الفهرس 
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Abstract
Family psycho-education is an integral part of the psychiatric treatment programs; however, there is relatively little understanding of the family caregivers’ psycho-educational needs. When psycho-education is given based on determined family’s needs, the caregivers’ abilities to cope and solve problems will be fostered.
Determining these caregivers’ psycho-educational needs may be the first step to help psychiatric nurses develop psycho-educational programs to motivate the families of patients with psychotic disorders. As well, this will increase caregivers’ knowledge and skills in developing and maintaining successful management of their patients’ symptoms, and enhancing their effective coping methods. Consequently, their burden would be minimized.
The current study aimed to determine the psycho-educational needs and to assess the degree of caregiving burden among family caregivers of patients with psychotic disorders, as well as to investigate the relationship between these two variables.
This study followed a descriptive research design. It was conducted at the outpatient clinic of El-Maamoura Hospital for Psychiatric Medicine, in Alexandria.
The study subjects were composed of 150 family caregivers of out-patients with psychotic disorders.
The data for this study were obtained using the following tools:
Tool I: The Educational Needs Questionnaire (ENQ) which is a self-report questionnaire developed by Mueser et al. (1992) to assess the educational needs of family caregivers. It encompasses 45 items, classified into six domains.
Tool II: Caregiver Burden Inventory (CBI) which is a self-report instrument developed by Novak and Guest (1989) to explore the caregiver’s level of burden. It has 24 items classified into five dimensions.
Tool III: Patients and Family Caregivers Socio-Demographic and Clinical Data Interview Sheet.
• Arabic translation of the tools I and II (ENQ and CBI) was done.
• The translated tools were subjected to face validity by a jury of experts in the psychiatric nursing field and were accepted as valid.
• Based on a pilot study the scaling of tool I was reduced from five-point to three-point Likert scale and tool II from five-point to four-point Likert scale.
• Reliabilities of the translated tools (I and II) were tested using Cronbach’s Alpha test and both proved to reliable (0.82 each).
• Recruited subjects were then interviewed on an individual basis in the outpatient clinic to fill in the study tools.
• The collected data were then analyzed using the SPSS program, version 20.0.
The followings are the main results obtained by the present study:
I. Patients’ socio-demographic and clinical data:
- Patients’ age ranged between 19 and 59 years, with a mean age of 34.41±9.84 years, 78.7% were males, 66% were single and 14.7% were either divorced or widowers.
- Patients who were either illiterate or can just read and write constituted 41.3%, while only 6% had university level of education.
- Non-working patients constituted 72.7% and 56% had enough or more than enough income.
- The majority of patients (70%) were living in urban areas, and 82% were living with their nuclear family.
- Almost two thirds of patients (66.7%) had schizophrenia and the rest had mood disorders.
- Their duration of illness ranged between 1 and 38 years, (x̄=8.56 ± 6.10 years), with 48.7% having a duration between 6 and 15 years.
II. Caregivers’ socio-demographic, clinical and caring process data:
- Females constituted 61.3 % of the studied caregivers. Caregivers’ age ranged between 19 and 70 years (x̄=45.55 ± 12.44 years). Caregivers whose age ranged from 41 to 50 years constituted 31.3% of the total sample.
- Parents constituted 42.0% of caregivers, while 41.3% were siblings.
- Married caregivers constituted 62.7% of the subjects, while 20.0% were either divorced or widowers/widows.
- Almost 58.0% of caregivers were either illiterate or can just read and write, while 4.7% had basic level of education.
- Working subjects constituted 42.7% of caregivers, and 60.7% considered their income enough.
- Caregivers who had a family history of physical/mental illness constituted 24.7% of them, 83.8% had physical diseases and 16.2% had mental illness.
- Being the only caregiver constituted 44.7% of the subjects. The duration of caregiving ranged between 1 and 20 years (x̄=7.67 ± 4.96 years).
III. Caregivers’ psycho-educational needs results:
- As for the total score, psycho-educational needs were highly expressed by 64% of caregivers, while the rest of the subjects had moderate and low interest in the educational needs (35.3% and 0.7% respectively).
- As for the subdomains, “coping with stress” came in the top (x̄%=88.28±14.71), followed by “enhancing social functioning” (x̄%=75.22±22.41), “coping with patients’ symptoms” (x̄%=73.12±23.80), and “community resources” (x̄%=67.17±28.43).
- The highly top 10 ranked educational needs by caregivers were “ways of managing stress more effectively”, “strategies for solving problems”, “managing burn- out”, “recent research on mental illness”, “early warning signs of illness and relapse”, “coping with stigma of mental illness”, “getting what you need from the mental health system”, “anger, violence and assaultive behavior”, “biological theories”, and “setting limits on patient’s behavior”.
IV. Caregivers’ burden results:
- The majority of caregivers (93.3%) had a risk of burnout, with a mean percent of 60.15±14.41 on the total inventory score.
- As for the inventory subscales, the highly scored dimensions were “time-dependent burden” (x̄%=71.42±18.70), “emotional burden” (x̄%=60.31±21.51), “physical burden” (x̄%=51.89±22.91), followed by “social burden” (x̄%=46.98±21.16).
V. The correlation between the studied subjects’ educational needs and their caregiving burden:
- There were no statistically significant correlations between total and subscales of both caregivers’ educational needs and caregiving burden (p>0.05), except for a positive correlation between the educational needs regarding “basic facts about mental illness” and the caregivers’ “developmental burden” (r=0.161, p=0.049).
VI. The relationship between caregivers’ mean scores of educational needs and their socio-demographic, clinical and caring process characteristics:
- There were no statistically significant relationships between caregivers’ educational needs and most of their socio-demographic characteristics, namely their sex, kinship to the patient, educational level, and working status (p>0.05).
- Subject’s age was significantly related to both the caregivers’ educational needs of “basic facts about mental illness” as well as other “miscellaneous” needs. The younger the caregivers the more they expressed such needs (F=2.898, p=0.024, and F=3.637, p=0.007 respectively).
- Caregivers’ marital status was significantly related to the “total” expressed educational needs as well as to the subtotal domains of “basic facts about mental illness”, “coping with patient symptoms”, “enhancing social functioning”, and “community resources”. Those who were single or divorced were the ones who expressed higher level of the mentioned needs (F=4.766, p=0.003, F=3.87, p=0.011, F=5.534, p=0.001, F=5.550, p=0.001, and F=2.761, p=0.044 respectively).
- A statistically significant relationship was found between the “duration of caregiving” (being only carer) and the “total” mean score of educational need as well as “basic facts about mental illness” and “enhancing social functioning” (F=5.174, p=0.008, F=8.634, p<0.001, F=6.935, p=0.002 respectively). Subjects whose duration of caregiving was shorter tended to express higher needs than those who have been caring for longer periods.
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VII. The relationship between caregivers’ mean scores of caregiving burden subscales and their socio-demographic, clinical and caring process characteristics:
- There were statistically significant relationships between caregivers’ burden and all their socio-demographic characteristics, except the income.
- As for sex, a significant relationship is apparent in relation to “total” mean sore as well as the sub-total domains’ sores of “time-dependent burden”, “developmental burden”, “physical burden”, and “social burden” (F=4.873, p=<0.001, t=4.756, p=<0.001, t=2.813, p=0.006, t=4480, p=<0.001, and t=3.729, p=<0.001 respectively), where females tended always to score higher.
- Caregivers’ age and kinship to the patient were found to be significantly related to caregivers’ “physical burden”. Older caregivers and those who were patient’s mother/father, children or spouse tended to have more physical burden (F=4.256, p=0.003, and F=8.072, p<0.001 respectively).
- Caregivers’ marital status was significantly related to the “physical burden”, “social burden”, and “emotional burden”. Those who were divorced expressed always the highest levels of the mentioned burdens (F=2.816, p=0.041, F=2.777, p=0.043, and F=3.162, p=0.026 respectively).
- Caregivers’ educational level was significantly related to caregivers’ “time-dependent burden” and “physical burden”. Those with less education scored high on “time-dependent burden” (F=2.684, p=0.049), and “physical burden” (F=6.892, p<0.001).
- Caregivers’ working status was significantly related to the “total” mean score (F=3.404, p=0.019), “time-dependent burden” (F=3.934, p=0.010), “physical burden” (F=11.598, p<0.001), and “social burden” (F=4.518, P=0.005). Caregivers who were not working were the ones who suffer more burdens.
- A statistically significant relationship was found between the family history of having mental illness and the “total” mean score of caregiving burden (t=2.446, p=0.016), as well as “developmental burden” (t=1.634, p=0.0104), “physical burden” (t=2.787, p=0.006), and “social burden” (t=2.968, p=0.004). Subjects with family history of mental illness tended to suffer higher burden than those with no family history of mental illness.
- Caregiver who were suffering from mental and physical diseases tended significantly to suffer more physical burden (t=2.787, p=0.006) and social burden (t=2.968, p=0.004). It was also observed that caregivers’ mental illness is significantly related to “time-dependent burden” (t=2.148, p=0.039), “physical burden” (t=2.772, p=0.009), and “social burden” (t=2.325, p=0.026). Those having mental illness tended to score higher burden on the mentioned subscales.
- Being the only caregiver is significantly related to the “total” mean score of caregiving burden (t=3.541, p=0.001) and the subscales of “time-burden” (t=2.891, p=0.004), “developmental burden” (t=2.997, p=0.003), “physical burden” (t=3.889, p= 0.001), and “social burden” (t=2.412,p=0.017).
- The duration of caregiving was significantly related to the “total” mean score of caregiving burden (F=1.200, p=0.308) as well as to “time-dependent burden” (F=3.901, p=0.025), where caregivers whose duration of caregiving was shorter tended to suffer more burden.
It was concluded that caring for a patient with psychotic disorder within a family can put a great burden on who ever is providing the care to the extent of exposing them to the risk of burnout. This becomes more evident when the caregiver is the only one taking the responsibility for care, being a female, not working, divorced and/or having a family history of mental illness or being mentally ill him/herself.
In response, the need for psycho-education is expected and highly expressed by the caregivers especially in the areas of coping with stress, patient’s social functioning, patient’s symptoms and the resources available to help and support them.
The followings are the main recommendations suggested:
• Psychiatric nurses should incorporate a routine assessment of the caregivers’ psycho-educational needs and caregiving burden.
• Psycho-educational interventions should be offered based on the assessed caregivers’ needs.
• Designing family counseling programs for caregivers who are at risk for burnout, and those with a high degree of burden.
• Special attention should be given to those caregivers at risk (being the only carer, females, elder, who are parents, divorced, less educated, not working, having a family history of mental illness and/or being mentally ill themselves).
• Developing supervised self-help and family-to-family caregiver groups in which family caregivers are encouraged to share their feelings, and express their caregiving experiences.
• Workshops should be delivered to psychiatric nurses about the different caregivers’ psycho-educational needs and caregiving burden.
• Community mental health nurses should assess the family psycho-educational needs and their caregiving burden through regular home visits to provide appropriate family-based interventions.
• The Egyptian mental health system should provide a variety of resources to support and cover the needs of family caregivers.
• Further studies are needed to develop and evaluate the effectiveness of family-based interventions targeted at meeting the families’ psycho-educational needs and alleviation of their caregiving burden.
• Further research is required to investigate what factors might affect families’ psycho-educational needs and their level of caregiving burden.