Amiyotrofik Lateral Skleroz'lu (ALS) hastaların evde bakım gereksinimleri ve bakım verenlerin bakım yükünün belirlenmesi
Determining the home-care needs of patients with Amyotrophic Lateral Sclerosis (ALS) and care-burden of caregivers
Yazar: NAİLE BAYRAMOVA
Danışman: PROF. DR. AYFER KARADAKOVAN
Ege Üniversitesi / Sağlık Bilimleri Enstitüsü / Hemşirelik Bölümü / İç Hastalıkları Hemşireliği Ana Bilim Dalı
Derece: Doktora, 2008
Konu: Hemşirelik = Nursing

Özet:
ALS tanısı alan hastaların evde bakım gereksinimlerini, yaşam kalitesini ve bakım verenlerin bakım verme yükünü ve yaşam kalitesini belirlemek, etkin hemşirelik eğitiminin hastaların ve bakım verenlerin yaşadıkları güçlükler ve yaşam kaliteleri üzerindeki etkilerini incelemek amacıyla tanımlayıcı ve yarı deneysel yapılmıştır. Araştırmanın örneklemini 30 hasta ve 30 primer bakım veren oluşturmuştur.Araştırma kapsamına alınan uygulama hastaneleri nöroloji kliniğinde kayıtlı olan hastaların adres ve telefon bilgilerine ulaşılmıştır. Adres ve telefon bilgilerine ulaştıktan sonra hastanede tedavi/kontrol nedeniyle bulunan hasta ve primer bakım verenlerle hastanede görüşülmüş, araştırmanın önemi ve amacı konusunda gerekli açıklamalar yapılmış, araştırmaya katılmayı kabul eden hasta ve bakım verenlerine onam formu imzalatılmıştır. Hastanede ulaşılamayan diğer hasta ve primer bakım verenlerine telefonla ulaşılarak araştırmanın önemi ve amacı konusunda gerekli açıklamalar yapılmış, araştırmaya katılmayı kabul eden hasta ve bakım verenlerine onların uygun olduğu bir zamanda evlerinde ziyaret edilerek tekrar araştırmanın önemi ve amacı açıklanarak araştırmaya katılım onam formu imzalatılmıştır.İlk görüşmede, hastanede izlenen ve evinde ziyaret edilen 30 hasta ve 30 primer bakım vericilere Hasta Tanıtım Formu ve Bakım Verenin Tanıtıcı Bilgileri Formları doldurulmuştur. Bu aşamada hastaların evde bakım gereksinimlerini belirlemek amacıyla hastalara ALS hastasının Günlük Yaşam Aktivite Yardım/Gereksinim Formu, hasta ve bakım verenlerin etkin hemşirelik eğitimi öncesi yaşam kalitesini belirlemek için Duke Sağlık Profili, bakım verenlerin yükünü belirlemek için BYE kullanılarak veriler toplanmıştır.Bu aşamada bakım verenlerin eğitim gereksinimlerini belirlemek için Kart Sort yöntemi ile hazırlanan, 16 sorununun yer aldığı kartlar verilerek öncelikle eğitime gereksinimi olduğu alanları belirlemeleri istenmiştir. Sorular Kuzey Amerika Hemşirelik Tanıları Derneği (NANDA/ North American Nursing Diagnosis Association) hemşirelik tanıları doğrultusunda hazırlanmıştır. 15 soru araştırmacı tarafından kartlar üzerine yazılmış olup, bir kart ise boş bırakılmıştır. Boş olan kartta bakım verenlerin diğer kartlarda yer almayan, fakat kendisinin gereksinim duyduğu konuyu yazması istenmiştir.Bu formlar hasta ve bakım verenlerin kendileri tarafından, okur-yazar olmayan, motor tutulumu olan hastaların verdiği yanıtlar ise hastalarla yüz yüze görüşülerek araştırmacı tarafından doldurulmuştur.Belirlenen eğitim gereksinimleri doğrultusunda bakım verenlere ?ALS Hasta Ve Yakınları İçin Bakım Rehberi? kitapçığı ile yazılı, aynı zamanda diz üstü bilgisayarla görsel (power-point) eğitim verilmiştir.Araştırmanın ikinci aşamasında ilk görüşmeden en az bir ay sonra hasta ve bakım verenlere evde ikinci ziyaretleri yapılmış ve bakım verenlere eğitim sonrası BYE ve Duke Sağlık Profili ölçekleri tekrar doldurtulmuş, eğitimin bakım verenlerin bakım yükü ve yaşam kalitesine etkisi değerlendirilmiştir.Verilerin değerlendirilmesinde tekrarlayan ölçümlerde tek yönlü varyans analizi (ANOVA), t testi, Post Hoc testi, Dunnett T3, kart sorularının değerlendirilmesinde ise Cluster analizi yapılmıştır.Araştırma sonucunda, bakım verenlere ihtiyaçları olduğu konularda verilen hemşirelik eğitimi sonucunda bakım yükünün azaldığı ve hastaların GYA katılma durumlarının ve yaşam kalitelerinin arttığı bulunmuştur.ALS'li hasta ve yakınlarına destek olabilecek dernek ve sosyal aktivite programlarına katılmalarının sağlanması, tüm kronik hastalıklarda olduğu gibi ALS'li hastaların evde bakımlarının sağlanması için kurumsallaştırılmış evde bakım hizmetlerinin yaygınlaştırılması önerilmiştir.

Abstract:
This study was carried out to determine the home-care needs and the quality of life of patients who received ALS diagnose and the care-burden and quality of life of the caregivers, and to investigate the affects of the effective nursing training on the difficulties experienced by patients and their caregivers and on their quality of life.This research which was planned as descriptively and semi-experimentally has been carried out with the patients and their primary caregivers who were registered in the neurology clinics of Ege University and Dokuz Eylul University Hospitals and Izmir Training and Research Hospital, who met the limits of the research and who accepted to participate in this research. The sampling of the research included 30 patients and 30 primary caregivers.In order for the research to be carried out written approvals from institutes and from authors of the scales used and written consent from both patients and also their caregivers were obtained.The data of the research were collected in tiers.Address and telephone information of patients who were registered in neurology clinics of the hospitals included in the scope of research was accessed. Subsequently, the patients and their primary caregivers who were present in the hospital for treatment/control were interviewed, necessary explanations related to the importance and the aim of the research were made and the consent form (Appendix-I) was signed by the patients and their primary caregivers who accepted to participate. For patients and their primary caregivers who were not reached at the hospital telephone communication was used and the importance and the aim of the research was explained, home visits were made at a particular time convenient to the patients and their primary caregivers who accepted to participate and the importance and the aim of the research was re-explained and the consent form was signed (Appendix-I).In the first interview, 30 patients and 30 primary caregivers who were either observed in the hospital or visited at home completed the Patient Identification Form (Appendix-II) and the Demographic Data of the Care Provider (Appendix-IV). In this stage, data was collected by using the following forms; to determine the home-care needs of patients an ALS Patient Daily Life Activity Assistance/Need Form (Appendix-III); to determine the quality of life of patients and their primary caregivers prior to effective nursing training a Duke Health Profile; to determine the burden of caregivers a Caregiver Burden İnventory (CBI) (Appendix-IX, X) (Appendix-V, VI, VII, VIII).In this stage to determine the training needs of the caregivers, some cards (Appendix-XII) which were prepared by Card Sort method and contained 16 questions were delivered and they were asked to specify the areas where they primarily need training. Questions were prepared in accordance with the nursing diagnoses of North American Nursing Diagnosis Association (NANDA). 15 questions were written on the cards by the researcher and one card left blank. An this card the caregivers was required to write any subject not included in the other cards.These forms were filled out by the patients and their primary caregivers themselves, but the answers provided by the patients who were illiterate or with motor involvement were completed by the researcher through face to face interview.In direction of the specified training needs a booklet called ?Care Guidance for ALS Patients and Their Relatives? (Appendix-XI), as well as a visual training (power-point) on a Laptop were provided.In the second stage of the research, from the first interview at least a month later a second home-visit was performed for patients and their primary caregivers, caregivers were asked to recomplete post-training CBI and Duke Health Profile scales and the affect of training on the care burden and quality of life of the caregivers was evaluated.During data evaluation, in the repeated measurements one-way variance analysis (ANOVA), t test, Post Hoc test and Dunnett T3 and in the evaluation of card questions Cluster analysis, were performed.Caregivers the mean total scores of the 1st and 2nd applications of CBI scale were found between 60.13 and 53.23 and the standard deviation values were found between 23.93 and 25.12. The relationship between the mean total scores of the 1st and 2nd applications of CBI scale was found statistically significant (r=0.93, p=0.00, p<0.0 5).Caregivers the mean total scores of the 1st and 2nd applications of Duke Health Profile scale were found between 18.07 and 20.07 and the standard deviation value between 5.97 and 4.07.The relationship between the mean total scores of the 1st and 2nd applications of Duke Health Profile scale were investigated but a statistically significant relationship was not found (r=0.11, p=0.12, p>0.0 5).The lowest and the highest values of the answers given by caregivers and patients to Patient Daily Life Activity Assistance/Need Form scale and their mean scores and standard deviation values were calculated; the mean total scores of the scale varied between 20.13 and 20.07 and the standard deviation values between 10.34 and 4.07.The correlation between patients? mean total scores of Duke Health Profile scale and caregivers 1st and 2nd applications of quality of life scale was also investigated. As a result of correlation while there was not a significant relationship between the mean total scores that patients received from quality of life scale and the mean total scores that caregivers received from the 1st application of quality of life scale (r=0.14, p=0.46, p>0.01), a significant relationship was found between the mean total scores of the 2nd application (r=0.63, p=0.00, p<0.01).A statistically significant relation was found between patients? mean total scores of Patient Daily Life Activity Assistance/Need Form and the mean total scores they received from quality of life scale (r=0.73, p=0.00, p<0.01). According to these data, it can be seen that as patients? participation into daily life activities is increased, their quality of life is also escalated.In caregivers there was not a significant relationship between the mean total scores of Patient Daily Life Activity Assistance/Need Form and the mean total scores received from the 1st application of quality of life scale (r=0.30, p=0.10, p>0.01); however, a significant relationship was found between the mean total scores of Patient Daily Life Activity Assistance/Need Form and the mean total scores of the 2nd application of the quality of life scale (r=0.57, p=0.00, p<0.01).The relationship between the mean total scores of Patient Daily Life Activity Assistance/Need and the mean total scores that caregivers received from care-burden inventory was investigated, a significant relationship was found between item mean total scores, except for the mean total scores of developmental and emotional burden in 1st application of CBI (r=0.29, p=0.11, p>0.01). At the end of 2nd application of CBI a significant relationship was found between all item mean total scores.Although there was not a significant relationship between the mean total scores of CBI applied to caregivers and the gender, number of children, education level, closeness degree to the patients, whether they influenced the treatment of chronic diseases, whether they received assistance from others and whether they received information related to ALS, a significant relationship was found between age, marital status, occupation, social security, income status, place of residence and length of care provision.The relationship between care providers? mean total scores of Patient Daily Life Activity Assistance/Need and quality of life scales and number of children, education level, social security, marital status, occupation, place of residence, closeness degree to the patient, whether they influenced the treatment of chronic diseases and whether they received assistance from others was significant.In patients participated in study a significant relationship was found between the mean total scores of Patient Daily Life Activity Assistance/Need and quality of life scales and gender, education level, marital status, occupation and income level.There was an insignificant relationship between patients? mean total scores of Patient Daily Life Activity Assistance/Need and quality of life scales and age groups, gender, occupation, social security and whether they received information about ALS.A Card Sort method was used to determine the training needs of the caregivers and they sorted the questions included in the cards the according to precedence. According to the result of research, the most important and concerned questions by the caregivers were; ?How should I feed my patient, because he/she is having a hard time swallowing? My patient frequently suffers from constipation. What am I suppose to do?, My patient can not cough and can not expectorate mucus, Is this hazardous? What should I do if respiratory distress develops in my patient??At the end of the research it was discovered that as a result of nursing training provided on topics need by caregivers, the care-burden decreased and patients participation in Patient Daily Life Activity Assistance/Need and their quality of life escalated.To facilitate the participation of ALS patients and their relatives in associations and social activity programs that can be helpful to them and as in all chronic diseases to provide care for the patients with ALS at their homes, spreading the use of institutionalized home-care services is recommended.