Dependent and independent variable relationships
We observed that QOL scores of caregivers were statistically associated with family income, family APGAR score, CDI scores of caring patients, level of educations and BDI scores of caregivers (Table 3). Higher family income, improved family function and higher levels of education were associated with a higher QOL of caregivers. Depression in caregivers and patients less than 18 years of age were associated with a lower QOL of caregivers. However, duration of care giving, MBI scores of patients, BDI scores of patients, and caregiver age did not reveal significant correlations with QOL scores of caregivers.
Caregivers who were employed showed significantly higher levels of QOL than those who were not (P=0.009). However, caregivers' QOL compared according to patients' diagnoses, relationship to the patient, religious affiliation and the existence of patients' depression did not reveal significant differences (Table 4).
Linear regression analyses
In linear regression analyses (Table 5), the emotional and employment status of caregivers accounted for 15.6% of caregivers' QOL. BDI scores demonstrated a negative relationship with QOL scores. Higher BDI scores were associated with lower QOL scores, suggesting that severe depression was associated with lower QOL. Employment status was demonstrated by a positive relationship with QOL scores, indicating that employed caregivers had a higher QOL.
The QOL of primary caregivers of MD patients has received minimal attention although the psychological and physical importance of this work has been recognized.19-21 Caregivers can play a major role in improving or aggravating patients' QOL, which can affect the outcome or progress of patients' treatment. Therefore, in caring for patients one should consider caregivers' QOL for improving the QOL of both patients and caregivers.
In our literature search, few studies examining the QOL of caregivers of MD patients were found. However, possible factors of caregivers' QOL include the characteristics of the caregiver (e.g., age, marital status, mental health, education),22-24 characteristics of the patient (e.g., the degree of disability, mental health),22,25 social factors,22 economic levels,22,26 and cultural context.26 As we observed, caregivers' QOL was related to various factors including the characteristics of patients, such as emotion, as well as the characteristics of caregivers, such as emotion, level of education, social factor (employment status), economic level (family income), and family function. We need to understand not only the importance of each factor separately but also the relationships between the factors.
The QOL of caregivers showed no significant differences between the caregiver groups with regard to caring patients, DMD with rapider progression vs. non-DMD with slower progression. MBI scores of caring patients did not reveal significant correlations with QOL scores of caregivers. On the other hand, the emotional status of patients, particularly under 18 years of age, was related to caregivers' QOL. We were extremely interested in this result rather than MD patients' physical disabilities or progression rate of disease, emotional status of younger patients was related to caregivers' QOL. It can be assumed that patients under 18 years of age better express their emotions to their caregivers because they are underage and still supposed to belong to their parents or family. We may need to focus more of our attention on the psychology of younger patients with MD and their relationship with their parents.
Education levels and caregivers' QOL showed positive correlations. This makes sense as higher education levels can contribute to employment opportunities and higher family income. There were positive correlations between levels of education and family income. Employed caregivers had higher levels of education than unemployed caregivers did. In multiple regression analyses, the emotional and employment status of caregivers among various parameters were more accountable for their QOL. Therefore, we will focus on the factors related to the psychosocial status of caregivers.
As previously stated, social functions of caregivers can affect their subjective QOL1 and poor social functioning is a risk of an increased perceived care burden.5 We estimate that more than 90% of Korean MD patients live at home and are cared for by one of their family members. In turn, almost all Korean MD patients can affect the social lives of their caregivers. Social isolation may bring not only psychological stress from being separated from the community but also financial stress regarding family income, as more than half of caregivers had financial problems because of caring for the patients. The root causes of social isolation are inadequate policies and insufficient facilities to accommodate patients with MD. Therefore, improved integration of MD patients into society and recognition of them as individuals who should be cared by the community may help minimize the psychological impact and social isolation felt by caregivers.
Caregivers of patients with neuromuscular disease face challenges when dealing with the stress associated with the chronic disability of a family member and the prospect of a shortened lifespan with no hope of recovery; therefore, demonstrate signs of anxiety and depression.4,24 The present study found depression in two thirds of caregivers and 28.7% had moderate to severe depression. However, none of the caregivers with depression was receiving psychiatric treatment.
Traditions or cultural factors may negatively affect the caregivers' QOL. Koreans, although no accurate statistics exist, have a tendency to deny the existence of psychological problems and the belief that they need to be treated. Many caregivers answered that they regarded their depression as a natural result of circumstance and therefore incurable. This may indicate that there are many caregivers who live their lives with undetected or untreated depression.
Particular problems may arise due to the inherent nature of the child parent relationship. Many primary caregivers of the current study, especially mothers of patients who represented the majority of the caregivers, responded that they feel guilty about their children's condition because MD is a genetic disorder. This feeling of guilt may cause caregivers to feel more depressed and have a lower QOL. Perrin and colleagues27 report that the burden of care may fall disproportionately on mothers who care for children with health problems. Furthermore, many Koreans incorrectly believe that almost all genetic disorders come from the mother's side, which may increase feelings of guilt for mothers, reproach between family members, and negatively affect family function. We need to further investigate whether this misconception is general or confined only to patriarchal societies and to determine how this affects caregivers' QOL.
A research has shown that family function played a central role in both the physical and the psychological health of caregivers.28 Caregivers' QOL in our study had statistical correlations with family function. These findings suggest that the development of rehabilitation programs is necessary to support the well being of the families of MD patients. The rehabilitation team caring families of patients with long-term disabilities should develop interventions that nurture the family as a whole on the understanding cultural context.
For a practical example with the consideration of psychosocial condition of caregivers of MD patients and their family, as our centre does, each health care centre can hold regular gatherings for MD patients and their caregivers. The main purpose of these meetings is to encourage social activity and the exchange of information on MD. We hope that these activities help patients and caregivers free themselves from social isolation and obtain new information about MD. It may also help to announce MD widely, which is not well known compared with other chronic diseases. Increased awareness of MD to the public may help the community regard MD patients as individuals who should be cared for instead of being treated as pariahs and it will minimize the negative psychological and social stress on caregivers.
The present study has several limitations. First, the cross sectional nature of the data makes it impossible to draw causal conclusions. Second, there is the possibility of a selection bias as our centre is located in the capital city and most of the patients in the study are residents of this or satellite cities. The main reasons of refusal to participate in this study were worries about time consumption and exposure of privacy, such as economical status and scholarship level. Therefore, the respondents who were recruited from the centre and agreed to participate in the study limit the potential generalization of the findings. Another limitation of the study was that we could not administer routine psychological evaluations to exclude patients with cognitive impairment. The cognitive function of MD patients may affect their BDI or CDI scores and caregivers' expectations or responsibilities on their patients.
Despite the study's limitations, it is a relatively early one focusing on the QOL of primary caregivers of patients with MD. Additional research on more MD patients and primary caregivers is necessary to determine the generalizations of the findings. Further researches will help to understand the QOL of both MD patients and caregivers and related factors, and find practical solutions to address the issues at hand.
Our results suggested that the emotional and vocational status of primary caregivers of MD patients were strongly associated with their QOL. Therefore, rehabilitation teams should address not only the physical aspects of patients with MD but also the psychological and demographic factors of primary caregivers.
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Keywords:© 2010 Chinese Medical Association
caregiver; quality of life; muscular dystrophy