Characteristics of respondents
A total number of participants were N= 80 aged between 20 to above 60 years old. A descriptive model shows that the majority of participants were female n= 62/77.5% while male scored 22.5%. the majority of participants were young aged 20 to30 years old 55% with older aged between 51 to 60 years counting 2.5%. The majority were psychiatric nurses n=41counting 51% while social workers 2.5% and psychologists 10% were minority with bachelor’s degree n=47/58.8%. 11.3 with educational level less that Bachelors’ while those with PhD were 3.8% of total participants. Most of participants were experienced in mental health work in between 1 to 5 years 52.5% while those experience with more than 20 years were 6 counting 7.5%. the majority of participants were working in general hospital in psychiatry department n=60/ 75% with few 2.5% working in other none specified institution while 22.5% work in special psychiatric hospitals. And all respondents work for public or government institution n=80/ 100%. The majority could serve in both available departments of psychiatry inpatient and outpatient counting 46.3%. respondents were also in majority working in institutions located in city n=67/83.8% while 8.8% are in rural areas. In terms of numbers of patients served a day most of respondents serve between 1 to 10 patients n= 40/50% and 28.7% serve above 40 patients per day. The majority of respondents 78.8% again show that their institutions held regular activities with patients and caregivers. With 21.3% who proved that there is. No regular activity. 62.5% of respondents proved that they have ever recognize the presence of psychological problems in caregivers. While 37.5% have never recognized any psychological symptoms. The age(P>0.003), the number of patients received per day (P>0.006) negatively correlated caregivers psychological symptoms recognition by mental health workers. Details about demographic characteristics and mental health work is seen on table 1.
Table 1:Participant demographic and professional characteristics
Variable
|
Category
|
n/80
|
%
|
Gender
|
Male
|
18
|
22.5
|
|
Female
|
62
|
77.5
|
Age
|
20 -30 years old
|
44
|
55.5
|
|
31-40 years old
|
28
|
35
|
|
41-50 years old
|
6
|
7.7
|
|
51 -60 years old
|
2
|
2.5
|
|
|
|
|
Educational Level
|
Less than Bachelor’s
|
9
|
11.3
|
|
Bachelor’s
|
57
|
58.8
|
|
Masters
|
21
|
26.3
|
|
PhD Level
|
3
|
3.8
|
Work experience
|
1-5 years
|
42
|
52.5
|
|
6 -10 years
|
22
|
27.5
|
|
11-15 years
|
8
|
10.0
|
|
16-20 years
|
2
|
2.5
|
|
Above 20 years
|
6
|
7.5
|
Title or qualification
|
Psychiatrist MD
|
29
|
36.3
|
|
Psychiatric Nurse
|
41
|
51.2
|
|
Psychologist
|
8
|
10.0
|
|
Social worker
|
2
|
2.5
|
Institution working for
|
General hospital/psychiatry Department
|
60
|
75
|
|
Special psychiatric Hospital
|
18
|
22.5
|
|
Other institution
|
2
|
2.5
|
Frequent Department
|
Out Patient
|
4
|
5
|
|
In patient
|
35
|
43.8
|
|
Work in both department
|
37
|
46.3
|
|
Other
|
4
|
5
|
Location of institution
|
City Area
|
67
|
83.8
|
|
Rural Area
|
7
|
8.8
|
|
Town ship
|
6
|
7.7
|
Type of institution
|
Public
|
80
|
100
|
|
Private
|
0
|
0.0
|
Ever recognized a psychological problem in a caregiver
|
Yes
|
50
|
62.5
|
|
No
|
30
|
37.5
|
Whether institution has regular activities with patients and respective caregivers
|
Yes
|
63
|
78.8
|
|
No
|
17
|
21.3
|
Number of patients served per day
|
1-10 patients
|
40
|
50.0
|
|
11-20 patients
|
11
|
13.8
|
|
21-30 patients
|
2
|
2.5
|
|
31-40 patients
|
4
|
5.0
|
|
Above 40 patients
|
23
|
28.7
|
Identified themes
After analysis five main themes emerged from data, 1. Less knowledge of mental illness, 2. the high stigma in caring mental illness 3. High distress and burnout 4. Less social in addition to that four similar main suggestions were added with critical input.
Less knowledge of Mental Illness
The less knowledge of mental illness or mental illness was an issue of concern as frequently pointed out by most of mental health workers respondents. Most of them shown that the less knowledge of mental illness in caregivers and in the general community is a big matter as this one would play a great role on the rest of other challenges that are affecting caregivers of mental illness as well as patients. Mental illness could occur in families suddenly and none has never pretended that its quite an ordinary illness that would affect anyone anytime. In addition, the community perception of mental illness may affect patients and their respective caregivers. Thus, less awareness of mental illness was shown in the following category:
-Need of Mental health education
Most of respondents shown that there is a need of mental health education not only in caregivers of psychiatric patients but also for the general community. the respondents based on their experience have shown that despite the effort made by the Chinese government in healthcare and mental healthcare in particular, mental health education must be improved for the particular cause of preventing, management, and promotion of mental wellbeing in caregivers, patients and the community. Mental health education would not be implemented when the disease is present. It would be done even before its occurring in the family and the community the lack of the awareness play a great role in increasing the burden and sorts of stigma. A respondent said:
‘’The mental pressure and psychological pressure of caregivers are enormous. The community including families with mentally patients have too little knowledge and understanding of mental illness. It is necessary to strengthen the knowledge of health education so that more people can learn about mental illness and prevent it early.’’
High stigma in caring mental illness
The lack of knowledge which brings the stigma in caring mental illness was stated by most of participants, the stigma, that is expressed as feel of shame of caring for such a disease was recognized in most of respected caregivers. Well, in the same instances this issue has become commonly frequent. Caregivers manage to hide it. However, mental health professionals could recognize it even though they could take no further intervention the stigma may occur as one of other more psychosocial challenges that a single caregiver is experiencing. A respondent said:
Sometimes I used to listen and talk to caregivers, they have many challenges as resulted to their daily caregiving demand. They are stigmatized and they experience sorts of burden. Once a caregiver told me: “I am fragile and helpless. I don’t know how to help the patient. I am under great pressure. I am afraid that others will know that I have such a disease in my family. (a psychologist with 6-10 years of experience).
The stigma being frequent is commonly manageable especially if the disease is well explained to community and concerned caregiver. The respondents instated on mental health education in overcoming the stigma and related challenges one says:
“Caregivers provide important support for patients’ recovery from illness, and community residents’ attitudes towards patients with mental illness have an important impact on patients’ recovery. Caregiver are often stigmatized they lack knowledge on the illness that they are caring for. we need to introduce and strengthen mental disease education for community and caregivers as possible as we can”
Similarly, on mental education and stigma reduction, main respondents have proven that this issue need to be addressed and should be for urgent plan for authority policy makers. However others show that the good policies regarding mental health education has started and would need to be improved
Caregivers provide important support for patients’ recovery from illness, and community residents’ attitudes towards patients with mental illness have an important impact on patients’ recovery and caregivers psychological health I would suggest Provide more disease-related knowledge, provide more convenience in treatment of diseases, so that the society has a correct understanding of such patients, and provide more fair work opportunities and convenience in life ( a psychiatrist nurse with more than ten years of experience).
High Distress and burnout
The expressed distress and burnout as recognized by mental health workers was one of frequent reported in data of respondents. Measuring burden and burnout could be expressed in presenting more arguments that prove that the issue of burden and burnout is highly prevalent in caregivers of mental illness. Respondents have proven that having the burden and burnout is immediately associated with the patient’s illness and caregiving role and this affects the diseases' recovery and psychological health of caregiver. A participant said
“Caregivers find it difficult to accept the fact that the patient is sick, worry about the future, there should still be discrimination in the community at present, and look at it with colored glasses” ( Psychiatrist with 10-15 years of experience in mental health work) as similar to this statement other respondents have also shown the high burden and non-recognition of problem by caregivers the proposed solution to overcome it :
The caregiver’ role is very hard, but sometimes we recognize psychological symptoms among them and they denied it. There are still many stigmatized prejudices and discriminations against mental illness in the society. And we found this to increase distress, burnout and burden in caregivers we also recognize other causes of disease related distress. (psychiatric nurse of 1-5 years of experience).
Having the burden would be avoided when both the caregiver, patients and the general community have insight on mental illness therefore, by stating the distress burden and burnout respondents in most of cases have mentioned the matter of mental health awareness in the general community and the other concerned parties in particular. A respondent stated“ Caregivers generally have a relatively high burden of care, they also present other different psychological conditions and in sometimes the distress is expressed in difficult forms, we hope to succeed in managing this matter by increasing the mental health knowledge and maximize the support provided to caregivers and their families. now Chinese communities are actively spreading knowledge about mental illness among residents”
The need of social support
The lack of social support is one of the main issues raised by participants. The social support would be expressed by how the family caregivers are perceived in the community, how the community is trying to help patients and their caregivers to cope with the illness. Mental health workers could also play a role in providing the social support at their level. The lack of social support as shown by participants is associated with causing factors high burdens in caring for illness and difficult in disease recovery and rehabilitation
A participant said:
The caregivers are very important to the patient’s recovery, and play a very supportive role. The community’s understanding of mental illness is not comprehensive enough, and community rehabilitation is rarely carried out. This lack of integration affects the social support and could be associated to disease complication and effect on caregivers’ daily life. (a Psychiatrist PhD holder with 16-20 years of experience in mental health work.)
On the hand respondents mentioned the issue of social support as a call for assisting both the patient and caregivers, they have raised this matter based on their experience in mental health work within the community that they understand well. A participant said:
“The community should pay more attention to families with mental illness patients, pay more attention to the emotional state of family members and patients, and intervene in a timely manner. Not only patients, but family members also need it. our community should be taught that their support is with great importance when a neighbor is having a relative with mental illness.” ( a social worker with 6-10 years of experience in mental health work).
The frequent associated factors to challenges in caring Mental illness
In additional to themes that exposed problems of caregivers another issue of concern was studied in separate. Respondents were asked to point what they have recognized as dominant factors that would influence problems in caregivers as based on their experience in mental health work and the fact that they understand the Chinese culture. The more frequent challenges as pointed out by participants are issues related to family factors. Issues related to disease and patient themselves, and issues related to the community.
Issues of family and the patient.
Family factors are mostly economic and related issues. The family acceptance of the disease and how family cope with the disease. In this case most of respondents have pointed out economic issues within the family. The family’s spending, family incomes and the cost of illness. In most of cases mental ill patients become a burden especially when they could not work and some of caregivers may lose their previous employments for providing care to the patient. One participant said:
“the economic situation is a major problem that increase problems and burdens in caring mental ill patient we have many examples of families that faced these challenges. Spouse or one parent could lose their jobs or stop it for taking care of a relative, what can we say on the disease cost? When the disease takes long period, the situation in the family becomes worsen I recommend concern parties to think about this matter.” (a MD psychiatrist. PhD holder with more than 20 years of experience in mental health work)
In addition to the economic matter within the family, respondents have also shown that when there is mental illness in the family. Some families would end-up in poor family relation even family separation or divorce can occur and this increases the caregiving burden and related challenges. Another participant said:
“The family relations cause a big problem when caring mental illness some families couldn’t cope as the used in previous. We had cases of poor relation and those who have leave their families because of the illness. This comes especially with schizophrenia cases and other psychotic conditions.”(a psychiatrist nurse with 16-20 years of experience in mental health work).
A part from the family relation issues, the other issues that increases the problems among caregivers is the disease acceptance and coping strategies. It was seen that many caregivers would deny the disease and sometimes have problems in trusting the treatments provided by professionals this may manifest not only in caregivers but also patients when this becomes frequent caregivers become vulnerable multiple caregiving associated challenges. As most of respondents pointed out, the disease acceptance coping strategies poses an issue of concern when educating families with mental illness patients and patients themselves. one said:
The disease acceptance is one of the main issues that increases chance in fails of treatments and worsen the burden of caregivers. Some families cannot understand mental illness as it occurs suddenly and may take longer depends on case. They seek many unwanted treatments with no good results (A psychologist Masters holder with more than 5 years of experience in mental health).
Patients and other disease related factors
The issues associated to patients and the disease were explained in two main points: the patient’s behavior toward the his /her family her/him self and the community or the severity of symptoms. Secondly the illness course, relapse, frequency of hospital admission, and the patient compliance with treatment. According to most of participants the patient and disease related factors were associated to the challenges in caregiving. Each single issue in these stated would contribute in the increase and severity in problems faced by caregivers in some instances all many or most of the factors may be present to a patient and the caregiver will live a situation of dealing with the routinely frequent matters. An argument in these combined was shown by most participant. For instance, one said:
The medication compliance is a challenging situation for family caregivers. Some patients mostly resist in taking medication and other resist the proposed therapy, in cases that we have mostly known, family caregivers could not sleep, they always stay home for assisting the patient. We often receive night calls from caregivers. We always think how we may improve the assistance at caregivers’ level because we know caregivers of mental illness are suffering. (a MD psychiatrist, Masters holder with experience of 11-5 years in mental health work).
Other participants have mentioned the similar argument. The main raised issue has been seen in many other previous studies however this being said by professionals has been an added value to our current knowledge.
The severity of disease, the disease recurrence and family strategies to cope with the disease some of dominant issues in increasing burden in caregivers.