RESEARCH ARTICLES

Perceptions of clients with HIV/AIDS about the use of an educational guide for eye selfexamination

Jennara Candido do Nascimento^I; Ellen Lucy Vale de Souza^II; Paulo Cesar de Almeida^III; Lorita Marlena Freitag Pagliuca^IV; Joselany Afio Caetano^V

^IPhD in Nursing, Assistant Professor III of the Graduate Nursing Program at the University Center Estácio of Ceara. Brazil. Email: jennaracandido@yahoo.com.br
^IINurse at the Intensive Care Unit, General Hospital of Fortaleza, Fortaleza, Ceará, Brazil, Email: ellenlucy88@hotmail.com
^IIIPhD in Public Health from the University of Sao Paulo, Assistant Professor of the undergraduate course in Nutrition and Nursing and the Graduate Program at the State University of Ceará, Brazil. Email: pc49almeida@gmail.com
^IVPhd in Nursing, Full Professor of the Nursing Undergraduate Course and Nursing Graduate Program at the Federal University of Ceará, Brazil. Email: pagliuca@ufc.br
^VPhD in Nursing, Assistant Professor of the Nursing Undergraduate Course and Nursing Graduate Program at the Federal University of Ceará, Brazil. Email: joselany@ufc.br
^VIArticle extracted from the Thesis Evaluation of an educational technology in the promotion of the ocular health of people with HIV/AIDS, presented in 2010 to the Graduate Program in Nursing, Federal University of Ceara. Brazil.

DOI: http://dx.doi.org/10.12957/reuerj.2014.6109

ABSTRACT: This study aimed at analyzing the perceptions of clients with Human Immunodeficiency Virus (HIV) and with the Acquired Immunodeficiency Syndrome (AIDS) while using an educational guide for eye self-examination. Descriptive and exploratory study with qualitative approach, developed from May to August 2010, in outpatient care of referral hospital in infectious diseases in Fortaleza, CE, Brazil, with 130 people living with HIV/AIDS. Data was collected through semi-structured interviews, and analyzed critically on the basis of selected literature. The educational guide received favorable acceptance, with the illustrations regarded as facilitators for the conduction of eye self-examination. However, technical terms were found difficult and suggestions were made, especially for the inclusion of more images and reduction of statements. The suggestions are helping rephrase the guide, and make it more suitable for everyday use, reducing barriers, and facilitating the performance of steps.

Keywords: Educational technology; health promotion; HIV infections; eye health.

INTRODUCTION

Among the complications of HIV infection, are those that deserve to be highlighted which compromise the visual system VI, which arise unexpectedly and cause blindness¹. About 50 to 75% of people living with HIV and/or with the Acquired Immunodeficiency Syndrome (AIDS) develop some complications in their eyes. The majority is triggered by opportunistic infections and neoplasms, as a direct result of immunosuppression^2,3.

Before a table so complex, the possibility of visual loss partial or complete adversely affecting the lives of these individuals, and, thus, compromises its independence for the self-care and its interaction with the environment around⁴. According to studies, the visually impaired have meaning destructive, being often perceived as a process of finitude^4-6.

Although in the context of care, hospital and outpatient care, these people contains with specialized professionals, health practices favoring approaches related to adherence to antiretroviral therapy and management of comorbidities, an example of tuberculosis. Other areas of interest, such as the ocular health, are still little explored by the dynamics of care.

In this way, the research is justified to the extent that care with the eyes in the context of HIV/AIDS is an important factor in the health/disease process from the conception of integrality, expanding the scope of action of health professionals in addition to actions merely curative. Therefore, this study aimed to analyze the perception of people who live with HIV/AIDS on the use of the guidebook to the eye self-examination.

LITERATURE REVIEW

To analyze the scientific production related to ocular health, were identified experiences inherent in the prevention and control of diseases in the eyes in the school context^6-8. However, it is still a great gap in relation to eye care among people with HIV/AIDS.

Based on some studies, there was a need to identify, understand and seek effective strategies to alleviate eye problems in the context of HIV/AIDS^9,10. For this, we constructed and validated primer for an eye self-examination¹¹. This was formulated to be used by people who live with HIV/AIDS in their daily lives as part of self-care actions. The eye self-examination consists of a series of simple techniques which provide people assess their near / far visual acuity; external structures: eyelids, eyelashes, conjunctiva, sclera, iris and pupil; eye movement; central / peripheral vision. These steps are intended to identify possible changes, such as: reduction of visual acuity.

Given the reports of difficulty for users of healthcare services to obtain an appointment with an ophthalmologist, to highlight weaknesses in care for people living with HIV, in addition to the high cost of ophthalmic examinations, is effective strategy the eye a self-examination, which is characterized as secondary prevention, with reduced cost and safe.

Other studies present results the brochure used by nurses for teaching the users^12-19. In these, it is possible to perceive the intention to work for the empowerment of the subjects involved, favoring the development of skills that help them to modify behaviors, overcome difficulties and doubts.  However, only the studies of Caetano and Pagliuca diverted to the construction of a pamphlet to promote the ocular health of persons seropositive for HIV¹⁰.

METHODOLOGY

This is an exploratory, descriptive study with qualitative data, because of the nature of the object of study and the proposed objective. The research was carried out in reference hospital in the care of infectious diseases, located in Fortaleza, Ceara, Brazil. It is the choice for this field by the fact that the institution be reference in the care of infectious diseases, with special emphasis on HIV/AIDS.

130 people living with HIV/AIDS were selected, all in outpatient care in the institution, in the months of May to August 2010. This number was defined by the criterion of saturation understood as the moment in which the increase of data and information in a search does not alter the understanding of the studied phenomenon²⁰. The participants were selected in the waiting room, during previously scheduled medical visits. As inclusion criteria, the following parameters were considered: to be literate, be duly entered in the above-mentioned service, be 18 years and present physical condition to perform the proposed technique for the eye self-exam. For entry purposes in this study the illiterate, who were waiting for service in the service to treat other infectious diseases, such as hepatitis, and the blind, were not considered. 

For data collection, we worked from Monday to Thursday, individually, through semi-structured interviews, after using the guidebook. The form used appeared in two parts: the first with identification data (age, sex, income, education, marital status), data relating to HIV infection (time of diagnosis and treatment and pharmacological treatment) and the second containing a guiding question, having as its main focus the perceptions of the participants regarding the use of the guidebook to the eye a self-examination.
The insights arising from this question were organized and analyzed by means of qualitative approach of testimonies, aiming at the classification and categorization, and subsequently subjected to critical analysis, in the light of the literature selected, on the basis of the following phases: transcription of reports; codification of reports according to the proposal of analysis, synthesis and interpretation of the results²¹.

First, we read the data in its entirety, for initial seizure of their contents. In continuity, these were grouped by similarity and frequency, being analyzed around the thematic axis: facilities and difficulties in performing a self-examination of the eye.

In compliance with the legislation on the research in human beings²², the research project was submitted to the Committee for Ethics in Research of the institution where the study was developed, which was approved as opinion no. 005/2010. As part of the documentation, the Term Informed Consent Form (ICF) was elaborated, whose participants (P) were informed about the objectives of the research, the procedures, risks, discomforts and benefits. To maintain anonymity, they were denominated as P1, P2, P3 and so on. Also complied with the desire to participate or not.

RESULTS AND DISCUSSION

Participant profiles

The age of the participants ranged between 19 and 56 years; 56 (43.1%) were in the age range of 30 to 39 years; and 40 (30.8%) in the range of 40 to 56 years. Of the 130 respondents, 100 (76.9%) were male, 98 (75.4%) were single and 76 (58.5%) completed high school. With respect to occupation, the majority, 95 (73.1%) worked in activities both formal and informal. Of these, the most frequently mentioned were the duties of professor 9 (7%), merchant 8 (6%), cook 5 (4%), hairdresser 5 (4%) and seamstress 5 (4%). Regarding monthly income, 59 (45.4%) earned up to one minimum wage. It is worth noting that, in some cases, the value reported was even lower.

In reference to the time of diagnosis, 36 (27.7%) had between two and five years for confirmation of the diagnosis, with an average age of 6±5 years. This was also the time most referred to treatment, 51 (39.2%) of the participants. Therefore, indicating that for this group the time of diagnosis and treatment was concomitant.

Facilities and difficulties in an eye self-examination

Over the speeches delivered by the participants, it was the understanding of the benefits from the use of the guidebook to the eye self-examination. As is evident from the material has awakened in them an interest in the theme of ocular health in the context of HIV/AIDS. As noticed, the reports underscored the importance of designs for completion of steps, as explained in the sections below:

The drawings are important for carrying out the steps, because they show how should I do. (P10)

If they didn't have the drawings, I wouldn't have been able to do the steps. (P95)

As evidenced, the drawings were fundamental for a better understanding of the tests, especially in the assessment of visual acuity far and structures external eye. It is called visual acuity the degree to which details and contours of objects are noticed; it is usually defined in terms of the shortest distance by which two lines can be separated and still perceived as two lines23. With the external eye examination can be detected ocular deviations by simple observation, opacities of the cornea or changes in its form and its diameter, among others²⁴. 
A great challenge in the process of teaching eye self-examination consists in the fact that it is not known when compared to the analog self-examination of breasts. Therefore, less used in the context of care for the general population. In turn, the difficulties faced during the implementation of a self-examination eye were basically related to the lack of understanding of some terms that exist in the text, such as sclerotic. According to the participants, the language should be simple and should avoid the use of technical terms.

I think that the language should be simpler, more popular. (P61) 

For the lay person, it is important to place the names: scale of Snellen, grid Amsler grid (...). IT should be replaced by names easy type: graph paper. (P48)

I had difficulty following some steps. (P126)

A written material in language easily understood favors the perception and patient satisfaction, extends the development of their attitudes and skills, makes him the autonomy and the adherence of conducts for the prevention and treatment²⁵.

Also if it was considered as not understanding the fact that the individual does not have recognized the importance of performing self-examination, even in the absence of eye problems, according to the reports, the following:

I could not use it, because it was not of interest to me, because I do not use glasses. (P44)

I didn't do the tests for near and far sightedness because I knew that I had myopia. (P11)

The culture to seek specialized care, only after the installation of physical problems is still quite common among individuals and collectives, compromising the scope of the healthcare actions. However, a number of factors affect the pursuit of specialized care, among these, the financial factor and the ignorance of the population about the importance of frequent assessment, even in the absence of any health problem²⁶.

Thus, the inclusion of educational technologies in health services facing the visual screening of people who live with HIV/AIDS can play a role in the prevention of the onset of severe forms of ocular disease and encourage the development of skills for self-care. It should be emphasized: the history and the eye examination performed by trained personnel, although not experts allow diagnose and treat certain eye conditions, referring to the eye doctor when necessary²⁷.

As proposed, the dialog mediated by an educational technology is a form of humanized care sponsor of emancipation of the subjects^28,29. In this way, increasing emphasis on the concept of management of chronic diseases has been observed in studies, with the provision of clinical support and education. However, if there is to be change in behavior, if requires continuous reinforcement during a certain period of time^30,31.

Therefore, the introduction of primer on and eye self-examination in nursing consultations clinics becomes strengthening of self-care actions performed by people who live with HIV/AIDS. However, this technique should be worked in a continuous manner. Thus, people may promote the evaluations with frequency and appropriately, seeking the services of health, when there are any changes.

CONCLUSION

In this study it was possible to identify the perception of clients with HIV/AIDS about the guidebook to the eye self-examination. It was evident that despite the difficulties encountered, no participant has ceased to perform self-examination the eye with the use of the guidebook. They have promised to run each assessment, on the basis of the guidelines described and, in the end, have expressed their perceptions about the advantages and difficulties experienced.

As a limitation of the study, said the non-application of the guidebook for the eye self-examination among the illiterate people who live with HIV/AIDS. Still, it is necessary to generate other jobs about this theme, involving this specific group, once that also presents a risk for the occurrence of visual impairment. As this technology proposes to promote the health of collectivities, it is necessary to expand its use to any individual.

REFERENCES

1.Platnick J, Crum AV, Soohoo S, Cedeño PA, Johnson MH. The globe: infection, inflammation, and systemic disease. Seminar Ultrasound CT MRI.  2011; 32: 38-50.

2.Moayedi S. Head, neck and ophthalmologic manifestations of HIV in the emergency department. Emerg Med Clin North Am.  2010; 28: 265-71.

3.Gupta AK, Krishna V. Ocular manifesttation of AIDS. In: Gupta AK, Krishna V, editores. Clínical ophthalmology: contemporary perspectives. 9ª ed. India: Elsevier; 2009. p. 401-10.

4.Caetano JA, Pagliuca LMF. Autocuidado e o portador do HIV/AIDS: sistematização da assistência de enfermagem. Rev Latino-Am Enfermagem. 2006; 14: 51-61.

5.Vargas MA, Rodrigues MLV, Figueiredo JFC, Souza NV. Condições oftalmológicas de pacientes com síndrome da imunodeficiência adquirida com longo tempo de seguimento. Arq Bras Oftalmol. 2007; 70: 85-9.

6.Couto Júnior AS, Jardim JL, Oliveira DA, Gobetti TC, Portes AJF, Neurauter R. Alterações oculares em crianças pré-escolares e escolares no município de Duque de Caxias, Rio de Janeiro, Brasil. Rev Bras Oftalmol. 2010; 69: 7-11.

7.Lapa MCS, Freitas AM, Pedroso GC, Furusato MA, Ventura RN. Programa Embu Enxergando Melhor: uma proposta de atenção integral à saúde ocular em pré-escolares. Rev Paul Pediatr. 2008; 26: 113-8.

8.Granzoto JA, Ostermann CSPS, Brum LF, Pereira PG, Granzoto T. Avaliação da acuidade visual em escolares da 1ª série do ensino fundamental. Arq Bras Oftalmol. 2003; 66: 167-71.

9.Caetano JA, Pagliuca LM. Percepção visual alterada em pacientes com HIV/AIDS. Rev Baiana Enferm. 2002; 17: 65-74. 

10.Caetano JA, Pagliuca LMF. Alterações oculares relacionadas com as manifestações clínicas do aids: uma avaliação para a intervenção de enfermagem. Rev enferm UERJ. 2000; 8: 101-7.

11.Zombini EV, Pelicioni MCF. Estratégias para avaliação de um material educativo em saúde ocular. Rev Bras Crescimento Desenvolv Hum. 2011; 21: 51-8.

12.Farias SMC, Teixeira OLC, Moreira W, Oliveira MAF, Pereira MO. Caracterização dos sintomas físicos de estresse na equipe de pronto atendimento. Rev esc enferm USP. 2010; 45: 722-9.

13.Fracolli LA, Chiesa AM. A percepção das famílias sobre a cartilha Toda hora é hora de cuidar. O Mundo da Saúde. 2010; 34: 36-42.

14.Martins J, Veríssimo MDLOR, Oliveira MA. Avaliação dos instrumentos do projeto nossas crianças: janelas de oportunidades, segundo agentes comunitários de saúde. Texto contexto-enferm. 2008; 17: 106-14.

15.Grippo MLVS, Fracolli LA. Avaliação de uma cartilha educativa de promoção ao cuidado da criança a partir da percepção da família sobre temas de saúde e cidadania. Rev esc enferm USP. 2008; 42: 430-6.

16.Fonseca LMM, Leite AM, Vasconcelos MGL, Castral TC, Scochi CGS. Cartilha educativa on line sobre os cuidados com o bebê pré-termo: aceitação dos usuários. Ciênc Cuid Saúde. 2007; 6: 238-44.

17.Chagas NR, Monteiro ARM. Educação em saúde e família: o cuidado ao paciente, vítima de acidente vascular cerebral. Acta Sci, Health Sci. 2006; 26: 193-204.

18.Fonseca LMM, Scochi CGS, Rocha SMM, Leite AM. Cartilha para orientação materna sobre os cuidados com o bebê prematuro. Rev Latino-am Enfermagem. 2004; 12: 65-75.

19.Caetano JA, Pagliuca LMF. Cartilha para o autoexame ocular para portadores do HIV/AIDS como tecnologia emancipatória: relato de experiência. Rev Eletr Enf [on-line]. 2006 [citado em 10 jan 2013]; 8: 241-9. Available at: www.fen.ufg.br/fen_revista/revista8_2/v8n2a09.htm.

20.Thiry-Cherques HR. Saturação em pesquisa qualitativa: estimativa empírica de dimensionamento. Rev PMKT. 2009; 3: 20-7.

21.Creswell JW. Projeto de pesquisa: método qualitativo, quantitativo e misto. 3ª ed. Porto Alegre (RS): Artmed; 2010.

22.Ministério da Saúde (Br). Conselho Nacional de Saúde. Resolução nº196 de 10 de outubro de 1996. Aprova as diretrizes e normas regulamentadoras de pesquisa envolvendo seres humanos.  Brasília(DF): Ministério da Saúde; 1996.

23.Barrett KE, Barman SM, Boitano S, Brooks HL. Fisiologia médica de Ganong. 24ª ed. Porto Alegre (RS): McGraw-Hill; 2014.

24.Jarvis C. Guia de exame físico para a enfermagem. Rio de Janeiro: Elsevier; 2012.

25.Pommier J, Guevel MR, Jourdan D. Evaluation of health promotion in schools: a realistic evaluation approach using mixed methods. BMC Public Health. 2010;10: 43.

26.Castagno VD, Fassa AG, Silva MC, Carret MLV. Carência de atenção à saúde ocular no setor público: um estudo de base populacional. Cad Public Health. 2009; 25: 2260-72.

27.Silva JV, Ferreira BFA, Pinto HS. Princípios da oftalmologia: avaliação oftalmológica. 2013 [citado em 12 out 2014] Disponível em: http://www.ligadeoftalmo.ufc.br/arquivos/ed_-_principios_-_avaliacao_oftalmologica. pdf

28.Oliveria MS, Fernandes AFC, Sawada NO. Manual educativo para o autocuidado da mulher mastectomizada: um estudo de validação. Texto contexto-enferm. 2008; 17: 115-23.

29.Barros EJL, Santos SSC, Gomes GC, Erdmann AL. Gerontotecnologia educativa voltada ao idoso estomizado à luz da complexidade. Rev Gaúcha Enferm. 2012; 33: 95-101.

30.Song F, Holland R, Barton GR, Bachmann M, Blyth A, Maskrey V et al. Self-help materials for the prevention of smoking relapse: study protocol for a randomized controlled trial. Trials. 2012; 13:69.

31.Eckman MH, Wise R, Leonard AC, Dixon E, Burrows C, Khan F et al. Impact of health literacy on outcomes and effectiveness of an educational intervention in patients with chronic diseases. Patient Educ Couns. 2012; 87(2):143-51.