Contenuto dell'articolo principale
Abstract
INTRODUCTION: Glaucoma is often a misdiagnosed pathology and is one of the main causes of blindness in the world population.Glaucoma frequentlycauses limitations in theactivities of daily livingand changes the patient's quality of life. AIM: The purpose of our study is to describe the life experiences of subjects in southern Italy suffering from glaucoma.
METHOD: Phenomenological study
RESULTS: From the analysis of interviews six main themes emerged:(1) a profound change in lifestyle, (2) casual diagnosis,(3) independent research,(4) fear of blindness,(5) fear of being a burden to family, and (6) fear of familial pathology. Two additional themes appeared: the subjects felt lucky not to have a deadly disease and were uncertain about the future.
CONCLUSION: The negative aspects prevail over any positive facets. A deep understanding of these experiences can help health care professionals to deliver correct holistic support. Keywords: Glaucoma, lived experience, phenomenological study
L'esperienza di vita dei pazienti con glaucoma: uno studio fenomenologico
INTRODUZIONE: Il glaucoma è una delle principali cause di cecití nel mondo. Spesso la sua diagnosi avviene in maniera occasionale; tale patologia comporta limitazione nella vita quotidiana dei soggetti che ne sono affetti, alterando la qualití di vita.
SCOPO: Lo scopo del nostro studio è quello di descrivere l'esperienza di vita dei soggetti affetti da glaucoma
METODO: una metodologia fenomenologica è stata utilizzata per questo studio
RISULTATI: Dall'analisi delle interviste sono emersi sei temi principali: (1) un profondo cambiamento nello stile di vita, (2) la diagnosi casuale, (3) la ricerca indipendente, (4) la paura della cecití , (5) la paura di essere un peso per la famiglia e (6) la paura di patologia familiare. Due temi aggiuntivi sono apparsi: i soggetti si sentivano "fortunati di non avere una malattia mortale" e "incerezzai circa il futuro".
CONCLUSIONI: Gli aspetti negativi prevalgono su tutte le sfaccettature positive. Una profonda comprensione di queste esperienze può aiutare gli operatori sanitari a fornire una corretta assistenza olistica ed a ideare programmi educative specifici.
Parole chiave: Glaucoma, esperienza di vita, studio fenomenologico
Dettagli dell'articolo
Riferimenti
- Abdull, M. M., Chandler, C., & Gilbert, C. (2016). Glaucoma, "the silent thief of sight": patients' perspectives and health seeking behaviour in Bauchi, northern Nigeria. BMC Ophthalmol, 16, 44.
- Agorastos, A., Skevas, C., Matthaei, M., Otte, C., Klemm, M., Richard, G., et al. (2013). Depression, anxiety, and disturbed sleep in glaucoma. J Neuropsychiatry Clin Neurosci, 25(3), 205-213.
- Brown, S. A. (1990). Studies of educational interventions and outcomes in diabetic adults: a meta-analysis revisited. Patient Educ Couns, 16(3), 189-215.
- Burke, K. M., LeMone, P., & Mohn-Brown, E. (2007). Medical-surgical nursing care (2nd ed.). Upper Saddle River, N.J.: Pearson/Prentice Hall.
- Cesareo, M., Ciuffoletti, E., Ricci, F., Missiroli, F., Giuliano, M. A., Mancino, R., et al. (2015). Visual disability and quality of life in glaucoma patients. Prog Brain Res, 221, 359-374.
- Chan, E. W., Li, X., Tham, Y. C., Liao, J., Wong, T. Y., Aung, T., et al. (2016). Glaucoma in Asia: regional prevalence variations and future projections. Br J Ophthalmol, 100(1), 78-85.
- Cohen, M. Z., Kahn, D. L., & Steeves, R. H. (2000). Hermeneutic phenomenological research : a practical guide for nurse researchers. Thousand Oaks, Calif.: Sage Publications.
- Day, A. C., Baio, G., Gazzard, G., Bunce, C., Azuara-Blanco, A., Munoz, B., et al. (2012). The prevalence of primary angle closure glaucoma in European derived populations: a systematic review. Br J Ophthalmol, 96(9), 1162-1167.
- Glen, F. C., & Crabb, D. P. (2015). Living with glaucoma: a qualitative study of functional implications and patients' coping behaviours. BMC Ophthalmol, 15, 128.
- Hahn, S. R. (2009). Patient-centered communication to assess and enhance patient adherence to glaucoma medication. Ophthalmology, 116(11 Suppl), S37-42.
- Iyigun, E., Tastan, S., Ayhan, H., Coskun, H., Kose, G., & Mumcuoglu, T. (2016). Life Experiences of Patients With Glaucoma: A Phenomenological Study. J Nurs Res.
- Kyari, F., Abdull, M. M., Bastawrous, A., Gilbert, C. E., & Faal, H. (2013). Epidemiology of glaucoma in sub-saharan Africa: prevalence, incidence and risk factors. Middle East Afr J Ophthalmol, 20(2), 111-125.
- Lacey, J., Cate, H., & Broadway, D. C. (2009). Barriers to adherence with glaucoma medications: a qualitative research study. Eye (Lond), 23(4), 924-932.
- Laugesen, J., Hassanein, K., & Yuan, Y. (2015). The Impact of Internet Health Information on Patient Compliance: A Research Model and an Empirical Study. J Med Internet Res, 17(6), e143.
- Lazzarini, G., Santagati, M., & Bollani, L. (2007). Tra cura degli altri e cura di sé. Percorsi di inclusione lavorativa e sociale delle assistenti familiari. Milan.
- Loch, A. A. (2012). Stigma and higher rates of psychiatric re-hospitalization: Sao Paulo public mental health system. Rev Bras Psiquiatr, 34(2), 185-192.
- Mabuchi, F., Yoshimura, K., Kashiwagi, K., Yamagata, Z., Kanba, S., Iijima, H., et al. (2012). Risk factors for anxiety and depression in patients with glaucoma. Br J Ophthalmol, 96(6), 821-825.
- Mays, N., & Pope, C. (1995). Rigour and qualitative research. BMJ, 311(6997), 109-112.
- Michelessi, M., Lindsley, K., Yu, T., & Li, T. (2014). Combination medical treatment for primary open angle glaucoma and ocular hypertension: a network meta-analysis. Cochrane Database Syst Rev, 2014(11).
- Nguyen, A. M., van Landingham, S. W., Massof, R. W., Rubin, G. S., & Ramulu, P. Y. (2014). Reading ability and reading engagement in older adults with glaucoma. Invest Ophthalmol Vis Sci, 55(8), 5284-5290.
- Polit, D. F., & Beck, C. T. (2014). Essentials of nursing research : appraising evidence for nursing practice (8th ed.). Philadelphia: Wolters Kluwer Health /Lippincott Williams & Wilkins.
- Prior, M., Francis, J. J., Azuara-Blanco, A., Anand, N., Burr, J. M., & Glaucoma screening Platform Study, g. (2013). Why do people present late with advanced glaucoma? A qualitative interview study. Br J Ophthalmol, 97(12), 1574-1578.
- Ramulu, P. (2009). Glaucoma and disability: which tasks are affected, and at what stage of disease? Curr Opin Ophthalmol, 20(2), 92-98.
- Ramulu, P. Y., van Landingham, S. W., Massof, R. W., Chan, E. S., Ferrucci, L., & Friedman, D. S. (2012). Fear of falling and visual field loss from glaucoma. Ophthalmology, 119(7), 1352-1358.
- Sabatè, E. (2003). Adherence to long-term therapies: Evidence for action. Geneva, Switzerland: World Health Organization.
- Simeone, S., Coehn, M. Z., Savini, S., Pucciarelli, G., Alvaro, R., & Vellone, E. (2016). [The lived experiences of stroke caregivers three months after discharge of patients from rehabilitation hospitals]. Prof Inferm, 69(2), 103-112.
- Simeone, S., Perrone, M., Dell'Angelo, G., Rea, T., Gargiulo, G., Ferrigno, S., et al. (2015). [Mechanical ventilation and early weaning: a qualitative study on patient's experiences in an intensive care unit]. Assist Inferm Ric, 34(4), 188-193.
- Simeone, S., Savini, S., Cohen, M. Z., Alvaro, R., & Vellone, E. (2015). The experience of stroke survivors three months after being discharged home: A phenomenological investigation. Eur J Cardiovasc Nurs, 14(2), 162-169.
- Sleath, B., Blalock, S. J., Carpenter, D. M., Sayner, R., Muir, K. W., Slota, C., et al. (2015). Ophthalmologist-patient communication, self-efficacy, and glaucoma medication adherence. Ophthalmology, 122(4), 748-754.
- Slight, C., Marsden, J., & Raynel, S. (2009). The impact of a glaucoma nurse specialist role on glaucoma waiting lists. Nurs Prax N Z, 25(1), 38-47.
- Tanabe, S., Yuki, K., Ozeki, N., Shiba, D., Abe, T., Kouyama, K., et al. (2011). The association between primary open-angle glaucoma and motor vehicle collisions. Invest Ophthalmol Vis Sci, 52(7), 4177-4181.
- Tastan, S., Iyigun, E., Bayer, A., & Acikel, C. (2010). Anxiety, depression, and quality of life in Turkish patients with glaucoma. Psychol Rep, 106(2), 343-357.
- Tsai, J. C. (2009). A comprehensive perspective on patient adherence to topical glaucoma therapy. Ophthalmology, 116(11 Suppl), S30-36.
- Vellone, E., Piras, G., Venturini, G., Alvaro, R., & Cohen, M. Z. (2012). The experience of quality of life for caregivers of people with Alzheimer's disease living in Sardinia, Italy. J Transcult Nurs, 23(1), 46-55.
- Walt, J. G., Rendas-Baum, R., Kosinski, M., & Patel, V. (2011). Psychometric evaluation of the Glaucoma Symptom Identifier. J Glaucoma, 20(3), 148-159.
- Wu, P. X., Guo, W. Y., Xia, H. O., Lu, H. J., & Xi, S. X. (2011). Patients' experience of living with glaucoma: a phenomenological study. J Adv Nurs, 67(4), 800-810.
- Yochim, B. P., Mueller, A. E., Kane, K. D., & Kahook, M. Y. (2012). Prevalence of cognitive impairment, depression, and anxiety symptoms among older adults with glaucoma. J Glaucoma, 21(4), 250-254
Riferimenti
Abdull, M. M., Chandler, C., & Gilbert, C. (2016). Glaucoma, "the silent thief of sight": patients' perspectives and health seeking behaviour in Bauchi, northern Nigeria. BMC Ophthalmol, 16, 44.
Agorastos, A., Skevas, C., Matthaei, M., Otte, C., Klemm, M., Richard, G., et al. (2013). Depression, anxiety, and disturbed sleep in glaucoma. J Neuropsychiatry Clin Neurosci, 25(3), 205-213.
Brown, S. A. (1990). Studies of educational interventions and outcomes in diabetic adults: a meta-analysis revisited. Patient Educ Couns, 16(3), 189-215.
Burke, K. M., LeMone, P., & Mohn-Brown, E. (2007). Medical-surgical nursing care (2nd ed.). Upper Saddle River, N.J.: Pearson/Prentice Hall.
Cesareo, M., Ciuffoletti, E., Ricci, F., Missiroli, F., Giuliano, M. A., Mancino, R., et al. (2015). Visual disability and quality of life in glaucoma patients. Prog Brain Res, 221, 359-374.
Chan, E. W., Li, X., Tham, Y. C., Liao, J., Wong, T. Y., Aung, T., et al. (2016). Glaucoma in Asia: regional prevalence variations and future projections. Br J Ophthalmol, 100(1), 78-85.
Cohen, M. Z., Kahn, D. L., & Steeves, R. H. (2000). Hermeneutic phenomenological research : a practical guide for nurse researchers. Thousand Oaks, Calif.: Sage Publications.
Day, A. C., Baio, G., Gazzard, G., Bunce, C., Azuara-Blanco, A., Munoz, B., et al. (2012). The prevalence of primary angle closure glaucoma in European derived populations: a systematic review. Br J Ophthalmol, 96(9), 1162-1167.
Glen, F. C., & Crabb, D. P. (2015). Living with glaucoma: a qualitative study of functional implications and patients' coping behaviours. BMC Ophthalmol, 15, 128.
Hahn, S. R. (2009). Patient-centered communication to assess and enhance patient adherence to glaucoma medication. Ophthalmology, 116(11 Suppl), S37-42.
Iyigun, E., Tastan, S., Ayhan, H., Coskun, H., Kose, G., & Mumcuoglu, T. (2016). Life Experiences of Patients With Glaucoma: A Phenomenological Study. J Nurs Res.
Kyari, F., Abdull, M. M., Bastawrous, A., Gilbert, C. E., & Faal, H. (2013). Epidemiology of glaucoma in sub-saharan Africa: prevalence, incidence and risk factors. Middle East Afr J Ophthalmol, 20(2), 111-125.
Lacey, J., Cate, H., & Broadway, D. C. (2009). Barriers to adherence with glaucoma medications: a qualitative research study. Eye (Lond), 23(4), 924-932.
Laugesen, J., Hassanein, K., & Yuan, Y. (2015). The Impact of Internet Health Information on Patient Compliance: A Research Model and an Empirical Study. J Med Internet Res, 17(6), e143.
Lazzarini, G., Santagati, M., & Bollani, L. (2007). Tra cura degli altri e cura di sé. Percorsi di inclusione lavorativa e sociale delle assistenti familiari. Milan.
Loch, A. A. (2012). Stigma and higher rates of psychiatric re-hospitalization: Sao Paulo public mental health system. Rev Bras Psiquiatr, 34(2), 185-192.
Mabuchi, F., Yoshimura, K., Kashiwagi, K., Yamagata, Z., Kanba, S., Iijima, H., et al. (2012). Risk factors for anxiety and depression in patients with glaucoma. Br J Ophthalmol, 96(6), 821-825.
Mays, N., & Pope, C. (1995). Rigour and qualitative research. BMJ, 311(6997), 109-112.
Michelessi, M., Lindsley, K., Yu, T., & Li, T. (2014). Combination medical treatment for primary open angle glaucoma and ocular hypertension: a network meta-analysis. Cochrane Database Syst Rev, 2014(11).
Nguyen, A. M., van Landingham, S. W., Massof, R. W., Rubin, G. S., & Ramulu, P. Y. (2014). Reading ability and reading engagement in older adults with glaucoma. Invest Ophthalmol Vis Sci, 55(8), 5284-5290.
Polit, D. F., & Beck, C. T. (2014). Essentials of nursing research : appraising evidence for nursing practice (8th ed.). Philadelphia: Wolters Kluwer Health /Lippincott Williams & Wilkins.
Prior, M., Francis, J. J., Azuara-Blanco, A., Anand, N., Burr, J. M., & Glaucoma screening Platform Study, g. (2013). Why do people present late with advanced glaucoma? A qualitative interview study. Br J Ophthalmol, 97(12), 1574-1578.
Ramulu, P. (2009). Glaucoma and disability: which tasks are affected, and at what stage of disease? Curr Opin Ophthalmol, 20(2), 92-98.
Ramulu, P. Y., van Landingham, S. W., Massof, R. W., Chan, E. S., Ferrucci, L., & Friedman, D. S. (2012). Fear of falling and visual field loss from glaucoma. Ophthalmology, 119(7), 1352-1358.
Sabatè, E. (2003). Adherence to long-term therapies: Evidence for action. Geneva, Switzerland: World Health Organization.
Simeone, S., Coehn, M. Z., Savini, S., Pucciarelli, G., Alvaro, R., & Vellone, E. (2016). [The lived experiences of stroke caregivers three months after discharge of patients from rehabilitation hospitals]. Prof Inferm, 69(2), 103-112.
Simeone, S., Perrone, M., Dell'Angelo, G., Rea, T., Gargiulo, G., Ferrigno, S., et al. (2015). [Mechanical ventilation and early weaning: a qualitative study on patient's experiences in an intensive care unit]. Assist Inferm Ric, 34(4), 188-193.
Simeone, S., Savini, S., Cohen, M. Z., Alvaro, R., & Vellone, E. (2015). The experience of stroke survivors three months after being discharged home: A phenomenological investigation. Eur J Cardiovasc Nurs, 14(2), 162-169.
Sleath, B., Blalock, S. J., Carpenter, D. M., Sayner, R., Muir, K. W., Slota, C., et al. (2015). Ophthalmologist-patient communication, self-efficacy, and glaucoma medication adherence. Ophthalmology, 122(4), 748-754.
Slight, C., Marsden, J., & Raynel, S. (2009). The impact of a glaucoma nurse specialist role on glaucoma waiting lists. Nurs Prax N Z, 25(1), 38-47.
Tanabe, S., Yuki, K., Ozeki, N., Shiba, D., Abe, T., Kouyama, K., et al. (2011). The association between primary open-angle glaucoma and motor vehicle collisions. Invest Ophthalmol Vis Sci, 52(7), 4177-4181.
Tastan, S., Iyigun, E., Bayer, A., & Acikel, C. (2010). Anxiety, depression, and quality of life in Turkish patients with glaucoma. Psychol Rep, 106(2), 343-357.
Tsai, J. C. (2009). A comprehensive perspective on patient adherence to topical glaucoma therapy. Ophthalmology, 116(11 Suppl), S30-36.
Vellone, E., Piras, G., Venturini, G., Alvaro, R., & Cohen, M. Z. (2012). The experience of quality of life for caregivers of people with Alzheimer's disease living in Sardinia, Italy. J Transcult Nurs, 23(1), 46-55.
Walt, J. G., Rendas-Baum, R., Kosinski, M., & Patel, V. (2011). Psychometric evaluation of the Glaucoma Symptom Identifier. J Glaucoma, 20(3), 148-159.
Wu, P. X., Guo, W. Y., Xia, H. O., Lu, H. J., & Xi, S. X. (2011). Patients' experience of living with glaucoma: a phenomenological study. J Adv Nurs, 67(4), 800-810.
Yochim, B. P., Mueller, A. E., Kane, K. D., & Kahook, M. Y. (2012). Prevalence of cognitive impairment, depression, and anxiety symptoms among older adults with glaucoma. J Glaucoma, 21(4), 250-254