Effect of Self-Care Management Program on the Quality of Life and Self-Efficacy of Geriatric Patients with Parkinson's Disease

Transcription

1 World Journal of Nursing Sciences 3S: 56-72, 2014 ISSN IDOSI Publications, 2014 DOI: /idosi.wjns Effect of Self-Care Management Program on the Quality of Life and Self-Efficacy of Geriatric Patients with Parkinson's Disease Marwa Ibrahim Mahfouz, Hanaa Abou El-soued Hussein and Magda Mahmoud Mohammad 1 Gerontological Nursing, Alexandria University, Alexandria, Egypt 2 Gerontological Nursing, Damanhur University, Damanhur, Egypt Abstract: Parkinson's disease is one of the long-term multifocal neurological conditions which have undesirable consequences on geriatric patients' independence and quality of life (QOL). So, those compromised patients need to be learn about personalized self-care interventions adopted to their needs in order to achieve finest control over their health condition, feel confident in one s ability to manage such progressive and degenerative symptoms and develop an acceptable level of progress in all life domains and overall wellbeing. The study aimed to determine the effect of self- care management program on the quality of life and self-efficacy of geriatric patients with Parkinson's disease. The study was carried out in neuropsychiatric outpatient clinic of El-Hadara Orthopedic and Traumatology University Hospital in Alexandria, Egypt. The study sample consisted of 22 geriatric patients with idiopathic Parkinsonism. Five tools were used in this study; Parkinson's disease Geriatric Patients' Demographic and Health Information Structured Interview Schedule, Mini-mental State Examination, the Modified Hoehn and Yahr Staging Scale, the Self-Efficacy for Managing Chronic Disease Scale and the 39-items Parkinson's Disease Questionnaire. Results showed that less than two thirds (63.3%) of the studied patients with Parkinson's disease reported poor quality of life of total domains. The factors most closely associated with poor QOL were mobility, body discomforts and impaired daily activities. The improvements of these features therefore become an important target in the self-care management of the disease developed in this study, in addition to the other domains affected passively with PD. After application of the educational program, an observed measured improvement in both PD geriatric patients' quality of life and their self-efficacy was evident immediately post program which returned back gradually during the follow-up weeks later, although still significant. Further, PD suffers QOL was greatly linked and correlated significantly with their self-efficacy. It could be concluded that application of self-care strategies is effective in increasing the quality of life of seniors who suffer from Parkinson's disease and help in improvement of their self-efficacy. The authors recommended that self-care interventions should be incorporated into the routine nursing practice for geriatric patients with Parkinson's disease and involving their family care-givers to affect positively their quality of life and consequently their self-efficacy. Key words: Personalized-Care Strategies Parkinson s Disease Superiority Of Life Confidence In One s Own Abilities Diseased Seniors INTRODUCTION most common neurodegenerative diseases that only outnumbered by Alzheimer s dementia in older adults [2]. The unknown etiology and unpredictable course of It is thought that the neurochemical imbalances seen in Parkinson's disease progression make it one of the more PD disrupts the neural circuitry of the basal ganglia mysterious and complex of all neurological disorders [1]. resulting in reduction in the size and speed of sequential Parkinson's disease (PD) is a progressively debilitating movements and manipulative tasks, in addition to disorder predominantly causes motor and non-motor irregularity in automated cognitive events, mood, dysfunctions and possesses the second ranking of the behavior and all other disease features [3]. Corresponding Author: Marwa Ibrahim Mahfouz, Gerontological Nursing, Alexandria University, Alexandria, Egypt. marwa871975@gmail.com. 56

2 The diagnosis of PD is done clinically as the disease relationships and activities. Although the inner feelings hasn t any biomarkers. Out of all clinical data, response to are intact, the incongruence may lead to social levodopa is the most discriminatory in the differential embarrassment among these patients [11]. diagnosis of PD from other types of Parkinsonism. While Hypophonia and other voice changes occur in scientists agree that there is a dopamine deficiency in 80-90% of these patients; and 45-50% has articulation persons with PD, the mainly cause of the dopamine loss changes. Patients are cognizant of their distractibility and still remains unidentified A mutation in LRRK2 gene is the difficulty with word-finding and thought processing while most frequent cause of the disease known to date [4]. engaging in conversation [12]. As a consequence of their The worldwide incidence of PD is thought to vary speech and communication difficulties, PD older adult between 1.5 and 22 patients/100 thousands patients reported that they experienced loss of selfpopulation/year and millions more remaining undiagnosed esteem, loss of dignity, humiliation and altered with a widely ranged prevalence in door to door surveys socialization processes ranging from apprehension, [5]. PD prevalence is 1.3% in men versus 1.6% in women disengagement, to complete withdrawal. Written [6]. Unfortunately, Egypt ranks the third in the world communication is further affected due to tremors resulting among the countries of the highest prevalence rate of the in the typical micrographic handwriting seen in PD [13]. disease with a rate of per 100 thousands population, Although drug therapy is the major treatment specifically in the rural areas, south of Cairo along the modality for the disease, it may have its own reverse River Nile, probably because of poverty [7]. consequences and side effects that can also impact the Quality of life (QOL) of geriatric patients with PD QOL for the patients causing symptoms such as comprises the total effect that this condition has on a dyskinesia, hedonistic dopamine dysregulation syndrome, person's bio-psycho-social wellbeing and his or her actual freezing, orthostatic hypotension, hallucinations, and desired life. For people living with chronic diseases psychoses and visual disturbances. Off states such as PD, QOL may change daily and even frequently potentially occur when PD medications wear off and are within the course of a day, as they struggle to adapt to no longer available to control the symptoms until more and manage the challenges which the disease thrusts medication is given and reaches an adequate blood level upon them [8]. to control patients' manifestations. Non-adherence to Often the PD older adult patient experiences a prescribed drug and other treatment regimens could result constellation of biological, psychological or emotional, in negative consequences to patients' quality of life, such cognitive and social symptomatology. The physical as increased frequency of on-off states, falls, injuries symptoms of PD typically affecting QOL are tremor, and others [14]. rigidity, bradykinesia and troubles with manual dexterity. Fortunately, there are several other beneficial Some of the aspects that affected intensely in QOL for underutilized treatment modalities available to aid in the those patients and their families include: impaired management and control of PD symptoms that include mobility, balance and nutrition; sleep disturbances, exercises, environmental design, rehabilitation and social fatigue, altered libido, blurred vision and other autonomic support systems, all of which may be effective in nervous system-related aspects. These features can make improving QOL for those patients [15]. it difficult for PD patients to perform routine activities of In this respect, PD older adult patients, like patients daily living (ADLs), such as dressing, bathing and with other chronic diseases, have to learn how to live with grooming; getting out of bed or arising from a seated and self-manage their symptoms and disease-related position; and walking or climbing stairs [9]. issues on a daily basis. Central to the ability of self- While physical symptoms are critical to the clinical managing their disease is having the confidence that they diagnosis, PD is not solely a motor control and movement have the knowledge, skills and ability, i.e., self-efficacy, to disorder. Dementia, depression and anxiety are common carry out the required behaviors and tasks to achieve the psychological syndromes reported [10]. Not only do older desired goals. Self-care is vital necessary for Parkinson adult patients with PD struggle with the physical and diseased older adults and involved the ability of psychological impairments of the disease, the dissociation individuals, families and communities to promote health, of emotional expressivity (expressive dysprosodia) and prevent disease and cope with illness and disability with facial expression has a profound effect on their social or without the support of a healthcare provider [16]. 57

3 Because in our Egyptian community, the concept of self-care management for PD is out the light of health care interest, patients suffer from more confusing everyday struggles, for which lacking essential knowledge and practice to effectively deal with. Significance of the Study: Self-care management through PD patient education should be directed toward avoiding or limiting functional disability, achieving a slower progress in this chronic disease that considered incurable and maintaining independent living for as long as possible. Extant research is limited regarding the role of patient education for disease self-management in Parkinson's disease and ultimately, the influence of such factors on patient's QOL and self-efficacy for managing the disease. Successful self-care will not occur unless the views, opinions, beliefs and attitudes of patients themselves are considered as key components of therapeutic encounters. To what extent the geriatric patients with PD could improve their well-being and resume their familiar lifestyle, becomes a critical issue. Improvement in quality of life and the ability to retain activities of daily living should therefore be the goals of outcome criteria for the gerontological nurses in clinical trial designs focused on the elderly with PD. So, there is a growing need to identify the effectiveness of patient education in enhancing PD geriatric patients' self-reported QOL and self-efficacy through self-management program. Aim of the Study: To determine the effect of self-care management program on the quality of life and selfefficacy of geriatric patients with Parkinson's disease. Research Hypotheses: Geriatric patients with Parkinson's disease who receive the proposed self-care strategies exhibit higher quality of life post the intervention than before. Geriatric patients with Parkinson's disease who receive the proposed self-care strategies exhibit improved self-efficacy post the intervention than before. MATERIALS AND METHODS Research Design: The study used a pretest-posttest and follow-up research design. Research Setting: This study was conducted in neuropsychiatric outpatient clinic of El-Hadara Orthopedic and Traumatology University Hospital. It is affiliated to Alexandria University and it was selected as one of the biggest university hospitals that provided best services for neurological and psychiatric diseases in Alexandria, Egypt. Additionally, it includes sections for orthopedic surgery and emergency operations, outpatient clinics and CT scan. The hospital power reached 449-bed. The neuropsychiatric outpatient clinic is specialized in manifestation of neuropsychiatric disorders which specify five days per week for providing medical services from Saturdays along Wednesdays. However, only Sundays are determined for treating and following PD patients whose number amounted to 31 patients (28 geriatric patients with different degrees of idiopathic PD 60 years and over only those with idiopathic PD which related to unknown etiology with certain degrees were selected according to inclusion criteria and 3 patients with other forms of Parkinsonism under 60 years old declined later) Subjects: A convenient sample of 22 geriatric patients (out of 28) of both sexes diagnosed with idiopathic parkinsonism (PD) attending the previous clinic for follow up of their therapeutic regimen with the following criteria, were eligible to participate and enrolled in the current study: Older adults 60 years and above (as Parkinsonism can affect people of different age due to known causes which differ from Parkinson's disease of unknown etiology). Had disease duration between 1-5 years. Because of their limited experience with the disease manifestations, geriatric people diagnosed with PD for less than one year were excluded from this study and those over 5 years will be also not included because of the progressive nature of the disease (get more worse) takes place over a period of 5 years, usually accompanied severe disabilities that obstruct patient abilities to follow self-care program instructions and being dependent on others to fulfill needs (according to specialist s recommendation of duration). Had no other chronic disabling illnesses or neurological disorders (i.e. CV Stroke), Participants with an illness in addition to PD, that impacted activities of daily living might have difficulty separating those experiences unique to PD. 58

4 Compliance with a stable dose of medications for at Tool III: The Modified Hoehn and Yahr Staging Scale: least a month. The original widely- used H & Y scale developed by Were able to ambulate independently, or with an Hoehn and Yahr [19] to describe the clinical progression assistive device. or the severity level of PD symptoms by observing the Score of 26 or greater in Mini-Mental State Exam patient in both standing and sitting position. (MMSE) (normal = 26 in PD) or with mild cognitive The scale was criticized as lacking sensitivity to impairment (18-25) measure the gradual deterioration of the PD patient s Were at a modified Hoehn and Yahr stages (an condition. Thus, a modified version was proposed and the assessment of disease severity) of 2, 2.5 and 3. Since, scale was further divided into eight stages, ranging from it was likely that those at a modified Hoehn and Yahr 0 to 5 ( Stage 0 = No signs of disease to Stage 5 = stage of 0 or 1 (unilateral disease) have not Wheelchair bound or bedridden unless aided ), with halfexperienced significant life-style changes, so only point gradations between stages 1 and 2 (1.5) and stages those at stage 2, 2.5 and 3 (starting from bilateral 2 and 3 (2.5). Then it had been added to the Unified disease without impairment of balance to mild to Parkinson s Disease Rating Scale (UPDRS). moderate bilateral disease; some postural instability; and physically independent) were included in this Tool IV: The Self-Efficacy for Managing Chronic study Disease 6-Item Scale: A short scale was developed by Lorig et al. [20] to measure the self-efficacy outcome in Tools: In order to fulfill the objective of the study, five Chronic Disease Self-Management Program. The scale tools were used covers several domains that are common across many chronic diseases, symptom control, role function, Tool I: PD Geriatric Patients Demographic and Health emotional functioning and communicating with Information Structured Interview Schedule: Developed physicians. by the researchers and completed by all participants The score for each item is the number circled. If two verbally prior to the initial interview. Data were collected consecutive numbers were circled, the lower number on age, gender, educational level, marital status, (less self-efficacy) is coded. If the numbers are not occupational background, socioeconomic status, & onset consecutive or more than two items were missing, score of PD diagnosis, other diagnoses and current of the item was omitted. The score for the scale is the medications, use of assistive devices, participation in mean of the six items and higher number indicates higher medical insurance system and patient s rate of health. self-efficacy. Tool II: Mini-Mental State Examination (MMSE): The MMSE is an effective screening tool that used to systematically and thoroughly assess mental status of community dwelled older adults. It is a 30-question measure that developed by Folstein et al. [17], translated into Arabic language by Elokl [18] and approved to be valid and reliable (r= 0.93). It tested ten areas of cognitive function: memory, orientation to time and place, attention, calculation, naming, repetition, registration, language, praxis and copying of a design. The MMSE has two sections. The first section has a maximum score of 21 and focuses on attention, memory and orientation and requires vocal participation from the patient. The second section has a maximum score of 9 and focuses on the patient s ability to both name and follow written and verbal instructions. The maximum score is 30. For PD, a score of 26 or higher is an indicative of cognitive intact functions, while that ranged from indicates mild cognitive dysfunction. Tool V: The 39- item Parkinson s disease Questionnaire (The PDQ-39): The PDQ is a set of 39 self-administered, PD- specific multi-dimensional quality of life questions with eight discrete domains. It was developed by Peto et al. [21] and designed to measure key QOL areas that had been adversely affected by PD during the preceding month. The eight dimensions are: (a) mobility (10 items, negotiated mobility problems such as difficulty doing the leisure activities or walking 100 yards) (b) activities of daily living (6 items, represented a variety of ADL limitations such as cutting food or dressing self) (c) emotional well-being (6 items, declared enormous emotional disturbances such as being depressed or worried about the future), (d) stigma (4 items, pointed out the social difficulties affected the lives of PD patients such as avoid eating or drinking in public), (e) social support (3 items, discussed the level of support PD patients perceived from daily social interactions and 59

5 relations such as problems concerning lack of support juries of (5) experts in the field. Their suggestions from family or close friends), (f) cognitions (4 items, and recommendations were taken into consideration. involved problems in the cognitive areas such as memory Cronbach s coefficient alpha test was used to and concentrations), (g) communication (3 items, ascertain the reliability of tools. Test indicated that addressed the communication inappropriateness such as tool III, IV and V were 85.4% reliable, 76.8% reliable speech difficulties impaired communication with others) and 91.3% reliable respectively. PD quality of life and (h) bodily discomfort (3 items, described different domains ranged from to in reliability test). bodily undesirable feelings such as pains, cramps and Pilot study was carried out on 4 older adults with PD aches). not included in the study, selected from geriatric Respondents are requested to affirm one of 5-point medicine unit at Alexandria Main University Hospital ordinal response scoring system: 0 = never had this during their follow up appointments in order to problem, 1 = occasionally, 2 = sometimes, 3 = often, 4 = ascertain the relevance, clarity and applicability of always have this problem (Likert scale) according to the the tools, test wording of the questions and estimate frequency of patients experience difficulties across the the time required for the interview. Based on the eight subscales items which reflect the impact of the obtained results, the necessary modifications were disease on patients health status, functioning and done. wellbeing. Each dimension total score range from 0 (never have difficulty) to 100 (always have difficulty). Lower Development of the Self-Care Management Program: scores reflect better QOL. Dimension score equals sum of scores of each item in the dimension divided by the Self-care skills and strategies were developed by the maximum possible score of all the items in the dimension, researchers after reviewing the most recent related multiplied by 100. literature. Self-management skills for PD comprised Total Score equals sum of scores for questions 1-39 areas related to a variety of professional domains, divided by four, multiplied by 39 and then multiplied by including importance of self- management program 100. and basic information about PD, skills for managing one s medications; diet and physical exercise, Study Method: functional activities and home /environmental modifications; managing non motor behavior, An official letter was forwarded to the hospital s memory problems, eating and swallowing difficulties, administrator to obtain the permission to attend the eye and sleep disorders, pain and motor fluctuations, clinic. Then after, the study purpose was explained to skin and foot care, bladder and bowel function, fall both the hospital s administrator, the head of the prevention, dealing with anxiety and depression, clinic and nursing staff as well and a written speech intelligibility, social communication; and permission was obtained in order to gain their identification and access of appropriate social support and cooperation during the application of support systems. the study interventions. For proper conduction of this study, three phases Primary Assessment Outcome and Fieldwork: were implemented; assessment or preparation phase, program conduction phase and evaluation (follow Each interview took approximately minutes, up) phase. depending on the participant's comfort level and will take place in the waiting area of the clinic using tools Phase One: Assessment or Preparation Phase : from I to V. The preferred method used of Development of Tools: interviewing is one-on-one in the presence or absence of family members or caregivers. A caregiver Tool I was developed by the researchers based on may be defined as any person with the exception of recent relevant literature to assess demographic and medical care providers (i.e., significant other, family health information of the Parkinsonian patients. The and sitter) providing care to the person with PD. Arabic version of tool II was used in this study. Collection of initial data covered a period of two Tools from III to V were translated into Arabic months and half, from the beginning of June 2011 till language by the researchers and were validated by the mid of August

6 Phase Two: Program Conduction Phase : The total period of data collection, including the three phases covered a period of 17 months and a Before the conduction of the educational and skills- half, from the beginning of June 2011 till the mid of related sessions and after the first joint clinic visit; January Then, the difference between preresearchers informed participants of any potential intervention and post-intervention scores was benefits that they may experience by being in the determined through using the proper statistical study which included (a) increased knowledge of and analysis. self-confidence (self-efficacy) regarding management of PD care and other health issues, (b) increased Ethical Consideration: Ethical consideration was applied problem-solving skills to deal with health-related through participants' informed written consent to issues, (c) opportunities for increased social participate in the study. The participants rights were interaction, (d) and increased QOL. protected by explaining the purpose and significance of The program conducted on group bases of 4 groups the study. Participants were reassured that their in total (2 groups with 6 elders each and two 5- elder responses will be kept anonymous and no remarks will be groups), minutes session/week on Sundays made to identify the patients' identity. The patient was (the only day determined for PD patients for informed that participation in the study is voluntary and receiving care and follow up, taken into consideration can withdraw at any time and that withdrawal will not that patient went to the clinic once per month), affect the level of services and care provided. preceding by quarter an hour summary of important previous learnt knowledge/skills and answering Statistical Analysis: The collected data were coded and related questions. analyzed using PC with SPSS version 20 and tabulated Teaching methods included lectures, group frequency and percentage were calculated. Descriptive discussion, role-playing, brainstorming, statistics as frequency, distribution, mean and standard demonstration and re- demonstration, models, deviation were used to describe different characteristics. pictures, real life demonstration, problem solving and The Chi-square test and Monte Carlo test were used mastery experience (i.e. trying out the skills for testing relationship between categorical variables. introduced on the self- care program). Univariate analyses, including: t-test was used to test the The total number of sessions was 56 sessions, 14 significance of results of quantitative variables and to sessions per each group (one discussed topic every compare the means between two unrelated groups on the meeting with a break period of 30 minutes providing same continuous, dependent variable. snacks and exercises practice from the second week The one-way analysis of variance (ANOVA) is used along with all sessions). This phase covered a period to determine whether there are any statistically significant from the mid of August 2011 till the mid of October differences between the means of two or more independent groups (F Test). The level of significance Handouts to improve learning and action plan selected for this study was p value equal to or less than calendar were prepared and given to each participant to identify obstacles hinder the achievement of needed goals. RESULTS Phase Three: Evaluation/Follow up Phase : Table (1) illustrates that the age of the study subjects ranged from 60 to 77 years with a mean of 63.8±4.7 years. Post the implementation of the self-management Those in the age group of 60 years to less than 65 years program, reassessment of the quality of life domains constituted more than one half of all studied PD older and self-efficacy of the participants were done by the adults (59.1%). More than three quarters (77.3%) of them researchers two times; once directly after the were males, while being married (91.0%) and illiterate conduction of self-care strategies and at the sixth (54.6%) characterized the social and educational week of the program implementation. The second background of the study sample. assessment outcomes was determined during 3 Table (2) shows that 50.0% of the study subjects had months evaluation from the mid of October 2012 to health problems other than Parkinson's disease. Around the mid of January three quarters (72.3%) of them had disorders related to 61

7 Table 1: Description of the studied subjects according to their socio-demographic information The studied subjects (no. = 22) Socio-demographic information Number % Age (in years) 60 years years years Min-Max Mean ± SD 4.7± 63.8 Sex Male Female Marital status Married Divorced Single Educational level Illiterate Primary education Preparatory education Secondary education University education Fig. 1: Distribution of the study subjects according to self-evaluation for their health condition cardiovascular system such as hypertension, ischemic were the most common drugs consumed without heart diseases and heart failure. Diabetes mellitus and a prescription (90.0% and 80.0% respectively) among history of previous fall were reported with an equal 45.5% of the subjects who consumed over the percent (36.4%). While, 18.2% suffered from counter (OTC) medications. 54.5% of PD elderly psychological problems. The same table revealed also patients used assistive devices; including eye glasses that more than two thirds (68.2%) reported sensory (83.3%) followed by canes for mobility (50.0%) and problems in the form of visual problems (66.7%), pain hearing aids (8.3%). Further, the vast majority (90.9%) of (40.0%) and smell problems (13.3%). In addition to the the study subjects had no health insurance or enough dopaminergic agents, more than one half (54.5%) of the income for follow up their current diagnosis (Parkinson's elderly with PD consumed prescribed medications for disease). different disorders. Cardiovascular drugs are the most Figure (1) reflects that more than one half (59.0%) of common consumed drugs 58.3%, followed by the study subjects evaluated their health condition as hypoglycemic agents 33.3%. Analgesics and laxatives moderate in wellness. 62

8 Table 2: Description of the studied subjects according to their clinical data The study subjects (no. =22) Health status Number % A. Health problems other than Parkinson's disease Yes Disorders related to: # Cardiovascular system Endocrinal system Previous fall Psychological problems Gastrointestinal system Respiratory system No B. Sensory-perceptual problems: Yes Type of sensory- perceptual problems: # Visual problems Sensation problems (pain) Smell problems No C. Current prescribed medication consumed Yes Types of medication: # Cardiovascular medication Diabetes medication Eye drops Anxiolytics Gastrointestinal medication Respiratory medication Sleep enhancer Antiepileptic No D. Over the counter medication consumed Yes Types of medication: # Analgesics Laxatives Antacids No E. Assistive devices used Yes Types of assistive devices: # Eye glasses Cane Hearing aids No F. Have health insurance No Yes G. Enough income for follow up No Yes #=more than one response was given 63

9 Table 3: The effect of self-care management program on the quality of life of geriatric patients with Parkinson's disease Elders' Mean Scores Elders' Mean Scores Elders' Mean Scores Pre-program Immediate Post-program 6 weeks Post-program Test of significance (ANOVA Test) Total percent score** Total percent score** Total percent score** PDQ_39_SI sub items Mean ± SD Mean ± SD Mean ± SD P1 P2 Mobility 71.25± ± ±16.1 F:2.706 F:6.101 P:0.064 P:0.004* Activity of daily livings (ADLs) 59.8± ± ±14.8 F:6.923 F:3.918 P:0.001* P:0.015* Emotional wellbeing 59. 3± ± ±17.3 F:0.864 F:1.116 P:0.595 P:0.435 Stigma 58.5± ± ±14.0 F:3.001 F:4.455 P:0.040* P:0.009* Social support 59.4± ± ±18.5 F:1.942 F:2.027 P:0.138 P:0.123 Cognition 60.5± ± ±15.1 F:6.787 F:3.565 P:0.001* P:0.021* Communication 59.4± ± ±14.8 F:1.872 F:2.816 P:0.151 P:0.047* Bodily discomfort 69.7± ± ±14.6 F:0.909 F:1.503 P:0.527 P:0.244 PDQ_39_SI TOTAL Score 63.3± ± ±11.8 F: F:3.584 P:0.003* P:0.062 F: ANOVA test P: p value of ANOVA test Significant P =0.05 P ** Lower score reflects better QOL P1: Stands for adjusted Bonferroni p-value for ANOVA with repeated measures for comparison between pre with immediate post-program P2: Stands for adjusted Bonferroni p-value for ANOVA with repeated measures for comparison between pre with 6 weeks post-program Table (3) illustrates that there was an observed (50.5±14.7) in comparison to its level before (71.25±14.6) improvement in overall score of quality of life of geriatric which proved to be insignificant (F= 2.706, P= 0.064). patient with Parkinson's disease immediately after the Fortunately, the mobility is still slightly improved after six application of self-care management program and the weeks (57.9 ±16.1) if compared to its level prior the difference is statistically significant (F= , P=0.003*). program (71.25±14.6) with a statistically significant After six weeks duration from the end of the program, the difference (F= 6.101, P= 0.004*). In addition, bodily quality of life was still improved (51.2±11.8) in comparison discomfort domain was improved immediately after the to its level prior the application of the program (63.3±11.2) program and after six weeks (43.9±8.5, 57.1±14.6 with no statistically significant difference (F=3.584, respectively) and the difference was not statistically P= 0.062). Generally, after six weeks, all domains of quality significant (F= 0.909, P= 0.527, F= 1.503, P=0.244 of life were slightly returned back in comparison to its respectively). Furthermore, Activity of daily livings of level immediately after the application of the program. geriatric patients with Parkinson's disease was Immediately after the application of self-care significantly improved immediately after the program and management program, the highest level of quality of life after six weeks (44.9±15.7, 49.6±14.8 respectively) in was reported in cognition which significantly improved comparison to its level before it (59.8±14.8) with (38.3±11.2) in comparison to its level prior the application statistically significant difference (F= 6.923, P= 0.001*, of the program (60.5±16.2) and the difference was F= 3.918, P=0.015* respectively). statistically significant (F= 6.787, P= 0.001*). Moreover, The program elevated the social support domain of after six weeks, the cognition was still better (43.4±15.1) QOL immediately after its application and then next the six in comparison to its level before the application of weeks period (44.3±16.5, 51.8±18.5 respectively) in the program with a statistically significant difference comparison to its level before it (59.4±24.5) with no (F= 3.565, P= 0.021*). statistically significant difference (F= 1.942, P= 0.138, On the other hand, as the physical function was the F= 2.027, P=0.123 respectively). Communication most deteriorated aspect of QOl; the mobility was slightly domain experienced nearly the same level of improved immediately after the application of the program enhancement immediately after the program (44.6±11.9) 64

10 Table 4: The effect of self-care management program on Self-efficacy of geriatric patients with Parkinson's disease Mean ± SD Scores ** Test of significance (ANOVA Test) Item Total allowed score Pre-program Immediate Post-program 6 weeks Post-program P1 P2 Self-efficacy ± ± ±5.7 F: F: P:.038* P:0.135 F: ANOVA test P: p value of ANOVA test *Significant p=0.05 **Higher number indicates higher self-efficacy P1: Stands for adjusted Bonferroni p-value for ANOVA with repeated measures for comparison between pre with immediate post-program P2: Stands for adjusted Bonferroni p-value for ANOVA with repeated measures for comparison between pre with six weeks post-program Table 5: Correlation between self-efficacy and quality of life of the study subjects pre the application, immediately after the application of self-care management program and six weeks post program Self-efficacy Pre-program Immediate post-program Six weeks post-program DQ_39_SI sub items 2 X MCp 2 X MCp 2 X Mcp Mobility * * * ADLs * * * Emotional wellbeing * * Stigma * * Social support * Cognition * * * Communication * * * Bodily discomfort PDQ_39_SI TOTAL Score * ?0.001* * 2 MC X : Chi-square test p: Monte Carlo P value *Significant P 0.05 but the difference didn't reached to significant level application of the program (21.2±7.2) but the difference (F= 1.872, P=0.151). After the sixth-week duration, it still didn't reach to the significance level (F=2.102, P= 0.135). improved if compared to its level prior the program Table (5) reflects that there was an observed application (59.4±19.2) and the difference became significant correlation between self-efficacy of the study statistically significant (F= 2.816, P= 0.047*). subjects and their quality of life immediately after the Before the application of the program, feeling application of self-care management program. This was in stigmatized among geriatric patients with Parkinson's relation to mobility, activities of daily livings, emotional disease was (58.5±15.5) which significantly improved well-being, stigma, cognition and communication; the chi immediately after the program and after six weeks square was ( , , , , , (40.9±13.2, 45.4±14.0 respectively) as well as proved to be respectively) and P value was (<0.001*, <0.001*, 0.015*, significant (F= 3.001, P= 0.040*, F= 4.455, P=0.009* 0.048*, 0.046*, respectively). respectively). This is followed by emotional well-being; The table also portrayed that there was a significant which improved immediately after the program and after correlation between self-efficacy of the study subjects the period of six weeks follow up (40.3±14.5, 48.1±17.3 and their quality of life after six weeks from the end of the respectively) if compared to its level before (59.3±17.6) program. This was regarding mobility, activities of daily with no statistically significant difference (F= 0.864, livings, emotional well-being, social support, cognition P= 0.595, F= 1.116, P=0.435 respectively). and communication; the chi square was ( , , Table (4) reveals that there was an observed , , , respectively) and P value improvement in self-efficacy of geriatric patient with was (0.001*, 0.001*, 0.011*, 0.042*, 0.13*, 0.007* Parkinson's disease along all levels of the program respectively). evaluation. Immediately after the application, high level of On the other hand, it was observed that there was no self-efficacy was reported (30.6±5.7) in comparison to its significant correlation founded between self-efficacy of level pre- the application (21.2±7.2) with a statistical the study subjects and their bodily discomfort either significant difference (F= 3.376, P=0.038*). Moreover, six immediately after the application of the program or six weeks post program, self-efficacy of the study subjects 2 weeks post program; (X = , respectively), (P= (29.1±5.7) was still higher than its level prior the , respectively). 65

11 DISCUSSION over two times greater in PD patients who also had 1.3 times more outpatient visits than their non -PD The current trends in the health care arena behoove counterparts [26]. PD patients had higher levels of costly self-care management to take a more proactive role in comorbidities. 50% of them as revealed in this study preservation of function and quality of life (QOL), health reported health disorders with the greatest prevalence promotion, complications prevention and rehabilitation; of cardiovascular problems and diabetes mellitus. areas ultimately critical in illnesses of late life onset and This finding is congruent with result of previous study extended years of disability. One such illness, Parkinson s which stated that these diseases in addition to disease (PD), has been associated with decreased quality depression, falls and dementia were determinants of of life, reduction of functional capacity, depression and higher medical costs among PD beneficiaries. difficulty in communication, deprived recreation and To the best of our knowledge, the present study is restrictions in intimate and social life. PD touches all the first in Egypt to directly focus on a relationship aspects of a person s life and certainly can have a between QOL and self-efficacy in PD and to develop a negative impact on the person s QOL. Consequently, it is comprehensive educational Arabic-version material worthwhile to investigate QOL issues related to PD and teaching the concept of self-care to those patients and apply a multidimensional approach to disease later determining the effect self-care interventions posed management which addresses all aspects of the disease on inducing their self-confidence and impacted on process to promote QOL of patients involved with this different domains of their lives. The educational material chronic disease [22]. covered: all physical difficulties PD patients faced and its Results of the present study revealed that the related self-care interventions and coping strategies; percentage of geriatric patients with PD was more in the psychological and cognitive complaints and age group 60 years to less than 65 years than those who demonstrated self-care measures; and other social and are in the other two age groups. This result doesn t recreational withdrawal activities; for its; appropriate contradict literatures that PD increased in incidence with actions would be taken according to the patient individual advanced age; but the fact that as motor impairment differences in capabilities level. The educational material intensify, patients display increasing dependence on gave a solution for every smallest common bothersome others for most aspects of basic self-care with increased problem by simply identifying the suffering, probable age category, which enforced family members came to the causes, specific problem-solving skills and appropriate clinic to receive routinely prescribed treatment instead of self-taking measures. patient who just came to the clinic in case of severely The hallmarked finding of the current study indicated disrupted new evident. In respect to sex, the present that there is an observed and a significant progress in study revealed that PD is reported by more males than allover domains of the quality of life of Parkinson sfemales. Literature explained this phenomenon; where diseased older adults directly after the implementation of smoking, as a risk behavior for the disease, is more among the proposed self-care management strategies. A possible males. Men had been more directly exposed than women explanation is that; this type of management succeeded in to toxicant exposure in agriculture and head trauma; in providing a holistic approach of care which first reflected addition to the neuroprotection role of estrogen for on self-efficacy and later on QOL. Although it may seem dopamine activity, or female gonadal factors that provide paradoxical, the current study also exhibited a significant resilience to dopamine loss [23-25]. relation between those concepts where higher perception PD exists a significant economic burden on PD of QOL was linked with greater trust in self to manage patients and their families. In the present study, most of arrays of PD symptoms. PD geriatric patients (90.9%) complained of the absence Indeed, perceived mastery and maintaining personal of supported health insurance system for them and their control found to override all other factors, including the income wasn t sufficient to follow their conditions with impact of physical disability, in predicting PD patients private doctors or in specialized hospitals in addition to quality of life. In addition, the skills learnt through our the high expenses of medication which are the main program acted synergistically to alter attitudes toward causes of the monthly visits of the outpatient s clinics. the disease as can t be managed. Furthermore, the Similar supporting studies for this results indicated that prolonged period of interaction between the study the annual health expenditures, costs for prescription partners, the researcher and the environment within which medications and utilization of health care services were self-care principles accomplished, provided successful 66

12 experiences in managing the disease, making elders The third explanation claimed from the study done by persuaded to try new strategies within a supportive Martinez-Martin [26] that the non-motor features of PD and positive environment. Recently, the work of contribute to an ongoing deterioration of independence Miertová et al. [1], proved such associations and added in activities of daily living, overall functional status and that PD patient education through self-care program acted QOL. as a buffer against the disease dilemma. From this point, the role the exercise played in the Quality of life is a concept applying to the patient s significant improvement in these previously mentioned self-evaluation of the impact of his/her disease [27]. domains in the current research is profound with a A notable finding in this study was that 63.3% of the statistical significant difference. For sure, exercise either studied patients reported worsened QOL at the initial flexibility or strengthening is an important ingredient of evaluation. The mechanism proposed by the researchers self-care management, provided clear benefits for PD that the patients deal with a disease course that is neither patients as it improves the clinical efficacy of levodopa predictable nor limited to a decline in physical treatment and gait rhythmicity, maintains balance and functioning. Dealing with the unpredictability of the mobility, delays functional decline and slows the disease means that persons with PD should deal with the progression of the disease. The researcher in this study disease on daily basis, existing more emotional and implemented both types of training 3 times weekly for physical strains. A plethora of studies postulated many three consecutive months, which become the primary reasons for diminished quality of life in patients with PD, practice before application of any following session. Each including reduced mobility, falls, motor complications, session was initiated by practicing of 20 minutes-exercise affective disorders and sleep disorders [8, 28-30]. to relief rigidity and associated muscle tensions. The Although of its complexity, many of these aspects go patient compliance with a form of balance-induced unnoticed in routine clinical assessments, the results that exercise improves the gait abnormalities which could lead also assumed in the study of Soh et al. [31]. to fall, that reflect positively on the domains of mobility Chronic comorbidities eventually interfere with the and bodily discomfort with a great associated ability to conduct daily activities and PD patients thus enhancement. become increasingly dependent upon others, increase the It could be acceptable that the self-reported prone to further complications and prevalence of side improvement was decline in the follow up period due to effects from polypharmacy [27]. In the present study, lack of appropriate supervision and motivation which may cardiovascular drugs and hypoglycemic agents are the lead to non-compliance. A very recent study in Jordan most common consumed prescribed drugs besides (2014) recommended the importance of continuous antiparkinsonian agents. Analgesics and laxatives are the reinforcement for PD patients to change their perception most common over the counter drugs consumed by the toward exercising and improve their practices [32]. subjects without prescription for the believe of relieve Although motor impairments are the most prominent both motor (rigidity) and non-motor (pain and chronic feature of PD and surely affect their ability to carry out constipation) dysfunction commonly experienced by the daily tasks independently, the cognitive impairments patients. associated with PD are also likely to have a significant This is more explained by the current study results impact on independent functioning and performance on which reflected that mobility (71.25±14.6), body ADLs skills [33]. A significant finding of the present discomforts (69.7±18.10) and impaired daily activities study was that although PD patients with severe (59.8±14.8) are among the most impaired domains of QOL. cognitive disturbance were excluded, 60.5% of patients This is an expected result, as PD is basically diagnosed reported decline in cognition. with the associated features of impaired mobility The fact is that we can t separate one domain from originated from a neurological deficiency of regulated the other. In essence, because PD patients have a dopamine. As disease progresses, motor impairments perception in impairments in both ADL and motor intensify and patients display increasing dependence on domains, they have multiple potential contributions to physical assistance for most aspects of basic self-care, cognitive dysfunction; suggesting a complex relationship that is why 50.0% of currently studied PD patients used exists between cognitive, motor functioning and assistive mobility devices. Secondly, those patients performance on ADLs. Medication-induced cognitive and didn t follow any form of physical exercising besides the motor changes may not always occur in parallel. That is, age-related changes in mobility they are often exposed to. administration of levodopa can result in improvement in 67