Perspectives on Creating a Chronic Pain Support Line in Portugal: Results of a Focus Group Study among Patients and Healthcare Professionals
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design and Setting
2.2. Recruitment and Sampling
2.3. Participants
2.3.1. Healthcare Professionals
2.3.2. Patients with CP
2.4. Data Collection Procedures
2.5. Analysis
2.6. Data Sharing
3. Results
3.1. Theme 1: Support Available for Patients
3.2. Theme 2: Perceived Patients’ Difficulties
3.3. Theme 3: Perceived Patients’ Necessities
3.4. Theme 4: Creation of a CPSL
“Because it is often the doctor acting as a therapeutic tool (…),I present myself full of energy, full of positivism, full of optimism, full of ideas, that I will be able to change the patient’s life (…). At the end of the day, I am a wreck!”—Professional 2
“I often feel empty… Completely consumed.”—Professional 1
“(…) It is true, the lack of health education, not only among patients but also among us, professionals, makes it all the more difficult.”—Professional 3
“(…) this line could be a way of having more equality, as it can be accessible anywhere in the country.”—Patient 5
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Chronic Pain Patients | |
---|---|
Theme | Description |
Support available for patients | Includes the existing support systems, their accessibility, and ideas on how to ameliorate them. |
Perceived patients’ difficulties | Refers to the many difficulties patients with CP face, from the diagnostic to living with the disease for years. |
Perceived patients’ necessities | Includes the main perceived needs to be addressed, identified by patients with CP. |
Creation of a chronic pain support line | Includes opinions, characteristics that must be present, what must be avoided, and foreseeable difficulties from a patient perspective |
Healthcare professionals | |
Theme | Description |
Support available for patients | Includes the existing support systems, their accessibility, and ideas on how to ameliorate them. |
Perceived patients’ necessities | Includes the main perceived needs to be addressed, identified by healthcare professionals during their activity. |
Creation of a chronic pain support line | Includes opinions, characteristics that must be present, what must be avoided, and foreseeable difficulties from a healthcare profession perspective. |
Theme 1: Support Available for Patients |
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1.1 Hospital pain units “I go to my pain doctor. It’s in the hospital, we have to call or if we show up we talk to the nurse. We always end up being attended to.”—Patient 1 “We also have a phone line for our patients (…) that turns out to be much more of a kind of psychological and emotional support.”—Professional 2 |
1.2 Family physician “That’s what’s important, is that at the Pain Unit they talk to us. The FP is very different; there is not much time for talking, as the doctor is overworked (…) giving the impression that he doesn’t even look at us.”—Patient 5 “(…) there is a minimal percentage of patients who are followed up in Pain Units. We dare say everyone else is followed by their FP.”—Professional 1 |
1.3 Emergency services “Going to the emergency services is a mistake because the professional who is there does not know how to assess our pain. If we have any other disease, he does not even waste time trying to understand what kind of pain the person has.”—Patient 1 |
1.4 Information available about CP “(…) because nobody talks to you about pain dedicated appointments, not in hospitals nor in primary health care centers.”—Patient 5 “I tell them to research this topic, consult this website (…). In our unit we have some leaflets that explain a little about pain and how to adapt to the pain situation, how the Pain Unit works, etc.”—Professional 2 |
Theme 2: Perceived patients’ difficulties |
2.1 Feeling misunderstood “I used to go to the doctor, I complained of pain, but as I could not explain what I was feeling or verbalize the intensity and cause of the pain, it ended making me feel blocked (…).”—Patient 3 “I think people feel misunderstood. And since it’s not a visible thing, it is a problem that exists even within the family, is it not? The husband does not understand, the parents do not understand, nobody understands.”—Professional 2 |
2.2 Difficulty in asking for help “Experiencing what I was experiencing and what I was feeling was very complicated… asking for help? No way (…) what I have also seen is that people in this situation, especially in the early stages, are somewhat reluctant to seek healthcare.”—Patient 3 “I think people have difficulty…they think like “it’s pain, just bear it” and do not seek help (…).”—Patient 1 |
2.3 Misjudgment of complaints and delay of diagnosis “From the moment the person starts to feel it and looking for health professionals because she feels constant pain, until having a diagnosis, many years pass. First, they will investigate and discard all possibilities, until they decide we have CP because of an X or Y pathology. With all this, around 6 years go by.”—Patient 3 |
2.4 Difficulty accepting the diagnosis “I will give my example: before I was diagnosed and before I accepted CP I was angry, so for me a CP diagnosis was not seen with good eyes, despite actually having pain.”—Patient 3 |
2.5 Gender bias “If we are treated by male doctors, they have the idea that women are melodramatic, and very emotional, and the first thing they think of is always depressive syndrome. Sorry but this is true.”—Patient 2 |
Theme 3: Perceived patients’ necessities |
3.1 Emotional and psychological support “In times of crisis and pain, we would just like to have someone we could talk to, to calm us down (…).”—Patient 2 “We also have a line for our patients (…) with strong psychological and emotional support, a lot of listening, giving expression to, allowing the expression of feelings”—Professional 2 |
3.2 Effective communication skills “Of course, listening is essential. The person on the other end must have an exceptional ability to listen, to respect the silences, have communication techniques, some psychotherapy tools.”—Patient 7 |
3.3 Scientifically reliable information “Dialogue is really important (…), and scientific information. Hence the importance of scales and pain assessment. (…) people must have scientific knowledge, I have no doubt about that.”—Patient 2 |
3.4 Advice and coping mechanisms “Sometimes we are so desperate and confused that the fact that a professional is asking basic and logical questions makes us open our minds and realize “I still haven’t done everything I could”. (…) I would like for the person to be an advisor and say: “Look, try this, try that, do this, apply hot water, apply cold water…”, a person who would guide us.”—Patient 1 “Just listening is not enough, if we do not implement strategies with our patient and try to get him to establish other focuses of attention, make him find other anchors in life besides his pain (…).”—Professional 1 |
3.5 Limitless support “I would have to know that there will be someone who knows how to listen and help during the entire process, without time limitations. (…) I want to feel that the person on the other end is holding my hand and will not let go until I am ok.”—Patient 7 |
3.6 Opportunity for sharing common experiences “I think that a group session/appointment would be a good option to consider. Chronic pain patients frequently state the need they have to feel understood, sharing experiences and stories would be a great option.”—Professional 4 |
Theme 4: Creation of a CPSL |
4.1 Support line functionality “It is fundamental to have someone who deals with pain closely, because dealing with something is very different from learning about it and that makes all the difference (…). It would be good for those on the other end of the line to have knowledge.”—Patient 3“ We have to have very well-prepared people on the other end of the line, who understands what this concept of CP is, so as not to be immediately alarmed if the patient says he has 7 or 8 pain intensity.”—Professional 1 “Whoever is on the other end of the line has to have a very good understanding of analgesic schemes (…).”—Professional 2“ The issue with algorithms, for me, is that they will only lead to very clinical, very medical things, and we want listening, empathy, all not so mechanical (…). This [the scope of action of the line] must be extremely well-defined (…) we need to define it, so that there are no doubts on the part of the patient who calls (…). There must be clinical safety for both patients and professionals.”—Professional 5 |
4.2 Support line requirements “The support line should act throughout the entire process. (…) Whoever is on the line must know how to direct and adapt the advice given to the patient and his pathology.”—Patient 3 “It would be essential to be able to provide good quality information [to the patients].”—Patient 2 “(…) being able to ask for help anonymously and always respecting me as a person in pain.”—Patient 7 “Men may also want to be attended to by men… we have issues of daily life and sexuality.”—Patient 6 (Male) |
4.3 What to avoid in a support line “The line could never give an authorization to do something, it should only give the correct information to the patient.”—Patient 7 “It makes sense if there is mostly active listening, coping mechanisms, not much more than that.”—Professional 2 |
4.4 Foreseeable difficulties “There needs to be someone, 24/7, available to answer calls. This part of the operationalization may be difficult to plan, it is necessary to mobilize a lot of people (…) and sponsorship to pay for the line. Oh, money, money!”—Patient 2 “Yes, it is important to have permanent possibility of contact, but in terms of resources it will be quite complicated.”—Patient 7 “But we have to beware, because superimposed on a well diagnosed CP can be an exacerbation of another disease, and that is a completely different story!”—Professional 1 |
4.5 Support line feasibility “Yes, I would use the line and try for the person [answering my call], in addition to the psychological support, to be my mentor (…).”—Patient 1 “For me the line makes sense like this [empathic listening and coping mechanisms] (…). I think that this line is not to solve problems, that is not the goal here.”—Professional 2 “I often hear the nurses complaining that we have patients who call there constantly, I do not say daily, but they do call two or three times a week.”—Professional 2 |
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Cruz, M.; Durães, M.I.; Azevedo, P.; Carvalhal, C.; Pinho, S.; Sampaio, R. Perspectives on Creating a Chronic Pain Support Line in Portugal: Results of a Focus Group Study among Patients and Healthcare Professionals. J. Clin. Med. 2024, 13, 5207. https://doi.org/10.3390/jcm13175207
Cruz M, Durães MI, Azevedo P, Carvalhal C, Pinho S, Sampaio R. Perspectives on Creating a Chronic Pain Support Line in Portugal: Results of a Focus Group Study among Patients and Healthcare Professionals. Journal of Clinical Medicine. 2024; 13(17):5207. https://doi.org/10.3390/jcm13175207
Chicago/Turabian StyleCruz, Mariana, Maria Inês Durães, Patrícia Azevedo, Célia Carvalhal, Simão Pinho, and Rute Sampaio. 2024. "Perspectives on Creating a Chronic Pain Support Line in Portugal: Results of a Focus Group Study among Patients and Healthcare Professionals" Journal of Clinical Medicine 13, no. 17: 5207. https://doi.org/10.3390/jcm13175207