https://periodicos.ufpel.edu.br/ojs2/index.php/enfermagem/article/view/16980
ORIGINAL ARTICLE
Perspectives of home oxygen therapy for patients with chronic lung disease
Perspectivas da oxigenoterapia domiciliar para pacientes com doença pulmonar crônica
Perspectivas de la oxigenoterapia domiciliaria para pacientes con enfermedad pulmonar crónica
Bueno, Giovanna Hass[1]; Weber, Aldair[2]; Godoy, Ilda de[3]
ABSTRACT
Descriptors: Oxygen inhalation therapy; Quality of life; Perception; Pulmonary disease, chronic obstructive.
RESUMO
Objetivo: conhecer as perspectivas dos pacientes com Doença Pulmonar Obstrutiva Crônica sobre o uso da Oxigenoterapia Domiciliar Prolongada. Métodos: estudo qualitativo, com 20 pacientes com diagnóstico de Doença Pulmonar Obstrutiva Crônica, durante o primeiro trimestre de 2014, atendidos no Ambulatório de Oxigenoterapia em São Paulo. Foram utilizadas entrevistas semiestruturadas e Análise do Conteúdo. Resultados: a idade média foi de 69 anos, 70% do sexo feminino, 85% possuía escolaridade inferior ao ensino médio e 15% eram analfabetos. O tempo de uso médio de oxigenoterapia foi 3,3 ±2 anos. As categorias de análise foram: fortalezas da terapia, desafios da terapia, processo de luto e relação com a família. Conclusão: os pacientes experimentaram limitações em suas atividades diárias, sendo estas um ônus para eles. Conhecer as expectativas e experiências destas vivências auxiliam no cuidado mais humanizado e integral.
Descritores: Oxigenoterapia, Qualidade de vida; Percepção; Doença Pulmonar Obstrutiva Crônica.
RESUMEN
Objetivo: conocer las perspectivas de los pacientes con enfermedad pulmonar obstructiva crónica sobre el uso de la terapia extendida de oxígeno en el hogar. Métodos: estudio cualitativo, con 20 pacientes diagnosticados con Enfermedad Pulmonar Obstructiva Crónica, durante el primer trimestre de 2014, atendidos en la Clínica Ambulatoria de Terapia de Oxígeno en São Paulo. Se utilizaron entrevistas semiestructuradas y análisis de contenido. Resultados: la edad promedio fue de 69 años, 70% mujeres, 85% tenían educación inferior a la secundaria y 15% eran analfabetas. El tiempo de uso promedio de la oxigenoterapia fue de 3.3 ± 2 años. Como categorías de análisis fueron: fortalecimiento de la terapia, desafíos de la terapia, proceso de auto-relación y relación con la familia. Conclusión: los pacientes experimentaron limitaciones en las actividades diarias, que son una carga para ellos. El conocimiento de las expectativas y estas experiencias ayudan en una atención más humanizada y integral.
Descriptores: Terapia por inhalación de oxígeno; Calidad de vida; Percepción; Enfermedad pulmonar obstructiva crónica.
INTRODUCTION
Chronic Obstructive Pulmonary Disease (COPD) is an important global public health issue; its main symptom is a limitation of air flow, usually progressive, and not completely reversible.1 Many people have this condition for years and die prematurely due to the disease itself or some of its consequences.2-3
The World health Organization (WHO) estimates there are 210 million people with COPD all over the globe, with mortality rate above 3 million, being thus ranked third on populational cause of death, after cardiac and oncologic diseases. An increase of 30% for this disease is expected in the next decade.2,4-5
Tobacco is its most important risk factor, being responsible for 80-90% morbidity.4 Total percentage of smokers with 18 years of age or higher in Brazil is 10.4%, with 12.8% men and 8.3% women.6
According to the Global Initiative for Chronic Obstructive Lung Disease (GOLD), COPD has four stages. Patients with level four (VEF1 <30% prediction), are prescribed with Long-term Home Oxygen Therapy (HOT).1 Oxygen therapy is a treatment where partial oxygen pressure on arterial blood is increased by means of a higher oxygen concentration in the air inhaled, and it is an effective therapy. It is prescribed based on gasometrical and clinical data.7
According to GOLD directives, using HOT for periods over 15 hours every day aims at increasing pulmonary hemodynamics, improving physical exercises, reducing polycythemia, helping lung mechanics and overall mental state of the patient.1
However, in spite of the benefits
provided by HOT, such as improvement of clinical conditions and social
life,8 users also acknowledge there are disadvantages in using it.
They identify mobility issues, and discomfort when using nasal catheters, as well
as the noise the device makes.9 Others complain about physical
barriers, psycho-social barriers and emotional challenges, specially social
prejudices towards using the device.10 Such disadvantages make it
hard for users to adhere to HOT, and limit user perception on clinical benefits
of the treatment, being thus a possible risk factor for frequent COPD
exacerbations, which frequently result in hospital admissions and an increase
in healthcare cost.11
Given the clinical importance of HOT and how difficult it is for patients to adhere to treatment, this study aims at getting to know the perspectives of patients with Chronic Obstructive Pulmonary Disease on the use of Prolonged Home Oxygen Therapy.
MATERIALS AND METHODS
This is a qualitative study, developed with 20 patients diagnosed with COPD and using HOT, who were admitted at the Oxygen Therapy First Aid Station at Hospital das Clínicas de Botucatu, of the Medicina de Botucatu College (HC-FMB), in the countryside of São Paulo state, Brazil.
Inclusion criteria for the study were: patients who were diagnosed with COPD and who have used HOT for over a year, who were admitted at the Oxygen Therapy first Aid Station at HC-FMB, and residing in the city of Botucatu, in the state of São Paulo. Exclusion criteria were: patients who presented mental confusion or were unable to express themselves verbally.
Patients were interviewed once, at the HC-FMB Oxygen Therapy First Aid Station, on Mondays and Thursdays in the morning, in a reserved space, which guaranteed total privacy for interviewer and interviewee; interviews were not interrupted. Interviews were recorded, and conversations were transcribed by the researcher. To grant patient anonymity, they were labeled using letters (A to T).
Data were collected during the second term of 2016, with random sample of patients included, and using a semi-structured interview that was built for the study. Some of the questions on the interview are as follows: “What does using oxygen means to you?”, “how has your life changed once you started using HOT?”, “How has life changed for people at your home after you started using HOT?” and “Do have any leisure activity?”. From these triggering questions, interviews were conducted, favoring the principle of free association of ideas.
Sample closure occurred using the concept of theoretical saturation, where repetitive, redundant content is perceived by the researcher; when it happens, materials obtained have "saturated" the research question, and no more partakes are needed.12
After collection, data was analyzed based on theory, namely a content analysis that uses Bardin's perspective,13 that is, a construct that uses several communication techniques with the goal of systematically organize and objectively describe content obtained in collected material or in messages that are sent. The content analysis method is comprised of three stages: pre-analysis, analytic description and inferential interpretation.13
Pre-analysis is the stage of organizing material and systematizing the first ideas into an analysis plan. At this stage, interviews were transcribed in full and texts were read in flow, exhaustively.13
Next, for the purpose of analytic description, registry units were chosen and codified, as they converged towards the phenomenon. Then, thematic units were chosen under a generic title, based on a group of elements, in a process called ranking. Ranking is a simplification of raw data into organized data.13
Lastly, for inferential interpretation, data were unveiled in order to become significant and valid, so that patients' perception towards HOT could be understood.
This work was approved by the Research Ethics Committee of the Faculdade de Medicina of Botucatu/São Paulo State University - Decision #607.216, and the Presentation Certificate for Ethical Appraisal #40762114.0.0000.5411. For this research, best practices were followed according to Resolution #466/2012, adhering to ethical principles and guaranteeing absolute secrecy and anonymity of individual information regarding participants.
RESULTS
Sampling comprised of 20 patients under 69 years of age, with 70% female, 15% illiterate and 85% with unfinished intermediary school. Among the patients studied, 19 had quit smoking. The HOT system used by all patients was an oxygen concentrator followed by a backup cylinder. Average HOT use time was 3.5 +1.9 years, and daily HOT use time was 16.8 ±3.7 hours.
Perception of HOT usage attributed by the patients was classified into four thematic categories, described as follows:
Therapy fortitudes
Users reported clinical improvement from dyspnea and tiredness, easing their daily activities and improving their functional capacity, as one can see in the following statements:
I feel so happy to even mop the floor, I see I'm really getting better. (E)
I got really better from lack of breath, from tiredness. So, I can use it and do more things, right? Because it allows me to get down, get up, without feeling unable to breathe, right? (I)
Before starting using oxygen I'd live in the hospital during the nights, unable to breathe, feeling like I was going to die. Now I got better, oh my! (T)
Therapy challenges
There are many implications for patients in using HOT, such as worse sleeping patterns, nostril injuries, difficult mobility, and increase in electricity bill.
I paid R$ 205,00 this month. It's a lot more, right? (H)
It's not so good at night. The noise is irritating. (K)
It hurts my nose quite a lot, it bleeds sometimes. (P)
it's annoying, gets wrapped on my feet, it's a long rubber straw that always gets in my way. (T)
They also verbalize on the social implications, especially towards isolation and the loss of independence in daily life activities.
My life got limited. For instance, I can't do anything, traveling, that sort of thing, right? Because you have to carry the device. You'll put it in the bus (sighs), it's hard "[...]" It's hard "[...]" So what can we do, we don't travel, right? (C)
We have no more freedom to go out, everything you're going to do you have to put on the oxygen. I tell them that, "I won't go, you can go on your own". (G)
I stopped going to church because, you know, people are prejudiced. They look at you with that eye of someone who says “what are you doing here?”, so I stopped going, I'm going back now because I can't stay without it. (Q)
The grieving process
Grieving shows up as a dynamic and painful process of representation change, where the subject abandons previous schemes and learn different ones, thus adapting to a new reality, as one can see in the following excerpt:
At first, I got nervous, but now I'm used to it. I'm not ashamed anymore. I use to be ashamed to use the oxygen, and I'm not anymore. People ask and I answer. At first, they came and asked, and I was unable to answer, I started crying. Now, it's all good. (D)
I try not to think about the worse part, I think for the best. Because at first it was tough, psychiatrist, psychologist!! Sometimes I fall back on, but then I look back and see how much I have improved, and it cheers me up [...] I won't say I'm like the way I used to be. (E)
Grieving also appears in speeches along with deep suffering. Sadness, desolation, guilt, and fear are very common emotions.
Because I'm always thinking. Always afraid of feeling ill. (H)
I keep thinking "My God, what have I done to myself by smoking... because I ruined my life... it changed so much [tears]. (M)
Family relations
According to patient reports, there have been negative changes in family relations and activities, specially towards spouses and children. These changes can be seen in the next statements:
She's also limited, my poor wife, she got into the same condition I have. If I don't go, then she won't go either; she thinks it's not suitable, so she doesn't go. (C)
The first one to change was my husband. He couldn't handle it and left me. (Q)
When my daughters got into my bedroom, the first time I was using the oxygen, they started crying, they got really nervous. (P)
DISCUSSION
Patient perception on using HOT represents and tells how they relate to their own lives, to their families, society, and therapy. Benefits reported by patients in this study are related to clinical improvement, making it possible to accomplish basic daily activities, and life maintenance activities as well, which is the purpose of HOT itself, that is, reducing tissue hypoxemia during daily activities, thus improving quality of life and enhancing survival, by improving physiological variables and clinical symptoms.1
HOT usage is presented as a tool for enhancing functional capacity in patients. These benefits included improved social interactions, appreciation of health conditions and everyday activities. Most patients also perceived benefits in symptom control, such as improvement from lack of breath, nausea, appetite and skin tone. Main disadvantages, as identified in these studies, were decrease in mobility, discomfort when using nasal tube, impediments towards accessing oxygen therapy, and noise from the device.9
The influence of an oxygen supply system in Health-Related Quality of Life (HRQL) in patients with chronic hypoxemia has shown that HRQL can be improved with regular use of HOT, and that such improvement on HRQL is influenced by the oxygen supply system.14 This finding is corroborated by research carried out in Manchester, England, which points the positive effects of HOT on users' everyday life, based on how flexible the treatment becomes when using portable oxygen. Patients felt more capable of managing their lives in the context of physical implications of COPD and HOT, thus improving their quality of life.8
However, HOT treatment may also present side effects, such as nasal discomfort, leading to dryness and nose bleeding, dizziness, lack of taste and smell.11 Another consequences identified are an increase in power consumption and spending, a decrease in mobility, and the device noise.9,14 All these implications were reported by the patients interviewed, who complemented by pointing out the social consequences in using HOT, especially when it comes to isolation and the loss of independence in daily life activities.
Negative aspects were also recalled, such as concerns on HOT dependence and a decrease in health,9 which differs from findings in the present study.
In Brazil, a study carried out at São Paulo Hospital, which belongs to the Universidade Federal de São Paulo, verified that patients using HOT lose some level of independence in daily activities, due limitation of air flow and restriction of movements that is imposed by using oxygen — all of them factors that interfere in quality of life.15
These restrictions in users' everyday lives lead patients to not adhere to treatment, thus decreasing efficacy and benefits of HOT.10
From the moment when HOT is prescribed, the disease comes up as a sign of awareness on the existence of a body, which is not perceptible as long as one is healthy. When the body is changed, it is thus realized, and becomes a matter of concern.16
Thus grieving comes to the fore — a natural reaction, and an expected one, when bindings are broken, not only towards death, but also towards other situations of irreversible deprivation.17 Grieving is a consequence of experiencing loss, which takes place every time life is affected by the ending of a relationship, or a project.18 It means emotional and intense suffering that is caused by loss, a deep sadness, a dynamic process, individualized and multidimensional, which an individual who lost something goes through.17 One can see that the patients who took part on this research presented a process of grieving from the point of reorganizing their lives after they were diagnosed with COPD and had to use oxygen therapy continually; that is, subjective organization and constitution of the people who were transformed when facing challenges and issues, and the feeling of guilt impinged on themselves on individual factors that peaked when they found out they suffered from a chronic disease.
Studies were carried out that aimed at understanding how patients deal with chronic diseases or with how an injured body is represented.16-18 Their results show that the chronic injured body produces a feeling of loss of control over oneself, turning the body into something that cannot be manipulated at will, and is thus insufficient to represent personal identity.16 They also show how patients act in order to live and feel alive, both concretely and symbolically, in spite of the intense pain that is felt from the disease.18 They also make it clear that this is a continuous and nonstopping movement, of seeking, since strategies are not always successful; it also explain that their response can be more or less intense, depending on their internal willingness to find and surpass the countless challenges and consequences of living with their condition.18
However, it is not only users who need to adapt and change their everyday lives; their families, as a consequence, follow the same path. According to patients' reports, there have been changes in family relations, especially towards spouses and children. The closer ones end up becoming informal caretakers.
Such challenges show that it is necessary to evaluate the family members' quality of life (as informal caretakers), as well as the impacting factors, in order to promote integrating actions in healthcare, minimizing the effects from overload (which can often compromise assistance to patients and cause caretakers to become sick).15
It is important to get to know how family relations are changed, because it shows how therapy can impact a patient's family, how much it mobilizes them, and how stressful it is. It is fundamental that a healthcare staff be aware of such changes, in order to minimize nuisances and best adapt HOT without disrupting a family.
This study did not present hindrances, since logs are electronic, and students can access them easily; patients cooperated willingly, since they were at a school-hospital, and researches are frequent there. Interviews were made at home and were scheduled, so the researcher had no problems with refusals or not finding people.
FINAL REMARKS
Changes in users' everyday life and behavior are striking, once HOT is prescribed. Patients experienced limitations in daily activities that were perceived as a burden. Getting to know how patients perceive therapy is extremely important to help teams conduct treatment more adequately and provide a more humanized assistance, with planning and implementing activities that are compatible with patients' needs, respecting their individuality and wholeness, thus preventing grievances to health.
The results of this study show how necessary it is for teams to know the history of patients who use oxygen at home, in order to help adaptation, face difficulties and improve adherence to therapy.
The study had limitations, such as problems in interviewing subjects, for a lack of clinic rooms or matters of patients' transport timetable.
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ACKNOWLEDGEMENTS
We thank CNPq/PIBIC for believing in, and financing, this work.
Submission date: 24/08/2019
Acceptance date: 06/03/2020
Publication date: 25/03/2020
*Translated by: Daniel Soares Duarte. Adjunct Professor of Bachelor of Arts in English-Portuguese Translation at Universidade Federal de Pelotas (UFPEL).
[1] Nurse. Master in Public Health. Universidade Estadual de Campinas (UNICAMP). São Paulo (SP), Brazil. E-mail: giovannahassbueno@gmail.com http://orcid.org/0000-0002-2824-3085
[2] Nurse. Master of Science. Universidade Estadual de Campinas (UNICAMP). São Paulo (SP), Brazil. E-mail: aldairweberr@gmail.com http://orcid.org/0000-0001-5258-5635
[3] Nurse. PhD in Tropical Diseases. Universidade Estadual Paulista Júlio de Mesquita Filho (UNESP). São Paulo (SP), Brazil. E-mail: ildadegodoy@gmail.com http://orcid.org/0000-0002-8974-7332