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LITHUANIAN UNIVERSITY OF HEALTH SCIENCES MEDICAL ACADEMY
Žaneta Valiulienė
HEALTH PROBLEMS OF
PALLIATIVE
CARE PATIENTS WITH ONCOLOGICAL
AND HEART DISEASES AND THEIR
ASSOCIATIONS WITH SPIRITUALITY
Summary of Doctoral Dissertation Biomedical Sciences, Nursing (10B)
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The dissertation was prepared at the Faculty of Nursing, Medical Academy, Lithuanian University of Health Sciences, during the period of 2009–2013.
Scientific Supervisor
Prof. Dr. Arvydas Šeškevičius (Medical Academy, Lithuanian University of Health Sciences, Biomedical Sciences, Nursing – 10B)
The dissertation is defended at the Nursing Research Council of Lithuanian Uni-versity of Health Sciences.
Chairman
Prof. Dr. Habil. Aleksandras Kriščiūnas (Medical Academy, Lithuanian University of Health Sciences, Biomedical Sciences, Nursing – 10B)
Members:
Prof. Dr. Jūratė Macijauskienė (Medical Academy, Lithuanian University of Health Sciences, Biomedical Sciences, Nursing – 10B)
Assoc. Prof. Dr. Vilija Malinauskienė (Medical Academy, Lithuanian University of Health Sciences, Biomedical Sciences, Public Health – 09B)
Prof. Dr. Andrius Narbekovas (Vytautas Magnus University, Humanitarian Scien-ces, Theology – 02H)
Prof. Dr. Artūras Razbadauskas (Klaipėda University, Biomedical Sciences, Nur-sing – 10B)
Opponents:
Prof. Dr. Habil. Vita Lesauskaitė (Medical Academy, Lithuanian University of Health Sciences, Biomedical Sciences, Nursing – 10B)
Prof. Dr. Laima Sajienė (Vytautas Magnus University, Social Sciences, Educolo-gy – 07S)
The dissertation will be defended at the open session of the Nursing Research Council of Medical Academy, Lithuanian University of Health Sciences, in the auditorium of E-studies Department, on September 30, 2013
Address: Sukilėlių 17, LT-50009 Kaunas, Lithuania.
The summary of the doctoral dissertation was sent on August 30, 2013.
The dissertation is available in the Library of Lithuanian University of Health Sciences.
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LIETUVOS SVEIKATOS MOKSLŲ UNIVERSITETAS MEDICINOS AKADEMIJA
Žaneta Valiulienė
ONKOLOGINĖMIS IR ŠIRDIES LIGOMIS
SERGANČIŲ PALIATYVIŲJŲ PACIENTŲ
SVEIKATOS SUTRIKIMAI IR JŲ SĄSAJOS
SU DVASINGUMU
Daktaro disertacijos santrauka Biomedicinos mokslai, slauga (10B)
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Disertacija rengta 2009–2013 metais Lietuvos sveikatos mokslų universiteto, Medici-nos akademijos, Slaugos fakultete
Mokslinis vadovas
prof. dr. Arvydas Šeškevičius (Lietuvos sveikatos mokslų universiteto, Medicinos akademija, biomedicinos mokslai, slauga – 10B).
Disertacija ginama Lietuvos sveikatos mokslų universiteto Medicinos akademi-jos Slaugos mokslo krypties taryboje.
Pirmininkas
prof. habil. dr. Aleksandras Kriščiūnas (Lietuvos sveikatos mokslų universitetas, Medicinos akademija, biomedicinos mokslai, slauga – 10B)
Nariai:
prof. dr. Jūratė Macijauskienė (Lietuvos sveikatos mokslų universitetas, biomedi-cinos mokslai, slauga – 10B)
doc. dr. Vilija Malinauskienė (Lietuvos sveikatos mokslų universitetas, biomedici-nos mokslai, visuomenės sveikata – 09B)
prof. dr. Andrius Narbekovas (Vytauto Didžiojo universitetas, humanitariniai mokslai, teologija – 02H)
prof. dr. Artūras Razbadauskas (Klaipėdos universitetas, biomedicinos mokslai, slauga – 10B)
Oponentai:
prof. habil. dr. Vita Lesauskaitė (Lietuvos sveikatos mokslų universitetas, biomedi-cinos mokslai, slauga – 10B)
prof. dr. Laima Sajienė (Vytauto Didžiojo universitetas, socialiniai mokslai, edu-kologija – 07S)
Disertacija ginama viešame Lietuvos sveikatos mokslų universiteto Slaugos mokslo krypties tarybos posėdyje 2013 m. rugsėjo 30 d. 11 val. Lietuvos sveikatos mokslų universiteto E-studijų skyriaus auditorijoje.
Adresas: Sukilėlių pr. 17, LT-50009 Kaunas, Lietuva. Disertacijos santrauka išsiuntinėta 2013 m. rupgjūčio 30 d.
Disertaciją galima peržiūrėti Lietuvos sveikatos mokslų universiteto bibliotekoje. Adresas: Eivenių 6, LT-50161 Kaunas, Lietuva.
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ABBREVIATIONS
FACIT-SP – Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being Scale
HADS – Hospital Anxiety and Depression Scale ICD – International Classification of Diseases NYHA – New York Heart Association
OR – Odds ratio
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INTRODUCTION
Relevance of the study. Oncological diseases are and remain an impor-tant issue of public health across all countries of the world. Oncological diseases affect about 9 million people worldwide every year [WHO Natio-nal Cancer Control programmes, 2002]. It is estimated that this number will increase to 15 million by 2020 [www.hi.lt/lsic, 2010]. In Lithuania, up to 14 000 new cancer cases are registered annually. Even about 50% of cancer patients are curable; however, this disease still threatens inhabitants of the whole world. Physicians are concerned about increasing cancer mortality rates. Cancer ranks third as a cause of overall mortality and mor-bidity. The symptoms of malignant tumors manifest when a malignant process is already advanced; therefore, patients refer to physicians too late, and the majority of patients need palliative care.
Most importantly, too little is discussed about the prevention of these diseases in Lithuania. Although recently many efforts are being made in educating people on health issues [Luneckaitė, 2009], patients do not believe they can have cancer and do not undergo regular screening. Pa-tients with progressing disseminated cancer need special care – symptom control, i.e., palliative care [Buzgova, 2012]. This area of healthcare is not popular in our country, and the system is still under development, though in West Europe this medical area was legalized and implemented already in 1965 [Watson, 2004]. Palliative care in Lithuania was legalized only in 2007, and since then a unified continuous system is being developed: support at home, day clinics, and inpatient units. Only with the help of single enthusiasts, the palliative care system is becoming more recognized [Šeškevičius, 2004; Luneckaitė, 2009].
Morbidity due to cardiovascular diseases in Lithuania remains high. According to the data of the Lithuanian Department of Statistics, the Ministry of Health of the Republic of Lithuania, cardiovascular diseases are the leading cause of death. In 2009, there were 23 822 patients with chronic heart failure in Lithuania [www.hi.lt/lsic, 2010]. Cardiovascular diseases account for one-third of all disability cases [Grabauskienė, 2005]. According to the data of the Health Information Centre, Institute of Hygiene, in 2010, death due to chronic heart failure (ICD code I.50) occurred in 544 patients. Therefore, the early identification of palliative care patients according to the set criteria and provision of holistic care to them in order to relieve suffering are of paramount importance.
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Healthcare professionals psychologically and methodically guide pallia-tive patients in order to maintain and preserve an appropriate level of health, promote their self-development and self-education, and ensure a proper quality of life. However, little attention is given to spiritual support, although the WHO defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” Nowadays, the ideas of humanism and unconditional respect toward other person are being spread in Lithuania, but physical, psychological, social and spiritual health problems among palliative care patients do not get the attention they deserve, there is no single continuous system, and palliative care is not a priority area of medicine.
Scientific Novelty. There are numerous articles in the scientific litera-ture that describe the quality of life of palliative care patients at the phy-sical, psychological, and social levels and that mainly analyze the impact of pain control and other somatic symptoms on quality of life. However, the studies being carried out confirm that a problem in palliative care appears to be multidimensional. Most investigators emphasize only parti-cular aspects of this problem, mostly physical, and the impact of spiritual disorders on patients’ physical symptoms as well as social and psycholo-gical health problems has not been sufficiently addressed. Spiritual health disorders often remain unrecognized due to the lack of healthcare pro-fessionals’ knowledge, or no attention at all is paid to spiritual health disorders. Thus, spiritual support is necessary in order the patient could manage a crisis and improve quality of life. The lack of such a universal theory confirms the need of further interdisciplinary holistic research, addressing not only physical, psychological, and social health problems, but spiritual health aspects as well. Therefore, it is very important to scientifically ground what physical, psychological, and social demands are and what association between them and spiritual demands is, how the patient evaluates suffering and life, whether a religious belief helps while being ill, and what the patient’s attitude toward God and hope is. This research was the first in Lithuania to analyze physical, psychological, and social health problems among palliative care patients with oncological and heart diseases and to determine their associations with spirituality during the course of the disease.
8 Objective and tasks
The aim of the study was to determine physical, social, mental, and spiritual health problems of palliative care patients with oncological and heart diseases and their associations with spirituality.
Tasks:
1. To determine and evaluate physical health problems of palliative care patients with oncological and heart diseases.
2. To determine and evaluate social health problems of palliative care patients with oncological and heart diseases.
3. To determine and evaluate mental health disorders of palliative care patients with oncological and heart diseases.
4. To determine and evaluate spiritual health problems of palliative care patients with oncological and heart diseases.
5. To analyze and assess associations between health problems of palliative care patients with oncological and heart diseases and patients’ spirituality.
1. MATERIALS AND METHODS
1.1. Study course and sample sizeA cross-sectional study was conducted from April 1, 2010, to April 30, 2010. The permission to carry out the study was given on March 4, 2010, by Vilnius Regional Biomedical Research Ethics Committee (No. 158200-02-132-42). All survey procedures were agreed with the hospital administ-ration. Hospital heads gave the permission to carry out the study.
Of the 8 Lithuanian hospitals with 5–14 beds for palliative care, 5 insti-tutions were selected according to the particular inclusion criteria. Specia-lists’ teamwork was ensured in these hospitals.
During 2010–2011, palliative care services were provided to 958 patients in these 5 palliative care hospitals. It was estimated that the samp-le should include 300 randomly sesamp-lected (every third patient) palliative care patients with malignant diseases or chronic heart failure (NYHA func-tional class IV). The sample size was calculated based on the “Elementary Sampling Theory” tables by Yamane [Yamane, 1967].
The study population comprised 150 palliative care cancer patients with a Karnofsky index of less than 50% (ICD-10, codes C00-C97) and 150
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palliative care patients with heart diseases, which were complicated by NYHA class IV chronic heart failure, and with a Barthel index of less than 40 (ICD-10, code I50).
The exclusion criteria were as follows: underestimation of study rele-vance, blindness, disorientation, coma, no knowledge of Lithuanian lan-guage, and inability to read and write. Patients with both a malignant di-sease and NYHA class IV chronic heart failure though they were palliative care patients were excluded as well.
All the respondents gave their written informed consent. On the survey day, the questionnaires were distributed among palliative care patients with oncological and heart diseases. Survey anonymity and the fact that the data will be used only for summarizing the results were emphasized. The questionnaires were coded. They were distributed among patients, and the investigator waited for them to be completed and collected them. A total of 320 anonymous questionnaires were distributed; 320 were comple-ted and returned (response rate, 100%). However, 5 respondents returned blank questionnaires, and 15 questionnaires had incomplete data or were completed incorrectly. Therefore, 300 anonymous questionnaires were sui-table for analysis.
1.2. Study population
1.2.1. Palliative care patients with oncological diseases
In a study sample of patients with oncological diseases (N=150), there were 44.7% of men and 55.3% of women. The respondents’ age ranged from 33 to 86 years. The mean age of men and women was 68.1±11.3 and 71.7±9.5 years, respectively (P>0.05). There were no significant differen-ces in the distribution of men and women by age groups (χ2=7.060, df=4,
P=0.133).
The respondents were stratified into 4 groups by education: no educa-tion or primary educaeduca-tion, secondary educaeduca-tion, special secondary or voca-tional education, and higher university education. There were no signifi-cant differences in the distribution of men and women by educational groups (χ2=3.409, df=5, P=0.637).
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1.2.2. Palliative care patients with heart diseases
Among patients with heart diseases participating in the study (N=150), 46.0% were men and 54.0% were women. The respondents’ age ranged from 33 to 86 years. The mean age of men and women was 68.1±11.3 and 71.7±9.5 years, respectively (P>0.05). There were no significant diffe-rences in the distribution of men and women with heart diseases by age groups. There was a significant difference in the percentages of men and women by educational groups (χ2=11.603, df=4, P=0.05). The study showed that 42.0% of men had no education or had primary education, while this percentage among women accounted for 13.6% (P<0.05). One-third (33.3%) of men and half (50.7%) of women had secondary education (P<0.05). Almost equal proportions of men and women had vocational education (11.6% and 14.8%, respectively; P>0.05). Almost every eight man and fifth woman with oncological diseases had higher education (13.1% vs. 19.9%, P<0.05).
1.3. Survey instrument
An anonymous questionnaire based on the literature sources was deve-loped in order to carry out the study. The Hospital Anxiety and Depression Scale (HADS) and the Functional Assessment of Chronic Illness Thera-py – Spiritual Well-Being Scale (FACIT-SP) were used as well. The FACIT-SP questionnaire is publicly accessible. It was translated into Li-thuanian after a repeated revision. This version was back-translated by two bilingual translators. Both the versions of English translation were com-pared with the original questionnaire. As the translated and original ver-sions were almost identical, no changes in the Lithuanian version were done. The final questionnaire was discussed, and all uncertainties and ambiguities were clarified. The internal consistency of the questionnaire was sufficient (Cronbach alpha, 0.841).
The evaluation of anxiety and depression severity was as follows: no (a score of 0–7), moderately expressed (a score of 8–10), very expressed (a score of ≥11). The Cronbach alpha coefficient for anxiety and depression areas was 0.84 and 0.77, respectively.
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A pilot survey was undertaken to evaluate the validity of the question-naire developed by the authors. In April 2010, 50 palliative care patients were surveyed. The pilot survey aimed to evaluate the following:
1. Whether respondents comprehend the questions and response cate-gories provided;
2. Whether the number of response categories provided is sufficient for respondents;
3. Whether the extent of the questionnaire and order and arrangement of questions are appropriate;
4. What information about palliative care and its goals the respondents have.
After the pilot survey, the questionnaire was slightly modified: 3 unin-formative questions were excluded, technical errors were corrected, and the order of questions was changed.
The final questionnaire included 24 questions. It had the following parts: 1. General information. Palliative care patients were asked to indicate
age, sex, and education.
2. Social domain. It was aimed to disclose patients’ financial problems and changes in relationships in the family and communication with friends, colleagues, and neighbors.
3. Physical health domain. The aspects of energy, experienced pain, and fatigue were analyzed; health status, well-being, and various physical complaints were evaluated as well.
4. Numerical pain rating scale. It was aimed to rate pain experienced by the respondents. A score of 1 indicated no pain; 2, mild pain; 3, mo-derate; 4, severe pain; and 5, very severe pain.
5. Psychological aspects. Psychological harmony as well as anxiety and depression of palliative care patients were evaluated.
6. Questions on spiritual, religious, and personal beliefs. Palliative care patients’ sense and relationship with God, benefits of belief, actions toward a belief, and spiritual emotions were analyzed.
The internal reliability of the instrument was sufficient with a Cronbach alpha coefficient ranging from 0.693 to 0.836. The overall reliability of the study questionnaire was 0.781 (Table 1.3.1).
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Table 1.3.1. General Cronbach alpha values
Questions Cronbach alpha
Social relationship domain 0.693
Physical functioning domain 0.716
Pain domain 0.836
Psychological domain 0.785
Spiritual-religious domain 0.841
1.4. Statistical analysis
Statistical data analysis was performed by using SPSS program, ver-sion 16. The Kolmogorov-Smirnov test was employed to check if the distri-bution of categorical and continuous variables was normal. Descriptive statistics was used to describe the data. The Student t test was applied to compare the means of continuous variables between two groups. Differen-ces in the proportions of categorical variables were assessed by using the chi-square test. The z criterion was employed to check the hypothesis about equality of two proportions. The nonparametric Mann-Whitney test and its z value were used to compare the proportions between two groups, and for the comparison of proportions among more than two groups, ANOVA and the nonparametric Kruskal-Wallis test along with its χ2 value were applied. Spearman correlation analysis was used to assess a relationship between nonparametric variables. The results of statistical data analysis are depic-ted in tables and figures. Logistic regression analysis was performed to evaluate likelihoods for particular event to occur. The stepwise regression analysis method was used. Its application allows the selection of factors that were significantly associated with a greater likelihood of developing particular events. During analysis, a logistic regression coefficient β was determined, and odds ratios (OR) and their 95% confidence intervals (CI) were calculated for every variable analyzed. Pain and social relationships were entered into the model as dependent factors, while sex, age, educa-tion, social aspects, psychological state, felling of usefulness, spiritual characteristics, and religious belief, as independent factors.
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2. RESULTS
2.1. Physical health problems of study population
Without solving physical health problems, other health disorders cannot be managed. In this study, the main symptoms of physical health prob-lems, which are documented among palliative care patients most common-ly, were identified and analyzed.
2.1.1. Physical health problems among palliative care patients with oncological diseases
The evaluation of physical health problems among palliative care pa-tients with oncological diseases revealed that one patient had 12.09 disor-ders on the average (range, 7–16). Fatigue was experienced by all the men and women; 94.0% of men and 95.2% of women reported physical weakness (P>0.05); 92.2% and 97.6%, lack of energy (P>0.05); 88.1% and 92.8%, reduced appetite (P>0.05); and 92.5% and 94.0%, respectively, weight loss (P>0.05). Pain was experienced by 83.6% of men and 89.2% of women (P>0.05). Other physical health problems were less prevalent. Two-thirds of men experienced insomnia (65.7%) and constipation (65.7%). Every second man complained of swallowing dysfunction, dysp-nea, and urinary incontinence (53.7%, 47.8%, and 49.3%, respectively); every fourth man, of leg edema (23.9%); and every fifth man, of hiccup and itching (each 19.4%). Fecal incontinence was reported by 14.9% of men, and none of the men mentioned a considerable increase in weight, appetite, and excessive sleepiness. Almost two-thirds of women experien-ced insomnia and swallowing dysfunction (63.9% and 65.1%, respecti-vely); 60.2%, constipation; and 50.6%, urinary incontinence. Every third woman suffered from hiccup and dyspnea (31.3% and 34.9%, respecti-vely); 21.7% of women, from fecal incontinence; 19.3%, from itching; and 18.1%, from led edema. None of the women reported a considerable in-crease in weight, appetite, and excessive sleepiness. Physical health prob-lems did not differ significantly comparing men and women. Older pa-tients reported physical weakness significantly more frequently than their younger counterparts did. Vomiting was more common among older patients as compared with younger ones. Pain was less common among patients aged 55 to 64 years as compared with the younger and oldest respondents.
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2.1.2. Physical health problems among palliative care patients with heart diseases
The evaluation of physical health disorders among palliative care pa-tients with heart diseases revealed that one patient had 9.99 disorders on the average (range, 3–12). The results showed that all men and nearly all women complained of physical weakness; 88.7% of men and 88.9% of women experienced dyspnea (P>0.05); 88.4% and 87.7%, leg edema (P>0.05); 79.7% and 77.8%, energy loss (P>0.05); 73.9% and 87.7%, chest pain (P>0.05); and 73.9% and 82.7%, insomnia (P>0.05), respecti-vely. There were no significant differences between sexes. Other comp-laints of physical health were not so common. More than half (58.0%) of men reported having fecal incontinence; dyspnea, hiccup, and pressure ulcers were mentioned by 52.2%, 50.7%, and 43.5% of men, respectively. Every third man experienced constipation, urinary incontinence, and appetite loss (39.1%, 33.3%, and 30.4%, respectively). Itching and pain was reported by 26.1% and 15.9% of men, respectively. Weight loss, swallowing dysfunction, insomnia, increased or reduced appetite were the least prevalent complaints among men. About half of women experienced hiccup (55.7%), fecal incontinence (56.8%), cough (49.4%), and pressure ulcers (54.3%). Less than half of women suffered from constipation and urinary incontinence (44.4% and 43.2%, respectively), and one-third of women complained of appetite loss and itching (34.6% and 30.9%, respectively). Pain and weight loss were reported by 14.8% and 11.1% of women, respectively, and excessive sleepiness, swallowing dysfunction, and increased or reduced appetite were the least common complaints men-tioned by women. There were no significant differences in the prevalence of less common physical health problems between men and women. The oldest patients reported considerable weight loss significantly more fre-quently than their younger counterparts did.
There were no significant differences in the prevalence of other physical health problems, such as physical weakness, insomnia, excessive sleepi-ness, hiccup, itching, vomiting, nausea, dyspnea, leg edema, pain, energy loss, fatigue, appetite loss, swallowing dysfunction, chest pain, pressure ulcers, constipation, fecal incontinence, cough, increased appetite, reduced appetite, and urinary incontinence by age groups.
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The analysis of physical health problems among patients with heart diseases by different educational groups showed that respondents with spe-cial secondary or vocational education experienced constipation (χ2=21.891,
df=6, P=0.002), fecal incontinence (χ2=19.684, df=6, P=0.005), and cough (χ2=21.385, df=3, P=0.001) significantly more frequently than those with primary or higher education.
2.1.3. Intensity of physical health problems among palliative care patients with oncological and heart diseases
To determine and evaluate the intensity of physical health problems, a 5-point Likert scale transformed to a 100-5-point scale was used. The intensity of physical health problems on a 100-point scale among patients with on-cological diseases is depicted in Fig. 2.1.3.1. Patients with onon-cological di-seases mostly suffered from fatigue (a score of 100.0), hiccup (a score of 55.32), chest pain (a score of 53.75), and fecal incontinence (a score of 53.75).
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Fig. 2.1.3.1. The intensity of physical health problems on a 100-point scale
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Fig. 2.1.3.2 shows the intensity of physical health problems on a 100-point scale in patients with heart diseases. Patients with heart diseases mostly suffered from decreased appetite (a score of 72.50), urinary incontinence (a score of 59.48), fecal incontinence (a score of 59.19), and constipation (a score of 59.01).
Fig. 2.1.3.2. The intensity of physical health problems on a 100-point scale
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2.1.4. Impact of pain experienced by respondents on the characteristics of quality of life
In palliative care, pain relief is of paramount importance as it contributes to changes in mental and spiritual health and leads to suffering and grief. All the patients with oncological diseases reported that pain interfered with daily activities during the last 7 days, mood, ability to walk, sleep, and communication with other people. The majority of men and women (95.5% and 92.8%, respectively) mentioned that pain interfered with joy of life. All the men and women with oncological diseases reported pain relief to be effective.
Among patients with heart diseases, a greater percentage of women reported pain interfering with daily activities during the last 7 days (82.7% vs. 69.6%, P=0.058). Equal proportions of men and women reported that pain interfered with mood (75.4% and 76.5%, respectively). Pain interfered with ability to walk in every fifth man (20.3%) and every eighth woman (12.3%). Pain was a cause of disturbed sleep in 65.2% of men and 69.1% of women (P>0.05). Pain interfered with joy of life and commu-nication with others in 84.1% and 71.0% of men versus 87.7% and 69.1% of women, respectively. Three-fourths of men and women with heart di-seases (75.4% and 75.3%, respectively) reported pain relief to be effective.
The analysis of associations between pain and characteristics of quality of life by age groups showed that all patients with oncological diseases reported pain interfering with daily activities within the last 7 days, mood, ability to walk, and communication with other people. In all age groups, 100% of patients with oncological diseases mentioned that pain relief was effective. Every second 30- to 54-year-old patient with oncological disea-ses or heart diseadisea-ses mentioned that pain interfered with daily activities within the last 7 days. Pain interfered with mood (χ2=7.854, df=3, P=0.049) and sleep (χ2=8.135, df=6, P=0.035) more frequently in the oldest patients with heart diseases than in their younger counterparts.
Comparison by educational groups showed that there were no significant differences except for the percentage distribution of patients with heart diseases answering to the question whether pain interfered with sleep: patients with vocational education reported less frequently that pain inter-fered with sleep compared with other educational groups (χ2=10.482, df=6,
P=0.015). All patients with oncological diseases mentioned that pain
inter-fered with daily activities within the last 7 days, mood, ability to walk, sleep, and communication with other people and that pain relief was effective.
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2.2. Social health problems of study population
Social health problems, most commonly faced by terminally ill patients, are interpersonal, self-care as well as financial and legal. Social health problems can worsen other patients’ health aspects as well. They had to be eliminated in the presence of a multidisciplinary palliative care team. Un-solved social health problems can cause or worsen physical, psychological, and spiritual health problems.
2.2.1. Social health problems among palliative care patients with oncological diseases
The analysis of patients’ responses to the question “Do you have a loved one who cares about your feelings and experiences?” showed that 61.2% of men and 41.0% of women did not have a loved one who would care about patient’s feelings and experiences (P<0.05). Only one-fourth of men and women had a loved one (Fig. 2.2.1.1).
χ2
=8.242, df=2, P=0.017, *P<0.05
Fig. 2.2.1.1. Percentage distribution of patients with oncological diseases
answering to the question if there was a loved one who cared about patient’s feelings and experiences in each response category by sex
The analysis of responses to the question “Do your family members help find solutions?” among patients with oncological diseases showed that 59.7% of men and 43.4% of women responded that family members did not help find solutions (P<0.05) (Fig. 2.2.1.2). Family members helped find solutions only for 23.9% of men and 26.5% of women. Other
charac-20
teristics of social support between men and women did not differ signi-ficantly.
χ2
=4.952, df=2, P=0.08, *P<0.05
Fig. 2.2.1.2. Percentage distribution of patients with oncological
diseases answering to the question if family members helped find solutions in each response category by sex
The analysis of social health problems among patients with oncological diseases by age groups revealed that the youngest patients were given support by their family members more frequently than the oldest ones (χ2=43.553, df=6, P=0.0005).
Answering to the questions “Do you have a loved one who cares about your feelings and experiences?” and “Do your family members help find solutions?” greater percentages of 55- to 64- and 65- to 74-year-old patients with oncological diseases responded positively as compared with the patients aged 75 years and more (χ2=12.173, df=6, P=0.054 and
χ2=16.402, df=6, P=0.009, respectively).
Answering to the question if the disease caused stress to family members, significant differences were found comparing patients by age groups (χ2=14.929, df=6, P=0.016). The youngest patients (aged 30-54 years) more frequently reported that their disease caused stress to their family members than older patients (aged 55-64 years) (66.7% and 21.1%, respectively; P<0.05).
There were no significant differences in other aspects of social health problems by age and educational groups.
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2.2.2. Social health problems among palliative care patients with heart diseases
The analysis of social health problems among palliative care patients with heart diseases by sex revealed that the patient’s disease caused stress to family members of about half of men and women (46.4% and 53.1%, respectively; P>0.05), 39.1% of men and 23.5% of women felt support from family members (P>0.05), and 37.7% of men and 46.9% of women were worried about daily expenses (P>0.05). Every fifth patient pointed out that family members helped find solutions and there was a loved one who cared about his/her feelings and experiences; 14.5% of men and 22.2% of women mentioned receiving support from their neighbors. Every fourth man and woman reported receiving emotional support from the family; 10.1% of men and 12.3% of women pointed out that treatment worsened their financial status (P>0.05). Isolation from friends because of disease was experienced by every sixth man and every fourth woman, and 4.3% of men and 3.7% of women reported to be isolated from their family because of disease (P>0.05). The abovementioned social health problems did not differ significantly between men and women.
The analysis of social health problems among palliative care patients with heart diseases showed significant differences regarding some aspects of social health. The youngest patients, i.e., those aged 30 to 54 years, were not supported by their family members more frequently that their older counterparts (χ2=11.603, df=6, P=0.05). If 100% of patients aged 30 to 54 years were not given support by their family members, in the 55- to 64-year-old group, this percentage accounted for 23.1% (P<0.05). The percentage of patients aged 75 years and more who were given support by their family members was significantly smaller as compared with the percentages of 55- to 64-year-old as well as 65- to 74-year-old patients.
The evaluation of isolation from the family because of disease conside-ring age groups showed that younger patients felt isolated from their family because of disease more frequently than their older counterparts (χ2=15.450, df=6, P=0.037). If half (50%) of patients aged 30 to 54 years felt isolated from their family, the proportion of those aged 75 and more was only 5.2% (P<0.05).
The analysis of responses to the question “Do you feel isolated from your friends because of disease?” by educational groups showed that pa-tients with special secondary or vocational education felt isolated from their friends because of disease more frequently as compared with other
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educational groups (χ2=13.056, df=6, P=0.038). If the percentage of pa-tients with special secondary or vocational education, who felt isolated from their friends because of disease, was 28.0%, the corresponding percentage of those with primary education was almost 3-fold smaller (9.8%) (P<0.05).
It is very important for palliative patients to have a close friend to share their worries and concerns. Patients with higher education had friends to share the joys and sorrows with more frequently than those with other education (χ2=14.545, df=6, P=0.022). If the percentage of patients with higher education, who had friends to share the joys and sorrows with, was 15.0%, the corresponding percentage of those with secondary education was almost 10-fold smaller (1.6%) (P<0.05).
2.3. Mental health disorders of study population
Depression and anxiety are the main psychological characteristics des-cribing the experiences of patients with a terminal illness. Psychological suffering has an impact on physical and social health problems and spirituality. All this leads to poor patient’s quality of life. Psychological suffering is determined by family values, social and cultural environment, public opinion, emotional preparation of terminally ill patients, faith, and inner strength.
By using the HADS, it was shown that the high levels of anxiety and depression were experienced by 89.6% and 89.6% of men and 84.3% and 94.0% of women with oncological diseases, respectively. There was no significant difference in the percentages of men and women with heart diseases (95.7% and 87.7%, respectively) who experienced high levels of anxiety as compared with the corresponding percentages of patients with oncological diseases.
Among oncological patients, depression and anxiety were frequent events in all age groups. Among patients with heart diseases, depression and anxiety were highly expressed in all age groups and their frequency did not depend on age.
The analysis of mental health disorders among patients with oncological diseases by age groups revealed that younger patients, i.e., those aged 30 to 54 years and 55 to 64 years, were self-confident significantly more frequently (91.7% and 52.6%, respectively) than those aged 75 years and more (9.4%) (χ2=43.553, df=6, P=0.0005). Patients aged 55 to 64 years felt internal peace more frequently (19.2%). Internal peace helped more
fre-23
quently for patients aged 55 to 64 years (11.5%), 65 to 74 years (13.3%), and 75 years and more (19.5%). A positive answer to the question “Are you satisfied with how you cope with your disease?” was given more frequently by 30- to 54-year-old patients (33.3%); the least satisfied were the oldest patients (7.5%). Patients aged 30 to 54 years were tolerant most frequently (33.3%); the least tolerant were 65- to 74-year-old and the oldest patients.
Among patients with heart diseases, 55- to 64-year-old and 65- to 74-year-old patients (42.3% and 40.0%, respectively) were self-confident significantly more frequently (χ2=11.603, df=6, P=0.05). The greatest per-centage of patients who felt internal peace was among 55- to 64-year olds (19.2%). None of the patients from the 30- to 54-year age group felt inter-nal peace. Satisfaction with disease coping and toleration toward others were most frequently mentioned by the youngest patients, i.e., those aged 34 to 54 years (50.0%).
2.4. Spiritual health problems of study population
Spirituality issues can arise during every moment of the life, but most frequently, they arise at the end of the life. Spiritual help is focused on the issues of meaning of life, existence, and religion that often arise to a patient and his/her family, when a patient has a terminal and progressive illness.
2.4.1. Patients’ sense of God’s presence
The analysis of the frequency of spiritual health disorders (sense of God’s presence) among palliative care patients with oncological diseases by sex revealed no significant differences between men and women (65.7% and 79.5%). More than half of men and three-fourths of women with oncological diseases always felt a deep internal spiritual peace and harmony while praying; 76.1% of men and 86.7% of women always felt the presence of God during their whole life. A similar percentage of men and women always felt God and found strength in their faith and religion; two-thirds of men and nearly 80% of women found blessedness in their religion and spirituality and felt God’s presence and God’s help in daily activities as well as God’s love for themselves and God’s love through other people.
The analysis of the frequency of spiritual health disorders (sense of God’s presence) among palliative care patients with heart diseases by sex
24
showed no significant differences between men and women. The over-whelming majority of both men and women with heart diseases (more than 90%) always felt a deep internal spiritual peace and harmony while pray-ing and always experienced a relationship with God through the whole life. A similar percentage of men and women always found strength in their faith and religion, blessedness in their religion and spirituality, and God’s help in daily activities as well as felt God’s love for themselves and God’s love through other people.
2.4.2. Patients’ spiritual relationship with God
The analysis of the frequency of spiritual health disorders (spiritual relationship with God) among palliative care patients with oncological diseases by sex revealed that women were asking God for his mercy through a prayer more frequently than men (80.7% and 62.7%, respec-tively; P<0.05) (Fig. 2.4.2.1). A significantly greater percentage of men than women reported that their life had no meaning or goal (43.3% and 25.3%, respectively; P<0.05) (Fig. 2.4.2.2). There were no significant differences in the frequencies of other spiritual care characteristics (spiri-tual relationship with God) between men and women.
χ2
=8.162, df=2, P=0.016, *P<0.05
Fig. 2.4.2.1. Percentage distribution of patients with oncological diseases
answering to the question if there was a possibility to ask God for his mercy through a prayer in each response category by sex
25
χ2
=5.593, df=2, P=0.05, *P<0.05
Fig. 2.4.2.2. Percentage distribution of patients with oncological
diseases answering to the question if their life had meaning or goal in each response category by sex
Both men and women became more religious (86.6% and 94.0%, res-pectively). About two-thirds of men and women were worried about death (65.7% and 66.3%, respectively).
The analysis of the frequency of spiritual health disorders (spiritual relationship with God) among palliative care patients with heart diseases by sex showed all men and women reporting that God often treated them unfairly. Nearly half of men and women sometimes felt disappointed with God. The overwhelming majority of both men and women (about 90%) really felt the presence of God, reported that following the God’s laws was an essential part of their life, always were in a good mood while going to church, followed God’s laws in every decision making, became more religious during the disease, had a feeling that God advised them while committing a sin, and did penance against God. Regarding other aspects of spiritual health (spiritual relationship with God), positive responses ac-counted for half of all the responses, and there were no significant diffe-rences between men and women. The comparison of answers by sex sho-wed that men were angry with God significantly more frequently than wo-men were (79.7% and 65.4%, respectively; P<0.05) (Fig. 2.4.2.3). A greater percentage of women than men did not feel guilty about their past behavior during their life (22.2% vs. 8.7%, P<0.05) (Fig. 2.4.2.4). There
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were no significant differences in other aspects of spiritual relationship with God comparing men and women.
χ2
=3.768, df=2, P=0.05, *P<0.05
Fig. 2.4.2.3. Percentage distribution of patients with heart diseases
answering to the question if they were angry with God in each response category by sex
χ2=6.259, df=2, P=0.044, *P<0.05
Fig. 2.4.2.4. Percentage distribution of patients with heart diseases
answering to the question if they felt guilty about their past behavior during their life in each response category by sex
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2.4.3. Pastoral care among patients with oncological and heart diseases
The analysis of need for spiritual support (pastoral care) among pallia-tive care patients with oncological diseases showed no significant diffe-rences in the need for pastoral care between men and women. More than four-fifths of men and women with oncological diseases wished to be gi-ven pastoral care services in the hospital. Egi-ven 70.1% of men and 67.5% of women received pastoral care during this study (P>0.05), and 71.6% of men and 78.3% of women prayed in the hospital (P>0.05). Men’s and wo-men’s opinions toward other aspects of pastoral care did not differ signi-ficantly as well.
The analysis of need for spiritual support (pastoral care) among pal-liative care patients with heart diseases showed no significant differences in the need for pastoral care between men and women. The majority of both men and women with heart diseases wished to be given pastoral care services in the hospital (87.0% and 87.7%, respectively). Even 72.5% of men and 74.1% of women received pastoral care during this study (P>0.05), o 78.3% of men and 70.4% of women prayed in the hospital (P>0.05). Men’s and women’s opinions toward other aspects of pastoral care did not differ significantly as well.
2.4.4. Expression of patients’ religiosity
The analysis of the expression of religiosity among palliative care pa-tients with oncological diseases by sex revealed that the overwhelming majority (more than 80%) of the respondents fasted for religious reasons. Two-thirds of the respondents hoped for the salvation from Jesus Christ, our Lord, often prayed for ill persons, prayed constantly, consoled sad persons, led others to the practicing of prayer, and stated that the clergy should visit patients. The evaluation of responses by sex groups showed some significant differences between men and women. The percentage of men who did not fast for religious reasons was 6-fold greater than that of women (7.5% and 1.2%, respectively; P<0.05) (Fig. 2.4.4.1). Men reported more frequently than women that they did not lead other persons to the practicing of prayer (25.4% and 10.8%, respectively; P<0.05) (Fig. 2.4.4.2), but a greater percentage of men than women mentioned that the clergy should visit patients (77.6% and 59.0%, respectively; P<0.05) (Fig. 2.4.4.3). Men’s and women’s opinions toward other aspects of spiritual and theological virtues did not differ significantly.
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χ2
=7.382, df=2, P=0.026, *P<0.05
Fig. 2.4.4.1. Percentage distribution of palliative care patients with
oncological diseases answering to the question if they fasted for religious reasons in each response category by sex
χ2
=5.699, df=2, P=0.06, *P<0.05
Fig. 2.4.4.2. Percentage distribution of palliative care patients with
oncological diseases answering to the question if they led others to the practicing of prayer in each response category by sex
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χ2
=10.225, df=2, P=0.006, *P<0.05
Fig. 2.4.4.3. Percentage distribution of palliative care patients with
oncological diseases answering to the question if the clergy should visit patients in the hospital in each response category by sex
The analysis of the expression of religiosity among palliative care patients with heart diseases by sex revealed that about four-fifths of the respondents fasted for religious reasons and two-thirds of patients hoped for the salvation from Jesus Christ, our Lord, often prayed for ill persons, consoled sad persons, led others to the practicing of prayer, and stated that the clergy should visit patients. The evaluation of responses by sex groups showed some significant differences between men and women. Women sought divine help to perform good things more frequently than men did (74.1% and 55.1%, respectively; P<0.05). Men’s and women’s opinions toward other aspects of spiritual and theological virtues did not differ significantly.
2.4.5. Pastoral care in hospital
The majority of team members consider pastoral care as an additional part of their work. A physician, a nurse, a social worker, a psychologist, etc. should think about this. However, traditionally it happened that spiritual and religious support in the hospital is given by a priest-chaplain. About half of men and women with oncological diseases (41.8% and 43.4%, respectively) mentioned that pastoral care was provided most frequently by a priest; 22.4% and 25.3%, by a nun; and the lowest percen-tages, by a physician and a social worker (Fig. 2.4.5.1).
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χ2
=3.094, df=4, P=0.552
Fig. 2.4.5.1. Percentage distribution of palliative care patients with
oncological diseases answering to the question who provided pastoral care most frequently in each response category by sex
The majority of patients with oncological diseases reported that medical personnel were competent to provide pastoral care. Only every tenth pa-tient thought that medical personnel were incompetent (Fig. 2.4.5.2).
χ2
=0.210, df=2, P=0.907
Fig. 2.4.5.2. Percentage distribution of palliative care patients with
oncological diseases answering to the question if personnel were competent in providing pastoral care in each response category by sex
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Nearly half of patients with heart diseases reported that most frequently pastoral care was provided by a priest (46.4% of men and 48.1% women). About 30% of respondents reported that pastoral care was provided by a nun, and the lowest percentages, by a nurse and a physician (Fig. 2.4.5.3).
χ2
=0.978, df=4, P=0.925
Fig. 2.4.5.3. Percentage distribution of palliative care patients
with heart diseases answering to the question who provided pastoral care most frequently in each response category by sex
2.5. Relationships of physical, social, psychological, and spiritual health problems of study population
2.5.1. Analysis of relationships of health problems among palliative care patients with oncological diseases
The relationships of physical, social, psychological, and spiritual health problems among palliative care patients were determined by using the Spearmen correlation and logistic regression analysis.
Correlation analysis of various social, psychological, and spiritual cha-racteristics among palliative care patients with oncological diseases sho-wed that financial problems were directly related to a sense of God’s presence and social communication. Good relationships in the family were positively correlated with social communication, family care about the patient, and support given by friends and neighbors. There was a positive correlation between the patient’s psychological state and good rela-tionships in the family, sense of God’s presence, spiritual relationship with
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God, and pastoral care. Patients’ pastoral care was positively associated good relationships in the family, friends’ care about the patient, good psy-chological state, sense of God’s presence, spiritual relationship with God, and absence of a person who cared about patient’s feelings and experien-ces. The expression of religiosity was directly correlated with social communications, social relationship with God, and patients’ pastoral care.
Multiple logistic regression analysis was performed in order to estimate a likelihood of having better social relationships for palliative care patients with oncological diseases depending on various factors (Table 2.5.1.1). Sex, age, education, income, family care about the patient, psychological state, patient’s usefulness for the family, sense of God’s presence, patient’s spiritual relationship with God, patients’ pastoral care, expression of religiosity, aspects of religiosity, and religious belief were entered into the model as independent factors. The analysis revealed that younger age reduced a likelihood of having better social relationships (with every year by 6% on the average). The patients who were cared about by their family and those who felt useful for their family were 2.76 and 2.5 times, respectively, more likely to have better social relationships. Other factors that were entered into the model did not have any significant impact on having better social relationships.
Table 2.5.1.1. Likelihood of having better social relationships for
pallia-tive care patients with oncological diseases depending on various factors (multiple logistic regression)
Factor B OR 95% CI P
Lower
limit Upper limit
Age –0.061 0.941 0.902 0.982 0.005
Sex (female) –0.025 0.976 0.435 2.190 0.953 Income (sufficient) 0.440 1.553 0.578 4.172 0.383 Family care about the patient (yes) 1.015 2.761 1.090 6.991 0.032 Psychological state (good) 0.382 1.466 0.576 3.728 0.422 Patient’s usefulness for family (yes) 0.916 2.499 1.059 5.893 0.036 Sense of God’s presence (yes) 0.160 1.173 0.397 3.465 0.773 Relationship with God (yes) 0.067 1.069 0.352 3.248 0.907 Pastoral care (yes) 1.123 3.075 0.892 10.596 0.075 Expression of religiosity (yes) 0.628 1.873 0.817 4.292 0.138
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Table 2.5.1.1. Continued
Factor B OR 95% CI P
Lower
limit Upper limit
Religiosity
Religiosity (doubts) –1.593 0.203 0.021 1.923 0.165 Religiosity (believes, does not practice) –1.948 0.143 0.016 1.255 0.079 Religiosity (believes, practices) –1.432 0.239 0.030 1.905 0.177 Belief (yes) 0.409 1.505 0.485 4.669 0.479 Family support (yes) –0.573 0.564 0.230 1.380 0.210
χ2
=42.531, df=15, P=0.0005, Cox-Snell R2=0.247, Nagelkerke R2=0.332.
Multiple logistic regression analysis was also performed in order to estimate a likelihood of experiencing less severe pain for palliative care patients with oncological diseases depending on various factors (Table 2.5.1.2) Sex, age, education, income, family care about the patient, psy-chological state, patient’s usefulness for family, sense of God’s presence, patient’s spiritual relationship with God, patients’ pastoral care, expression of religiosity, aspects of religiosity, and religious belief were entered into the model as independent factors. The analysis showed that being a female and good social relationships with the family increased a likelihood of experiencing less severe by 4.30 and 3.54 times, respectively (borderline significance). The good patient’s psychological state and positive expre-ssion of religiosity were associated with a 13.80- and 7.23-fold greater likelihood of experiencing less severe pain. Other factors that were entered into the model did not have any significant impact on experiencing less severe pain.
Table 2.5.1.2. Likelihood of experiencing less severe pain for palliative
care patients with oncological diseases depending on various factors (multiple logistic regression)
Factor B OR 95% CI P
Lower
limit Upper limit
Age 0.013 1.013 0.953 1.077 0.680
Sex (female) 1.459 4.303 0.967 19.157 0.055 Income (sufficient) –0.432 0.649 0.141 2.995 0.579 Good relationships with family (yes) 1.264 3.539 0.967 12.950 0.056
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Table 2.5.1.2. Continued
Factor B OR 95% CI P
Lower
limit Upper limit
Family support (yes) 0.503 1.654 0.471 5.805 0.433 Family care about patient’s experiences
(yes)
–2.526 0.080 0.012 0.545 0.010 Psychological state (good) 2.625 13.800 2.769 68.766 0.001 Patient’s usefulness to family (yes) –2.690 0.068 0.011 0.428 0.004 Sense of God’s presence (yes) –0.016 0.984 0.189 5.124 0.984 Relationship with God (yes) –1.501 0.223 0.041 1.218 0.083 Pastoral care (yes) 1.110 3.035 0.446 20.629 0.256 Expression of religiosity (yes) 1.978 7.230 1.943 26.901 0.003 Religiosity
Religiosity (doubts) –2.757 0.063 0.005 0.859 0.038 Religiosity (believes, does not practice) –3.063 0.047 0.004 0.607 0.019 Religiosity (believes, practices) –3.490 0.031 0.002 0.394 0.007 Belief (yes) 0.676 1.967 0.364 10.620 0.432
χ2
=51.723, df=16, P=0.0005, Cox-Snell R2=0.292, Nagelkerke R2=0.484.
2.5.2. Analysis of relationships of health problems among palliative care patients with heart diseases
Correlation analysis of various social, psychological, and spiritual cha-racteristics among palliative care patients with heart diseases showed that financial problems were directly related to a sense of God’s presence and were inversely related to social communication, good relationships with the family, and support given by friends and neighbors. Good relationships in the family were positively correlated with support given by friends and neighbors and family care about the patient, and were inversely correlated with financial problems and spiritual relationship with God. There was a significant inverse correlation between the psychological state and the presence of a person who cared about patient’s feelings and experiences as well as a significant positive correlation between pastoral care, and a sense of God’s presence and a social relationship with God.
Multiple logistic regression analysis was carried out in order to estimate a likelihood of having better social relationships for palliative care patients with heart diseases depending on various factors (Table 2.5.2.1). Sex, age, education, income, family care about the patient, psychological state,
35
patient’s usefulness for family, sense of God’s presence, patient’s spiritual relationship with God, patients’ pastoral care, expression of religiosity, aspects of religiosity, and religious belief were entered into the model as independent factors. The analysis revealed that having a person who cared about patient’s experiences increased a likelihood of having better social relationships by 13.41 times. Other factors that were entered into the model did not have any significant impact on having better social relationships.
Table 2.5.2.1. Likelihood of having better social relationships for
pallia-tive care patients with heart diseases depending on various factors (multi-ple logistic regression)
Factor B OR 95% CI P
Lower
limit Upper limit
Age –0.009 0.991 0.949 1.035 0.678
Sex (female) 0.097 1.102 0.510 2.382 0.805 Income (sufficient) –0.771 0.463 0.199 1.073 0.073 Having a person who cares about
patient’s experiences (yes)
2.596 13.406 3.761 47.786 0.001
Psychological state (good) 0.247 1.280 0.572 2.862 0.548 Patient’s usefulness to family (yes) 0.322 1.380 0.490 3.886 0.542 Sense of God’s presence (yes) 0.118 1.125 0.458 2.763 0.797 Relationship with God (yes) –0.747 0.474 0.175 1.281 0.141 Pastoral care (yes) –0.383 0.682 0.244 1.907 0.466 Expression of religiosity (yes) 0.466 1.594 0.701 3.627 0.266 Religiosity
Religiosity (doubts) –0.092 0.912 0.247 3.370 0.890 Religiosity (believes, does not
practice)
–0.436 0.647 0.238 1.757 0.393 Religiosity (believes, practices) –0.523 0.593 0.166 2.121 0.421 Belief (yes) –0.512 0.599 0.238 1.508 0.277 Family support (yes) –0.009 0.991 0.949 1.035 0.678
χ2
=39.304, df=14, P=0.0005, Cox-Snell R2=0.231, Nagelkerke R2=0.308.
Multiple logistic regression analysis was also performed in order to estimate a likelihood of experiencing less severe pain for palliative care patients with heart diseases depending on various factors (Table 2.5.2.2).
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Sex, age, education, income, family support, family care about patient’s experiences, psychological state, patient’s usefulness for the family, sense of God’s presence, patient’s spiritual relationship with God, patients’ pastoral care, expression of religiosity, aspects of religiosity, and religious belief were entered into the model as independent factors. The analysis showed that having a person who cared about patient’s experiences and a patient’s feeling that he/she was needed by the family were associated with a 15.05- and 3.96-fold, respectively, greater likelihood of experiencing less severe pain. Other factors that were entered into the model did not have any significant impact on experiencing less severe pain.
Table 2.5.2.2. Likelihood of experiencing less severe pain for palliative
care patients with heart diseases depending on various factors (multiple logistic regression)
Factor B OR 95% CI P
Lower
limit Upper limit
Age 0.031 1.031 0.985 1.079 0.186
Sex (female) 0.042 1.043 0.435 2.499 0.924 Income (sufficient) –1.973 0.139 0.050 0.386 0.001 Good relationships with family (yes) –0.526 0.591 0.217 1.608 0.303 Family support (yes) –1.908 0.148 0.048 0.463 0.001 Having a person who cares about
patient’s experiences (yes)
2.711 15.047 3.723 60.821 <0.001 Psychological state (good) –2.271 0.103 0.038 0.279 0.001 Patient’s usefulness to family (yes) 1.375 3.957 1.242 12.608 0.020 Sense of God’s presence (yes) 0.937 2.553 0.909 7.172 0.075 Relationship with God (yes) 0.114 1.121 0.361 3.477 0.844 Pastoral care (yes) –0.859 0.424 0.125 1.431 0.167 Expression of religiosity (yes) 0.614 1.848 0.732 4.665 0.194 Religiosity
Religiosity (doubts) –0.237 0.789 0.185 3.374 0.749 Religiosity (believes, does not practice) 0.160 1.174 0.370 3.723 0.786 Belief (yes) –0.442 0.643 0.149 2.764 0.553
χ2=65.786, df=15, P=0.0005, Cox-Snell R2
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CONCLUSIONS
1. Pain, fatigue, physical weakness, lack of energy, decreased appetite, and weight loss were the most common complaints among palliative care patients with oncological diseases. They mostly suffered from fatigue, hiccup, chest pain, and fecal incontinence. Among palliative care patients with heart diseases, physical weakness, dyspnea, leg edema, loss of energy, chest pain, and insomnia were experienced most frequently. They mostly suffered from decreased appetite, urinary and fecal incontinence, and constipation.
2. Young and the oldest patients with oncological diseases more commonly reported not having a loved one with whom they could share their experiences and feelings. A malignant disease caused stress more commonly for the families of younger patients. Patients with heart diseases felt isolated from the family more frequently. They cared about both financial problems and relationships with the family or the presence of a loved one with whom they could share their experiences and feelings. 3. The majority of palliative care patients with oncology diseases were
found to have anxiety and depression that did not depend on sex, age, and education. Inner peace was felt by only every fifth patient. Younger oncology patients more often did not feel inner peace, but were confident more frequently. Moreover, anxiety and depression were also frequent complaints among patients with heart diseases and did not depend on age, sex, and education as well. Most patients were not satisfied with disease coping, and older patients were confident more commonly.
4. The majority of oncology patients felt God’s presence, hoped for the salvation from Jesus Christ, prayed for the ill, and felt deep inner peace. Women felt God’s presence and led a life of church spiritual virtues more frequently. Most patients with heart diseases felt God’s presence as well, but reported that God often treated them unfairly and disappointed them. Men more frequently than women were angry with God, felt guilty about their past behavior during their life, and asked for pastoral care.
5. Oncology patients who believed in God reported weight loss and chest pain more frequently, but they had less severe depression. Good social relationships in the family are directly associated with care and support
38
the patient receives from the family and friends. The patients’ psychological state and the expression of religiosity were related to their spiritual relationship with God, as well as to the pastoral care these patients receive. Palliative care patients with heart diseases who believed in God and practiced a religion experienced vomiting, chest pain, and anxiety less frequently, but their depression was more expressed. A patient’s psychological state is related to the presence of a person with whom they could share their feelings and experiences. Pastoral care is associated with the feeling of the presence of God and the spiritual relationship with God.
6. Oncological patients of younger age were less likely to have better social relationships. A feeling that the patient was needed by his/her family and proper family care increased the likelihood of having better social relationships. Being a female, patient’s satisfaction with family support and communication, good patient’s psychological state, and greater levels of religiosity were associated with a greater likelihood of having less severe pain. Patients with heart diseases who felt proper family care were more likely to have better patient-family relationships. Proper care about the patient and a feeling that the patient was needed by the family were associated with a greater likelihood to have less severe pain.
PRACTICAL RECOMMENDATIONS
1. Our study showed that palliative care patients suffer from physical, social, mental, and spiritual health problems; therefore, health care professionals should follow a holistic healthcare approach, which gives a possibility to control disease symptoms and patient’s emotions. For this, it is necessary to develop guidelines and standards for symptom management. Healthcare strategies, ensuring proper symptom management, should be followed.
2. Emphatic communication is of paramount significance for palliative care patients; therefore, while meeting patients’ expectations and improving their well-being, healthcare professionals should encourage the patient’s loved ones to participate in decision-making related to healthcare issues. It is necessary to pay attention to communication with palliative care patients in order to reduce pain experienced by a patient and improve social relationships.
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3. Healthcare policy makers have to pay attention to insufficient funding for palliative care services, which does not ensure effective pain relief and worsens patient’s social relationships.
4. More active and continuous support from a psychologist is necessary while providing palliative care services in order to reduce patients’ depression and anxiety.
5. Spiritual health problems interfere with social relationships and worsen communication with the family, friends, and healthcare professionals. Therefore, healthcare professionals should take care of not only patients’ physical, social, and mental, but also spiritual health problems, which mostly disturb spiritual harmony, and timely refer a patient to a pastoral care provider. A priest-chaplain should be involved in pastoral care more frequently and actively.
LIST OF THE AUTHOR’S PUBLICATIONS
1. Žaneta Valiulienė, Arvydas Šeškevičius. Dvasingumo raiška paliaty-viojoje priežiūroje. Sveikatos mokslai, 2011, Nr. 6, ISSN 1392-6373 p. 119-124.
2. Žaneta Valiulienė, Arvydas Šeškevičius. Paliatyviųjų pacientų, sergan-čių onkologinėmis ligomis ir lėtiniu širdies nepakankamumu, dvasinės sveikatos problemos. Sveikatos mokslai, 2012, Nr. 3, ISSN 1392-6373 p. 159-164.
3. Žaneta Valiulienė, Arvydas Šeškevičius. Paliatyviųjų onkologinėmis ligo-mis ir lėtiniu širdies nepakankamumu IV st. sergančių pacientų fizinės problemos. Sveikatos mokslai, 2012, Nr. 5, ISSN 1392-6373 p. 157-164. Other publications (2008–2013)
1. Žaneta Valiulienė. Psichologinio spaudimo raiška sveikatos priežiūros darbuotojų kolektyve. Sveikatos mokslai, 2008, Nr. 6, 1983-1986 ISSN 1392-6373.
2. Olga Riklikienė, Arvydas Šeškevičius, Žaneta Valiulienė. Palaikomojo gydymo ir slaugos ligoninės pacientams siektini slaugos rezultatai ir jų sąsajos su slaugytojų darbo specifika. Lietuvos bendrosios praktikos gydytojas, 2008, Nr. 4 p. 228-235. ISSN 1392-3218.
3. Žaneta Valiulienė. Gydytojų ir slaugytojų motyvacija dalyvauti projek-tinėje veikloje. Sveikatos mokslai, 2008, Nr. 6, 1983-1986 ISSN 1392-6373.
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SUMMARY IN LITHUANIAN
Darbo tikslas – nustatyti ir įvertinti paliatyviųjų pacientų sergančių onkologinėmis ir širdies ligomis fizinės, socialinės, psichinės ir dvasinės sveikatos sutrikimus ir jų sąsajas su dvasingumu.
Uždaviniai:
1. Nustatyti ir įvertinti paliatyviųjų onkologinėmis ir širdies ligomis sergančiųjų pacientų fizinės sveikatos sutrikimus.
2. Nustatyti ir įvertinti paliatyviųjų onkologinėmis ir širdies ligomis sergančių pacientų socialinės sveikatos sutrikimus.
3. Nustatyti ir įvertinti paliatyviųjų onkologinėmis ir širdies ligomis sergančiųjų psichikos sveikatos sutrikimus.
4. Nustatyti ir įvertinti paliatyviųjų onkologinėmis ir širdies ligomis sergančiųjų dvasinės sveikatos sutrikimus.
5. Išanalizuoti ir įvertinti onkologinių ir širdies ligomis sergančių pa-liatyviųjų pacientų sveikatos sutrikimų sąsajas su pacientų dvasin-gumu.
Vienmomentinis tyrimas buvo atliekamas 2010 m. balandžio 1 d. – 2011 m. balandžio mėnesio 30 d. Prieš atliekant tyrimą, buvo gautas Lie-tuvos bioetikos komiteto leidimas Nr. 158200-02-132-42. Visa apklausos tvarka buvo suderinta su ligoninių administracija. Gautas ligoninių vadovų leidimas vykdyti tyrimą.
Tyrimo populiacija: 150 sergančiųjų onkologinėmis ligomis paliatyviųjų pacientų, kurių Karnovskio indeksas mažesnis kaip 50 proc. (TLK–10, kodas C00–C97); 150 paliatyviųjų pacientų, sergančiųjų širdies ligomis, kurių Bartelio indeksas ne didesnis kaip 40 balų (TLK–10, kodas I50). Neįtraukimo į tyrimą kriterijai: tyrimo aktualumo neįvertinimas, aklumas, nesiorientuotumas, komos būsena, lietuvių kalbos nemokėjimas, nemokė-jimas skaityti ir rašyti, pacientai, kartu sergantieji onkologinėmis ir širdies ligomis nors jie ir buvo paliatyvieji.
Visi respondentai pasirašė tyrimo dalyvio sutikimo formą. Apklausos dieną buvo išdalintos anketos onkologinėmis ir širdies ligomis sergantiems paliatyviesiems pacientams. Išdalinta 320 anoniminių anketų, jas užpildė ir grąžino 320 respondentų (atsako dažnis – 100 proc.). Tačiau penki pacien-tai gražino visiškai neužpildytas. Peržiūrėjus visas anketas 15 buvo užpildytos nepilnai ar klaidingai. Tinkamos analizei buvo 300 anoniminių anketų. Iš tyrime dalyvavusių onkologinių pacientų (N=150) 44,7 proc. buvo vyrai ir 55,3 proc. – moterys. Respondentų amžius buvo nuo 33 iki
