asking patient to move or to make some exercise despite pain requires to be able to explain the reasons and to talk about this kind of pain caused by treatment. The way to deal with it depends on caregivers’ beliefs as well as patients’ ones. The aim of this pilot survey was to identify the subjective perceptions of patients and caregivers about CRP, such as its frequency, situations causing it, beliefs and helpful means to manage it.
2
Methods
This study was realized in a tertiary rehabilitation hospital specialized in treatment of persistent impairments after trauma. Most of our inpatients were blue collar workers and took part in a rehabilitation program after work, leisure or traffic accidents. All the caregivers of the interdisciplinary team (medical doctors, physiotherapists/occupational therapists, nurses) and 53 patients hospitalized for musculoskeletal trauma, since at least 2 weeks, received a questionnaire about care related pain (CRP). Only chronic pain patients were included. Patients with somatoform disorder and/or lesion of the central nervous system as well as patients who were not fluent in French were excluded (the hospital is located in the French part of Switzerland). Due to the exploratory characteristic of the study and due to the lack of data in the literature or preliminary results, it was not possible to calculate the sample size but we care for having a representative sample of our population .
Two questionnaires, one for patients and one for caregivers, were built for this survey, inspired by the few existing data. They address the same topics but differ in the way in which questions and answers are presented. This choice is linked to our interest in grasping as much as possible everyone’s experience. Caregivers, as experts, refer to a scientific knowledge, use a technical language, are used to reflect on their work. Patients have above all a practical knowledge coming from the exercise done in rehabilitation. The questionnaires were composed of multiple choice questions and of open questions. A summary of the two questionnaires is presented in Table 1 . To get more information from them, we also conducted an individually semi-structured interview with 20 patients essentially based on the open questions. Interwiews were recorded and transcripted and a content analysis was made . The preliminary analysis of the data was used to determine the saturation. The choice of individual semi-structured interview was based on two reasons. Firstly, the research question was already focused on a precise point (i.e. care related pain) and secondly individual interview are designed to address a larger panel of information than focus group, which was an advantage for this exploratory research. The questionnaires explore subjects’ subjective perceptions on four topics: frequency of CRP, situations and procedures causing CRP, beliefs about CRP, means used to deal with CRP. Three topics, frequency, beliefs about CRP and means used to deal with CRP include open question. For the first topic, the frequency of CRP, the subjects had to estimate the extent to which they were confronting to it on a 4-point Likert scale (always – often – sometimes – never). Caregivers were also asked whether they consider CRP as a problem for their practice (yes, no, partly); if yes, of which kind (open question). Patients were asked about their actual level of pain (EVA 0–100 mm), about the pain they could tolerate (EVA 0–100 mm), and about their anticipations of CRP in rehabilitation (yes, no, yes but not so much). For the second topic, situations and procedures causing CRP, caregivers evaluated 29 techniques or situations on a 4 point scale (for example, does mobilisation provokes pain? always, often, sometimes, never). Patients evaluated 15 techniques and responded in terms of yes/no/i don’t know. Table 2 presents the lists submitted to the two groups. Beliefs (topic 3) and means used to deal with CRP (topic 4) were introduced differently to the patients and the caregivers. To the patients, we suggested to imagine a specific context with the following instruction: “Imagine now that you are in physiotherapy and your physiotherapist asks you to do something which causes pain”, and then we present the questions. The reason is that it is not so easy for them to distinguish pain from care related pain. Putting the patient in a very concrete situation may facilitate the accessibility to the experience. In rehabilitation, all patients are followed in physiotherapy; this motivates the choice of the context. For the third topic, beliefs, caregivers and patients were asked to judge in terms of yes/no whether CRP are normal, severe, acceptable, useful and necessary and then to argue their answers. These adjectives are frequently used when talking about CRP and commonly used one for each other. The fourth topic, means used to deal with CRP, was addressed differently for the two groups. Patients answered open questions such as “what can the physiotherapist do to help you cope with CRP?”, “What is the most useful for you in these moments?” Caregivers evaluate, in terms of yes/no, the usefulness of 25 technical or relational means (technical means are fango, massages…, relational means are reassurance, distraction…) to help the patient to tolerate CRP. Table 3 presents the list submitted. Then, they freely described their favourite means.
| Patient | Caregiver | |
|---|---|---|
| Topic 1: frequency of CRP | ||
| Frequency of CRP | Multiple choice: always, often, sometimes, never | Multiple choice: always, often, sometimes, never |
| Pain | ||
| Actual, tolerated | EVA (1–100 mm) | |
| Anticipation of CRP | ||
| Problems with CRP | Multiple choice: yes, no, yes but not so much | Multiple choice: yes, no, partly |
| Open question: which one? | ||
| Topic 2: situations and procedures causing CRP | 15 techniques | 29 techniques |
| Evaluation of techniques and procedure inducing CRP | Multiple choice: yes, no, I don’t know | Multiple choice: always, often, sometimes, never |
| Topic 3: beliefs about CRP | Context of physiotherapy | General context |
| Arguments used to explain CRP | Are CRP normal, necessary, useful, acceptable, not severe? | Are CRP normal, necessary, useful, acceptable, not severe? |
| Multiple choice: yes, no | Multiple choice: yes, no | |
| Open question: why? | Open question: why? | |
| Topic 4: means useful to manage CRP | Context of physiotherapy | General context |
| Evaluation of tools and techniques | Open question: what does your physiotherapist for helping you to deal with CRP? What is the most useful for you in these moments? | 25 tools and techniques Multiple choice: yes, no Open question: describe freely what you do with the patients when he is suffering of CRP? |
| Caregivers | Patients |
|---|---|
| Splints or brace confection Muscle strengthening Tracheal aspiration Physiotherapy/cccupational therapy assessment Postures Installation in bed Ulcers, wounds debridment Mobilisation–manuel therapies Injections – blood samples Fango Vibralgic Intermittants bladder catheterism Whirlpool Strechting Dressing–undressing Skintonic Paraffin Weight bearing Rectal examination Ultrasounds Electrotherapy Transfers Shock wave X-ray examination Walking Dressing changes Ice Massage–drainage Medical examination | Making stretching Dressing changes Infiltrations Taking medication Making moving the injured part of the body Maintening a posture X-ray examination Walking Making exercices Pressing on the injured part of the body Installations or position changes in bed or in chair Injections Inserting or removing a catheter (urinary for example) Electromyography (examination of the neurologist using small needles in legs or in arms) |
| Techniques | Relational – communication |
|---|---|
| Massages Electrotherapy Fango Ice Stretching Hot baths Whirlpool Shock wave Breathing Paraffin Desensitization Relaxation Music Local anesthesia Ointments–anaesthetic patch Others?… | Explain the CRP Reinsure Minimize the importance of this pain Prevent the patient about the potential pain Distract the patient Just say “it’s hurt” Gaze Say nothing–do nothing Favor collaboration with the patient Use the Visual Analog Scale (before-during-after) Others?… |
Qualitative analysis was used with answers to open question (in questionnaire or in interviews) in order to find categories of arguments . Content analysis was made by two independent researchers (CF and RH). In case of disagreement, a consensus was found between them. The process of deriving the themes was inductive. Descriptive statistics on these data were used to analyze differences in frequencies (contingency tables; Chi 2 ). Analyses were done with Stata version 11.0 (College Station, Texas 77845 USA). The protocol was approved by the ethics committee of the local medical association (January 2006) and the data were processed in accordance with the ethical principles of the Declaration of Helsinki.
2
Methods
This study was realized in a tertiary rehabilitation hospital specialized in treatment of persistent impairments after trauma. Most of our inpatients were blue collar workers and took part in a rehabilitation program after work, leisure or traffic accidents. All the caregivers of the interdisciplinary team (medical doctors, physiotherapists/occupational therapists, nurses) and 53 patients hospitalized for musculoskeletal trauma, since at least 2 weeks, received a questionnaire about care related pain (CRP). Only chronic pain patients were included. Patients with somatoform disorder and/or lesion of the central nervous system as well as patients who were not fluent in French were excluded (the hospital is located in the French part of Switzerland). Due to the exploratory characteristic of the study and due to the lack of data in the literature or preliminary results, it was not possible to calculate the sample size but we care for having a representative sample of our population .
Two questionnaires, one for patients and one for caregivers, were built for this survey, inspired by the few existing data. They address the same topics but differ in the way in which questions and answers are presented. This choice is linked to our interest in grasping as much as possible everyone’s experience. Caregivers, as experts, refer to a scientific knowledge, use a technical language, are used to reflect on their work. Patients have above all a practical knowledge coming from the exercise done in rehabilitation. The questionnaires were composed of multiple choice questions and of open questions. A summary of the two questionnaires is presented in Table 1 . To get more information from them, we also conducted an individually semi-structured interview with 20 patients essentially based on the open questions. Interwiews were recorded and transcripted and a content analysis was made . The preliminary analysis of the data was used to determine the saturation. The choice of individual semi-structured interview was based on two reasons. Firstly, the research question was already focused on a precise point (i.e. care related pain) and secondly individual interview are designed to address a larger panel of information than focus group, which was an advantage for this exploratory research. The questionnaires explore subjects’ subjective perceptions on four topics: frequency of CRP, situations and procedures causing CRP, beliefs about CRP, means used to deal with CRP. Three topics, frequency, beliefs about CRP and means used to deal with CRP include open question. For the first topic, the frequency of CRP, the subjects had to estimate the extent to which they were confronting to it on a 4-point Likert scale (always – often – sometimes – never). Caregivers were also asked whether they consider CRP as a problem for their practice (yes, no, partly); if yes, of which kind (open question). Patients were asked about their actual level of pain (EVA 0–100 mm), about the pain they could tolerate (EVA 0–100 mm), and about their anticipations of CRP in rehabilitation (yes, no, yes but not so much). For the second topic, situations and procedures causing CRP, caregivers evaluated 29 techniques or situations on a 4 point scale (for example, does mobilisation provokes pain? always, often, sometimes, never). Patients evaluated 15 techniques and responded in terms of yes/no/i don’t know. Table 2 presents the lists submitted to the two groups. Beliefs (topic 3) and means used to deal with CRP (topic 4) were introduced differently to the patients and the caregivers. To the patients, we suggested to imagine a specific context with the following instruction: “Imagine now that you are in physiotherapy and your physiotherapist asks you to do something which causes pain”, and then we present the questions. The reason is that it is not so easy for them to distinguish pain from care related pain. Putting the patient in a very concrete situation may facilitate the accessibility to the experience. In rehabilitation, all patients are followed in physiotherapy; this motivates the choice of the context. For the third topic, beliefs, caregivers and patients were asked to judge in terms of yes/no whether CRP are normal, severe, acceptable, useful and necessary and then to argue their answers. These adjectives are frequently used when talking about CRP and commonly used one for each other. The fourth topic, means used to deal with CRP, was addressed differently for the two groups. Patients answered open questions such as “what can the physiotherapist do to help you cope with CRP?”, “What is the most useful for you in these moments?” Caregivers evaluate, in terms of yes/no, the usefulness of 25 technical or relational means (technical means are fango, massages…, relational means are reassurance, distraction…) to help the patient to tolerate CRP. Table 3 presents the list submitted. Then, they freely described their favourite means.
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