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- Int J Environ Res Public Health
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Int J Environ Res Public Health.2020 sep; 17 (17): 6425.
Published 2020 3 September. doi:10.3390/Affairs 17176425
PMCID:PMC7503231
PMID:32899328
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Abstract
(1) Background: Ehlers - Danlos -Syndrome is a heterogeneous group of connective tissue disorders that cause pain, fatigue and disability;Bonding tissue's vulnerability.This research is intended to investigate their perception and experiences of the fycological and social areas.One for an interview.The interview guide contained questions to identify the influence of the syndrome on social and psychological life in patients, all interviews were audio absorbed, full transcription and analyzed using the phenomenological theoretical framework.Perspectives and approaches.(3) Results: 31 people were proposed to participate in this study. (2) The need to mention the problem: the diagnosis; (3) restructuring leisure and social circ*mstances; (4) restrictions as a result of financialconditions; (5) the psychological effect of the disease situation;Approach.
Keyword:Ehlers - Danlos syndrome, qualitative study, life experiences, psychosocial approach, chronic pain
1. Introduction
EHLERS - Danlos Syndrome (EDS) is a hereditary disorder of connective tissue with a spread of 1: 5000 and 1: 20,000 around the world that occurs more often in women representing 90% of all cases [[1,,2].
Although the symptoms occur in childhood, they become more serious in adulthood.3,,4].1] Comparable to symptoms present with other connective tissue disorders, making the specific diagnosis difficult [5].6]. The Fatigue has also been identified as one of the most debilitating symptoms of EDs [7], and it is very related to sleep disorders, concentration problems, poor social function and pain in pain [8].
In a study conducted in 2018, when 80 patients participating in ED's diagnosis, 67.1% reported a copy of usual pain and 68.8% reported fatigue [9].Is a bit known.Aspects also have an impact on the quality of life of the patient, so it is interesting to investigate how patients with this disease have their daily lives and its influence on their psychosocial life.
Previous studies have shown that the lack of knowledge of EDs among health workers is customary [9].Progress within medical treatment, but also with interventions that help to get better psychosocial factors that can have an impact on their daily lives [10].More research is needed to investigate the psychological and social effect of life with a rare disease to identify potential risk factors, provides information for healthcare professionals, so that patient's quality can be improved [11,,12].
The purpose of this article is to investigate the experiences and feelings of patients with the diagnosis EDs and how this influences their daily lives.Completely.
2. Materials and methods
This research used qualitative methods using the thematic analysis of Clarke and Braun (2006) [10].Checklist of 32 points the help of qualitative studies [11].
A targeted sampling strategy was followed.With the geographical spread we received patients in various public and private centers in the four cities cited earlier..Type II or Hypermobile EDS Type III (N= 25), except a woman, P18, with vascular EDS Type IV diagnosis.Arrange the place and time of the interview.A friendly conversation style and was used so that the fear of the participants was reduced.
2.1.
Participants were invited to talk about questions regarding their illness by asking open questions in one for an interview.The interview guide contained questions to identify the influence of the syndrome on social and psychological life in patients (Table 1).
Table 1
Interviewgids.
| 1.What physical love do you think this disease has in your health? |
| 2.Which psychosocial aspects of your daily life are influenced by the disease? |
| 3.Which aspects/situations/factors help you get better with the disease? |
| 4.What do you think the severity of the disease determines and the influence it has on your daily life? |
The development of these questions was based on literature from the past [6,,12,,13,,14,,15].
All interviews were audio -recorded in Spanish, complete transcription and revised for accuracy.And a woman, so participants of both sex sex felt comfortable, the interviews always performed.Patients.The duration of the interviews was on average 41 minutes (reach 27 to 55) included in this article in English in this article translated by a native English spread and then translated into Spanish to ensure the accuracy of the translation.Eventually identified inconsistencies were resolved by going back to the recorded sound.
2.2.DATA -analyse
One of the authors who have experience with qualitative research, analyzed the transcriptions.10] Was carried out using a qualitative software package NVIVO 1.0 for analysis of data (QSR International, Melbourne, Australia).Tematic analysis emphasizes identifying, analyzing and interpreting patterns of "themes" in qualitative data [16].Experiences that are revealed by patients with EDS from their own perspective.And subtems, text -based stories were intensely and repeatedly anchored;The main goal was to look for patterns and mutual connections.17].
Reflective was maintained during the study by controlling previous assumptions and by controlling reflection notes.In line with their experiences.
2.3.Ethical considerations
Written permission was first obtained from all participants.Hospitals with number 1754 -n -17 and achieved a favorable evaluation.18]. .
3. Results
32 people were proposed to participate in this study.In all five patients, they mainly refused to participate in a lack of accessibility to answer the interview.are detailed inTable 2.
Table 2
Socio -demographic characteristics of the participants.
| Participant | The | Six | Education | Employment opportunities |
|---|---|---|---|---|
| P1 | 42 | He | Primary | Autonomously collects |
| Ba | 46 | Woman | University | engineer |
| Dig up | 38 | Woman | Primary | Caregiver |
| Ray | 18 | He | Subordinate | Student |
| P5 | 49 | Woman | Subordinate | Administrative assistant |
| P6 | 47 | Woman | University | Manager |
| P7 | 37 | Woman | Primary | Barber |
| P8 | 48 | Woman | Subordinate | Boer |
| met | 51 | Woman | Subordinate | Store assistant |
| P10 | 53 | Woman | Subordinate | Administrative assistant |
| P11 | 25 | He | Subordinate | Student |
| B 12 | 54 | Woman | Subordinate | Occupational therapist |
| P13 | 41 | Woman | Subordinate | Administrative assistant |
| P14 | 42 | He | University | Pharmacist |
| P15 | 32 | Woman | Subordinate | Marketing |
| P16 | 57 | Woman | Subordinate | Officially |
| P17 | 56 | Woman | Primary | Fisherman |
| P18 | 26 | Woman | University | Account- |
| B 19 | 46 | Woman | University | Biologist |
| P20 | 33 | Woman | Subordinate | Marketing |
| P21 | 48 | Woman | University | Administrative assistant |
| B | 40 | Woman | University | Docent |
| Splash | 45 | Woman | University | Bank assistant |
| P24 | 24 | He | Subordinate | Student |
| Fraternally | 20 | Woman | Subordinate | Student |
| P26 | 57 | Woman | Subordinate | Nurse |
Verbal testimony is given to illustrate the conclusions.Table 3.
Table 3
Themes and sub -themes.
| Head theme |
|---|
| 1.Pain and its consequences on a daily basis |
| 2.The need to mention the problem: the diagnosis |
| 3.Restructuring of leisure and social circ*mstances |
| Under -makers |
| in.The value of partner support |
| B.The weather influences social plans |
| C.Physical exercise and illness |
| 4.Restrictions due to financial affairs |
| 5.Psychological impact of the disease situation |
| Under -makers |
| in.Support groups |
| 6.Professional limitations |
The main themes identified from the analyzes were (1) pain and its consequences on a daily basis, (2) the need to name the problem: the diagnosis, (3) restructuring of leisure and social disorders, (4) limitations as a result of economic conditions, (5) psychological effect of the disease situation and (6) professional limitations.Share sub -themes that emerged from each theme are described for each theme.
3.1.Pain and its consequences on a daily basis
One of the most common and frequent manifestations is pain.Many interviewees state that they have learned to live with chronic pain and it is no problem for them.
"... in the end you get used to pain ...".
See AlsoHypermobilt Ehlers-Danlos syndromeHypermobile Ehlers-Danlos syndrome and hypermobility spectrum disordersHypermobility: what is it, what causes it and how is it treated? | Top doctorsEhlers-Danlos syndromes and hypermobility spectrum disorders(P1)
However, what is most limited to them is fatigue and exhaustion resulting from the lack of rest at night and becoming a limitation for the implementation of daily routines.
"Because I don't sleep and I don't rest well, I don't have reassuring sleep ... Tiredness is worse than pain."
(Ba)
"... what limits me the most is fatigue, physical fatigue. Fordi you are ... you get tired."
(BAA)
"Fatigue is much worse than pain, fatigue conditions many things".
(P8)
3.2.He must call the problem: the diagnosis
Patients tell their journey until they are finally diagnosed.In some cases they spend many years until a diagnostic label all symptomatology is assigned that they express.Reviewed by health workers and their own family and friends.
"You go a long way until you get a diagnosis."
(P1)
“The diagnosis of things is something you are waiting for with your arms far because people see you as a hypochondriac ... and you feel bad because nobody believes you, except pain, there is physical exhaustion that I personally hear it badlyDealing with and has nothing energy ”.
(P10)
"Great, I have something, I'm not crazy!".
(P13)
However, patients spend the need to feel what happens to them to deal more effectively with the development of the disease.
"They often ask you" Why do you want to put a label on it? "Yes, you have to place a label and know what you stand for, how you can prevent this and how you can improve."
(Ba)
"... It is not encouraging or positive, it is really a necessary part, so you can take the time you need to accept that this thing will be with you forever. And from there you can handle your lifeAdjusting that fact. It is not the most important thing for me, but it is really necessary (refers to the diagnosis).
(B)
On the other hand, some patients give a change in the attitude of health workers when the diagnosis is made.From that moment they feel less appreciated and more supported in the process.
"Going to a doctor and not being seen as a weird and not seeing the doctor's face" my dearest, what a pain in the neck "doesn't feel that you think you're a hypochondriac, or that you are assuming to get something.If it is not true that you are protected and that they help you ”.
(P10)
3.3.Oor metructure of leisure and social circ*mstances
In general, people who suffer from ED's relate to ED's how to tackle social image that people around them have who, although they have a normal look, have many limitations in the implementation of their daily routines.People who cannot complete a project if they are actually too exhausted to do this.
"... people around you don't understand you completely, you see? They see that you are doing well, you are happy, you work for many hours, whatever happens, but of course they do not understand that when you reach home, you're out of condition ... ".
(P1)
"... and they think I'm at home because I want to be. No, it's because I can't walk on the street because I want to fall or because it hurts me so much that I choose not to go".
(P6)
“... there are people who understand you and good, they give you some support and there are people who don't do it, they don't understand because hello I am a normal person on the surface, I don't mean villages at first sightThat I have a chronic disease, but of course I can't prove it. "
(P7)
"Usually there is nowhere to sit on the train (...). And because people see that you are doing well, it clearly gives you that nobody gives you a chair."
(P13)
It is possible to see social insulating behavior in some patients, because they are unable to follow the pace of some groups, and to make social plans with short areas because they cannot know how they will feel.
"... it's true that you are starting to lock yourself up more and more, you see people less, you will find more obstacles for everything ...".
(Ba)
“It influences me more in the social aspect, and if I have to be in a bar, have to sit on a chair, with back pain or whatever, and loud music, and at night, don't look good, forcing my eyes....
(P5)
"There are people who don't call me who no longer count me."
(P6)
"... Social life deteriorates enormously because a group is very dynamic and the group keeps moving well, there are times when you have limitations and not everyone understands."
(B)
To do this, some of them have the strategy to rest more on the previous and following days, so that they can make these social plans.
"If I want to go out, I have to rest more, I have to go with a process ... I am going to program more."
(P8)
All this adds the difficulties to the social circ*mstances of patients, to the point that they have to justify themselves for the others, because they do not always feel understood in their actions and behavior.
"... I say" I'm in a hurry, I'm very busy ". It's not true that I have a lot of things to do what happens is that I take so much time in every little thing I do, it isSo hard for me that in the end I don't have time anymore ”.
(Ba)
"So you can go out for some beer t is the same attempt to lift the glass as the spring dust, it's not the same, right?"
(P13)
"I'm not going out. Because I can't get up for too long and certainly that I can't have long walks because I always have to stop. I just can't, my knees are weak, they hurt."
(P17)
3.3.1.
It is fundamental that the patient's partner understands the disease so that they are aware of certain situations that can happen.
'So your social life is quite complicated and the same with a relationship.I had a girlfriend and he always pushed me and I had bruises over me and he always said "" It's like breaking, isn't it, not really lazy or ... ".
(P5)
"Sometimes they sometimes understand you alone, and sometimes they refer to (refers to the partner)."
(P14)
"It has an impact on the relationship, because the most important thing is that your partner has to know what you are going through and that they have to learn to accept things and every person has a different rate when it comes to accepting things."
(B)
Especially in the case of women, problems with the sexual atmosphere have been identified.Often their partners do not believe that they really have a health problem;Instead, they think they complain a lot.
"... it's hard that someone understands you for what he thinks you are apologizing. It is very complicated. At any time you are in pain, you are looking for a different position you are changing, but the fact that is exhaustedAnd thinks "my God, how lazy, now this and that and whew" ... it's huge. "
(P10)
"I mean, although he doesn't say so, I think I got the diagnosis, he thinks there is a reason. If he thought it was due to ... osteoarthritis because of work ... anyway? And yes,I think he's more now ... more positive, you know?
(P17)
3.3.2.
Atmospheric changes have an impact on the physical conditions of people with EDS.Moisture changes seem to have a negative effect and when this happens, patients feel obliged to change their social plans.
"If there is good weather, I can do more things, I think it is easier to do them, but in fact I always have limitations."
(P1)
"It's true that when it's colder, I have more contract hours and more pain."
N4
"Any contrast in the temperature has a lot of influence on me. Would it rain? Don't trust me for the next three days."
(Se)
3.3.3.
There are patients who have a very active lifespan for the diagnosis;Some of those who even compete professionally, but over the years and with the development of the disease of the disease, physical training became more difficult and more difficult.of the difficulty to implement it.
"... Because I went every day, but I had to give up because of physical problems. My hip hurt me a lot."
(Ba)
"Before the most difficult part of this I made Potholing, I had been in a federation for 16 years, I worked like a screen, I die, rafts, climb ice ...".
(P21)
Some of them continue to perform physical training, and the activities they tolerate are going to go, swimming, yoga and pilates.
"And doing gymnastics helped me because it relieved my back pain. Pilates were good for me, soft gymnastics, stretching exercises ...".
(P5)
3.4.Restrictions due to financial affairs
Differences can be observed in the way people deal with the disease, depending on their purchasing power and financial disorders.So there is inequality.
"Medicine is quite expensive ... I can't even consider registering because I can't afford the swimming pool and yoga".
(BAA)
“What I do is going, walking, I went to a gym, but I had to give up because I can't afford it (...) I would really like to go to physiotherapy, especially because of back pain, I really wanted some massage treatmentsGetting my legs, reflex treatment, everything, everything that can heal my pain.
(B12)
3.5.Psychological impact of the disease situation
People who suffer from ED's confirm the negative influence that the disease has on their psychological tickets and balance, and still do not feel the psychological or emotional support that would help them deal with the effects of the disease.
"We are depressed because we are in pain, not the other way around ... Chronic fatigue is not about resting, you are already getting tired."
(P6)
"The truth is, it's difficult. It is difficult because it is a lot, psychologically influencing, just thinking that ... you feel useless, completely useless, unbelieving, it's a constant fight between what your head will do, what youSpirit you ask and what your body enables you to make it and it is impossible and you cannot check ... This is very difficult to deal with, psychologically.
(P10)
"And certainly that it influences me psychologically because I want to do a lot of things, such as walking, and I can't do it. I can't go excursion, just like that; the next day I would be able to get his bed for 2 days without being able to get up".
(B12)
Supportgrupper (Subthema)
Support groups, patient associations, etc. initially offer positively appreciated support, because they help patients to be aware that they are not alone and that there are more people who share the same problems.
"In the beginning, you ... you feel the need to see and know people as you. It is a great help to talk about these things with people like you."
(Ba)
"It brings more comfort, because then you see that it doesn't happen to you alone or that you see that you don't overdo it that there are others who experience it in the same way as you."
(BAA)
After a while, however, they don't find much more benefit and the participants communicate that they would rather not share these spaces with other people.
"There are times when you are tired of always doing the same thing, and you can also feel a bit weakened."
(Ba)
"All these questions hear that other people have given me so much fear that I can't even talk about it."
(B12)
"There are people who experience this association as something positive, and there are others who say so, yes, it is more a burden for them."
(P14)
3.6.Professional limitations
Patients tell their stories about how their illness more and more limited them in the professional aspect, so that they sometimes register work leave for different seasons during their professional life.'Lack of understanding of the peculiarities of the symptomatology of the disease.No less, when a change in work is possible, adapted to the skills of each person, they feel satisfaction about their performance at work.
"And yes, I had to change my job because I could not tolerate it (...) On the one hand, the syndrome would not allow you to do the work, but on the other hand they will not tell you that your Harnoget Handicap”.
(P1)
"Terrible, I mean, in the professional aspect, very bad. The moment they know that you have some disease or when you let browse more often, we all know what is coming ..." (referring to work with redundancy).
(P7)
In other cases, patients had to adjust their professional lives to the limitations caused by the disease, reducing the number of hours or the type of work they did.
“Fortunately I was in a very flexible company so far, so I could decide not to go for a few days or to compensate for these hours for another day;I prefer ".
(P18)
"And at a level of work it was a bit relieved, because sometimes you are not the way you had to ask for a disability, but you are not at your 100%, and it is a shame because I would like to work."
(P20)
4. Discussion
The aim of this research was to get more information about the effect of Ehlerers - Danlos Syndrome in the psychosocial life of the diagnosed.Identified themes suggest.This information acts as if the lack of knowledge in health care covers this rare disease referred by patients, by discussing, giving and sharing experiences and their consequences in daily life.
Only two recent studies with regard to this area have been published [19,,20].Disse authors have carried out an evaluation through a qualitative study based on patient interviews.21,,22].
Such as Bennett et al. (2019) [19] Reported, patients who suffer from EDS said a general lack of awareness of this condition among care providers, but also to the public [23].Support, but to strengthen and treat patients as a whole.
Some studies suggests that the biggest problems caused by EDS chronic pain and fatigue when our interviewees referred [1,,12,,24,,25].Disse symptoms have a major impact on daily activities, up to 87% patients who feel pain, according to Voermans et al. (2010) [7], and this contributes that patients do not feel the energy of carrying out activities on a normal day., negative thinking, hopelessness or despair [26].19,,20,,27) People often have to give up activities and determine limitations for family and friends because of their fear of pain or dislocations of joints, fear of falling because of their reduced balance or fear of movement that contributes to their insulation13,,19,,20,,25,,28,,29,,30].27].
A published systematic review discovered the absence of guidelines for good clinical practice to optimize EDS patient care;In fact, many patients remain without a good diagnosis [19,,20].Many of them have symptoms and do not meet the criteria currently being diagnosed, and this lack of medical knowledge contributes to the patient's burden and a delay in the diagnosis and treatment.Baeza-Velasco et al. [[[9] On average, discovered a diagnostic delay of 22 years in the participants in their studies.27] discovered that our study has shown that people with a diagnosis have this as a need to get social credibility.However, this diagnosis is often defined as a very frustrating, challenging and slow process [19,,20,,27].If they sometimes have no perceptible physical signs, people with Ehlerers - Danlos syndrome do not understand the understanding of care providers.6] indicated that the need to seek diagnostic confirmation with multiple doctors, who concerned the difficulty that these patients were confronted with when trying to gain access to the right treatment.Know the consequences of this disease and patients feel invisible and often struggle to find a professional that they can discuss what they feel [14].These are the reasons why it is important to spread knowledge of EDs to minimize these health consequences, a challenge for nurses who take care of and support these patients.
The results of employment in our study are in line with previous studies that have proven that the limitations for people with EDs reduce the career opportunities and determine what kind of activities they can do or not at work.Berglund & Nordström (2001) [31] Noted that EDS patients had a poorer self-compassified functional health status than patients with fibromyalgia and rheumatoid arthritis, even in work-related dimensions.32];Others must reduce their working hours or turn their professional activities into a different, better adapted to their skills27,,33].Support groups and patient groups have been shown to help reduce anxiety and anxiety with regard to symptoms [34].and patterns in life (cognitive behavioral treatments) has been shown that it is effective [35] and useful to improve the ability of the patient to deal with experiences with chronic pain [36].
Our findings confirm proof of how the social life of the patient had an impact on activities or ways to relate.19] Described restrictions in daily activities as a result of factors such as frequent dislocations, limited mobility and symptoms of fatigue and pain.37] As we discovered in our research, the participants referred that fatigue after a restless night was the most important reason to refuse plans.38] Noted that patients with hypermobility type Ed's showed small muscle strength and this was associated with activity restrictions.their social life.They didn't do what they liked, but what they could do in this way.
Training and physiotherapy is an important part of patient management for some authors [33], offers functional positive effects [29,,30] and even helps to improve their mental health [39].On the other hand, a systematic review by Palmer et al.40] concluded that a clear causal effect between training and improving symptoms in patients with EDS type hypermobile and common hypermobility syndrome has not been demonstrated.And those who cannot contribute to inequality under social -economic criteria.41].In this way, patients can better adapt to their illness.
Smith en.42] found a quadrupled increased risk of anxiety and depression in EDS patients.Berglund et al. (2015) [(2015) [14] Noted that 74.8% of the participants reported with EDS on high anxiety results, and probable depression was assessed by 22.4% of them.Albayrak et al.43] Reported a clearly increased level of depression to the participants in their studies with EDS.The psychological involvement is identified by our interviewees who refer psychological symptoms related to chronic pain and fatigue.Emotions [12].
Female participants in this study showed problems to fully enjoy their sexual life.In some cases they did not feel understood by their partners.Pelvic problems are related to multiple dysfunctions in EDS patients [44], such as pelvis, rectal or genitals;19] Also reported difficulties with sex and intimate relationships.Dispring problems seemed to come from questions about fatigue and pain that we have found, and other writers said [32].
Limitations: Moreover, all participants were members of a patient association, so their experiences or perceptions of their illness may have changed over time or far from them without such social support.assessed.quality.
Further studies are needed based on quantitative and qualitative approach.
On the other hand, how these symptoms can be controlled by patients and how they can influence their emotional and social health should be investigated.
The results of this article are useful for designing interventions that support patients in their psychosocial, disease -related problems.Quality of life and dealing with the disease in addition to medical treatment.
5. Conclusions
This study suggests that EDS influences daily life, not only at a physical level, but also in a psychological and social sense.Social and well -known support is important for patients to meet the syndrome.Social life because of the disease, so that they can have a better quality of life.Professional options have been reduced by the development of symptoms and financial limitations can reduce their self -care..
Acknowledgment
The authors work in the Podiastic Hospital in Barcelona (especially Enric Giral and Balrinri Prats) and Beinguman Clinic (in particular Lafuente) to wear Studs Student students.
Author contribution
Conceptualisatie, P.V.M.-M., M.R.-B.en I.C.P.-T.; Methodology, F.L.-L.An en G.D.-M.; Formula Analysis, F.L.-L.An en M.D.C.V.-B.; Study, G.D.-M. en I.C.P.-T.; Resources, P.V.M.-M. Dataury, F.L.-L.And M.R.-B.; Schrijfvoorbereiding Preparation, F.L.-L., M.R.-B., P.V.M.-M.en I.C.P.-T.;en P.V.M.-M.; Visualization, M.R.-B. en M.D.C.V.-B.; Monitoring, P.V.M.-M.;
Finance
This research was bound by "We have the plan for research and transfer - 2018" of the University of Sevilla.
Conflict
The authors do not explain an interest conflict.
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