cents and adults with diabetes found that better for distress, because diabetes-specific family con behaved in ways that supported the diabetes care …
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Diabetes Mellitus Patients Family Caregivers Subjective Quality of Life
Abdel W Awadalla, PhD; Jude U Ohaeri, MD, FRCPsych UK; Shafika A Al-Awadi, MRCP UK; and Adel M Tawfiq, MB, MSc Safat, Kuwait
Objectives: To assess the subjective quality of life QOL of family caregivers of Sudanese type-1 and type-2 diabetic outpatients, using the WHO 26-item QOL instrument, compared with a general population sample; and to examine the factors associated with caregiver QOL Method: Responses of caregivers of 105 outpatients with type-1 diabetes and 135 with type-2 diabetes were compared with 139 general population subjects Results: Caregivers were satisfied with the content of items related to general social supports Type-1 caregivers had significantly lower QOL scores than type-2 caregivers and the general population Parents and siblings had lowest scores compared with other family groups Caregivers scored higher than patients Patients age and duration of illness, and caregivers education, marital status and state of health were positively associated with caregiver QOL Caregivers QOL was predicted by their appraisal of patients QOL
Conclusions: Caregivers who were sick, younger, single, less educated and caring for patients with more recent illness appeared relatively vulnerable Clinicians should be interested in the dynamics of the family caregiving situation–as it impacts QOL–and in promoting caregiver awareness of diabetes in order to enhance the caregiving role, quality of care and QOL Key words: quality of life diabetes caregiver
INTRODUCTION
Diabetes mellitus is a chronic illness that requires significant behavior change in the family, because the demands of adhering to the patients healthcare regime are associated with psychosocial conflicts for the patient and the family environment1 In recognition of the fact that the family context can serve as a framework for the clinician to integrate all factors that affect disease management,2 questionnaires have been developed to assess diabetes-specific family behavior3-5 Studies of children, adolescents and adults with diabetes found that better illness adaptation and treatment adherence related to high family cohesion and low family conflict Hence, it has been reported that the self-management behavior of husbands often deteriorated when conflict
existed with their spouses,1 spouses belief in the importance of blood glucose control predicted such control better than the patients belief,6 and family caregivers appraisal of the care situation had significant impact on the patients quality of life QOL5 In addition, the family structure was observed to impact on clinical outcome, such that diabetic children from single-mother families were found to be at risk for poorer metabolic control7 Parental involvement in care may be fertile ground for distress, because diabetes-specific family conflict may detract from the childs general QOL if parents criticize the child around management tasks, such as blood glucose monitoring, coordination of meal planning and exercise8 When family members behaved in ways that supported the diabetes care regimen, the individual with diabetes was more satisfied with his or her adaptation to the illness and reported less interference in role function due to emotional problems4 Accordingly, it has been suggested that family members involved in these caregiving roles are at some risk for reduced physical and emotional well-being, and, hence, psychosocial interventions have been articulated to help them9
When diabetic complications set in, caregivers experience a reduction in social activities, increased famVOL 98, NO 5, MAY 2006 727
2006 From the Departments of Psychiatry Awadalla, assistant professor and Medicine Al-Awadi, assistant professor, Faculty of Medicine, Kuwait University, and Psychological Medicine Hospital Ohaeri, consultant psychiatrist; Tawfiq, psychiatrist, Safat, Kuwait Send correspondence and reprint requests for J Natl Med Assoc 2006;98:727736 to: Dr JU Ohaeri, Department of Psychiatry, Psychological Medicine Hospital, Gamal Abdul Naser Road, PO Box 4081, Safat, Kuwait 13041; phone/fax: 965-4899315; e-mail: judeohaeri@hotmailcom
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ily tensions and lost time from work, all of which have a negative impact on QOL10,11 A particular problem for family caregivers is the financial cost of diabetes, where a British study found that caregivers who lost earnings reported higher levels of strain, and only one-third of the caregivers received state benefits12 The problem is worse in developing countries13 Despite the impressive evidence of the impact of the caregiving situation on outcomes
in diabetes, family caregiver psychosocial issues have been mostly investigated from the perspectives of marital relationships, family problems and social support1,2,14 Family caregiver QOL is a neglected area of research,15 and there is paucity of information on how the caregivers appraisal of the patients QOL affects the QOL of the caregiver and that of the patient5,16 Assessment of caregiver QOL is one way of exploring the positive aspect of the caregiving role that has been widely noted in the caregiver burden literature17 In a Taiwanese study of 187 family caregivers of inpatients with diabetes or cerebrovascular accident, using a QOL measure–the Short Form 36 SF-36–it was reported that caregivers scored significantly lower than a general population sample on the primarily mental scales of the SF-36, and higher on the physical functioning and bodily pain scales, while caregiver and patient factors contributed to caregivers QOL15
In Sudan, a north-central African country, QOL issues in diabetes are of interest18 because of the noted high prevalence of the disease 104 age-adjusted in one rural community,19,20 the economic burden on families13 and the wide-ranging
complications21 The available Sudanese study on QOL in diabetes involved 89 adult type-2 patients It was found that their QOL was generally low and that the presence of complications was the most important predictor of QOL18 There are no reports of the QOL of family caregivers of diabetic patients from the Africa-Arab world The objectives of our study were: to assess the subjective QOL of family caregivers of community living Sudanese diabetic patients, using the WHO 26-item Quality of Life Instrument the WHOQOL-Bref; to assess the impact on caregivers domains of QOL, of caregivers sociodemographic variables, caregivers reported state of health, relationship to the patient, caregivers impression or appraisal of the patients subjective QOL; the patients demographic variables, type of diabetes, age at onset of illness, duration of illness, complications of the illness and treatment erectile dysfunction, lack of sexual desire, symptoms of hypoglycemia, and gastrointestinal symptoms We chose these complications of the illness because they are
Table 1 Comparison of sociodemographic characteristics of caregivers of diabetes subjects and general population group Diabetes Caregivers
Variables Gender Male Mean age SD Type 1 N105 42 40 364 113 Type 2 N135 52 382 358 117 Gen Popn N139 F or 2 DF P Sig Different Groups
331 82
38
2/376
0000
Education Illiterate/primary school 14 135 High school 50 481 College 40 385 Occupation Students Unemployed/low skill Medium/high skill Marital status Single Married Divorced/separated Carer currently ill Yes
Type I gen popn type 2
27 199 57 419 52 382
10 72 55 399 73 529
137
4
001
Gen popn type 1/type 2
13 125 76 731 15 144
16 120 92 692 25 188
41 295 59 424 39 281
317
4
0000
Gen popn type 1/type 2
37 352 60 571 8 76
59 434 71 522 6 44
92 667 37 268 9 65
299
4
0000
type 1/type 2 married gen popn
27 260
35 257
ns
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easy to assess in the clinical setting and have been commonly associated with QOL in the literature22,23 We shall thereby examine the correlation between the QOL of caregivers and patients, and determine the factors that can predict caregivers general subjective QOL; to compare the responses of the caregivers with those of a general population sample using the same
instrument Based on evidence from the literature and previous African experience,16,24 we hypothesized as follows: first, most caregivers would be satisfied with the content of items related to general social supports and personal relations but would not be satisfied with those related to the poor national economic indices eg, money, transport, access to health service Second, caregiver QOL domain scores would be positively associated with their demographic variables and state of health Similarly, caregivers of patients who had type-2 diabetes and were younger, married, educated and employed, and without complications and side effects of treatment would have higher QOL scores In addition, caregiverpatient domain scores would be significantly positively correlated Third, in regression analysis, a major positive predictor of caregiver subjective QOL would be caregivers impression or appraisal of the patients QOL16 Fourth, general population subjects would have significantly higher QOL domain scores than the caregivers5
responsible for helping the patient to adhere to treatment and running chores for the patient, especially if there were disabling complications The caregivers
participants were those accompanying consecutive diabetic patients, who fulfilled the studys inclusion criteria, to the outpatient medical clinics of various hospitals In order to have patients with sufficient experience of the illness and stable diagnosis of diabetes, we chose those who had been ill for at least one year, with a stable clinical and laboratory-based diagnosis of diabetes mellitus Family caregivers chosen were those who could independently complete the questionnaires in Arabic The patients and caregivers were recruited from the medical outpatient clinics of the four government hospitals in Greater Khartoum, three private medical clinics in Khartoum, the Wad Medani Teaching Hospital in Central Sudan and the Atbara Teaching Hospital in Northern Sudan For the comparison general population subjects, we recruited a community sample of natives living in the same locality as the patients, who had no evident chronic physical or mental illnesses and were not caring for ill relatives
MEASURES: THE WHOQOL-BREF
The WHOQOL-Bref is a 26-item self-administered generic questionnaire, being a short version of the WHOQOL-100 instrument, a Likert-type scale with five response options
per item25 This instrument emphasizes the subjective responses of patients rather than their objective life conditions, with assessment made over the preceding two weeks It was developed in a wide range of languages in different cultural settings and yields comparable scores across cultures25 It is made up of domains or dimensions and facets or subdomains Domains are broad groupings eg, physical/psychological health of related facets The items on overall rating of QOL OQOL and subjective satisfaction with health are not included in the domains but are used to constitute the general facet on OQOL and health There are two models of the WHOQOL-Bref The initial model of the WHOQOL-Bref was fashioned in line with the WHOQOL-100 to have six domains–namely, physical health, psychological health, level of independence, social relationships, environment and spiritual26 To derive the second four-domain model, the domain of level of independence was merged with that of physical health, while the one item constituting the spiritual domain was added to the psychological The analysis in this paper was based on the sixdomain model We also analyzed for each item
METHODS Operational
Definitions
We adopted the WHO definition of QOL as individuals perception of life in the context of their culture and value system in which they live and in relation to their goals, expectations, standards and concerns25 Our focus was on subjective QOL, as distinct from objective QOL24 In order to quantify satisfaction to test hypothesis 1, we defined participants satisfaction with the contents of the items of the questionnaire as their level of positive appreciation24 In the WHOQOL-Bref, each item is rated on a fivepoint scale of very dissatisfied to highly satisfied In other words, we quantified group satisfaction by the proportion of participants who positively appreciated the content of the item within the group ie, satisfied/highly satisfied Hence, we had dissatisfaction ie, 50 of respondents positively appreciated it, bare satisfaction 5065, moderate satisfaction 6674 and highest satisfaction 7524
Participants and Setting
A family caregiver was defined as one who lived in daily contact with the patient and was mostly
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Modification of the WHOQOL-Bref for the
Caregivers Appraisal of Patients QOL
In order to produce the version of the WHOQOLBref with which the family caregivers rated their impression or appraisal of the patients QOL, we used the method of Sainfort et al,27 by giving a new direction to each item, so that the caregiver could rate the patient as an observer In other words, we assessed the type of discordance that occurs when both parties are judging the same item but disagree about the rating This allowed direct comparison of caregiver and patient judgments The modification of the WHOQOL-Bref was thus minimal The following examples illustrate the modifications: Original: How would you rate your quality of life? Caregiver modification: How would you rate the QOL of your relative? Original: How satisfied are you with your health? Caregiver modification: How satisfied are you with the health of your relative? The internal consistency of the WHOQOL-Bref,
as assessed by Cronbachs alpha coefficient for the responses of all subjects, was high for the caregivers 093, the caregivers impressions 092 and the general population group 087
The Clinicians Recording Sheet
The physician in charge of the case assisted the research
assistant in recording the patients type of diabetes, age at onset of illness, duration of illness, presence of erectile dysfunction for males, diminished sexual desire, symptoms of hypoglycemia and gastrointestinal GI symptoms22,23 These judgments were made by the doctor on direct clinical interview of the patient
Data Collection Procedure
The questionnaires were translated into simple Arabic by the method of back-translation Permission to carry out the study was obtained from the authorities of each hospital The patients and their family caregivers gave consent to participate after the objectives of the study were explained to them We pretested the questionnaires on a sample of 12 educated patients and their family caregivers, and submitted the questionnaires to four senior health
Table 2 Comparative level of caregiver group satisfaction with QOL items Highest Satisfaction Moderate Satisfaction Bare Satisfaction Dissatisfied 75 Subjects 6674 Subjects 5065 Subjects 50 Subjects A Type-1 Diabetes Caregivers N105 Life meaningful 680; Overall QOL, health Money, transport, satisfaction, safety feeling, information, health physical environmental service, medical health, energy for
life, treatment, leisure bodily appearance, opportunity, etc ability to get around, sleep, ADL, work capacity, self-satisfaction, personal relations, friends support, living place satisfaction B Type-2 Diabetes Caregivers N135 Life meaningful 748, Enjoy life 604, concentration overall QOL 711, 639, physical environmental safety feeling, living health 570, sex life, 549, place 662, energy 699, medical treatment 525 bodily appearance 704, sleep 709, ADL 713, work capacity 676 C General Population Group N139 Enjoy life 674, OQL 633, safety 626, environlife meaningful 728, mental health 511, ADL 611, concentration 719, work capacity 626, sex energy 717, sleep 698, satisfaction 527, friends support personal relations 719 547,living place satisfaction 655 need for medical treatment 642, freedom from physical pain 551
Personal relations, 754, health satisfaction 801, ability to get around 801 self-satisfaction 759
Money, transport, information, health service, etc
Health satisfaction 750, bodily appearance 849 ability to get around 835 self-satisfaction 766
Money 151, information, 359, leisure activities 216 access to health service 187, transport 252, negative feeling 213
730
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workers for critical comments In this pilot exercise, the instrument was judged to be easily understood by and acceptable to people in this cultural setting Nine field research assistants eight females were recruited and trained by one of the authors on the use of the questionnaires They were healthcare staff with at least a bachelors degree in psychology or social work who were familiar with the circumstances of the patients The project commenced when we were satisfied that the research assistants had become confident in the use of the questionnaires No formal interrater reliability tests were done because the WHOQOL-Bref is a self-rated instrument Patients and caregivers completed the questionnaire without interference from staff, after clarification of the objectives of the study and the meaning of the items Illiterate patients were assisted by their educated relatives to complete the questionnaire However, such relatives were requested to complete their own questionnaires before assisting the patient All questionnaires were completed privately Literacy in the Arabic
language is very high in Sudan, especially as it is the language of the Holy Koran Where there was more than one family caregiver accompanying the patient to the clinic, the one chosen to participate in the study was the member who spent the greatest amount of time with the patient As is usual in our culture for such noninvasive studies, all those who fulfilled the studys inclusion criteria freely agreed to participate when the objectives were explained to them
Data Analysis
Data were analyzed by SPSS version 12 Responses were examined from the perspective of level of satisfaction with the contents of the items, using the operational definitions earlier described Summary scores were generated by organizing the items into the six and four domains as recommended by the WHOQOL study group One-way analysis of variance ANOVA, with Tukeys method of multiple comparison, was used to compare caregiver mean differences in QOL domain scores with the general population group ie, type-1/type-2/ general population In view of the significant differences in sociodemographic characteristics, between the caregivers and the general population group as well as the significant association between
caregiver demographic variables and their QOL, analysis of covariance ANCOVA was used to control for the impact of these variables on group differences in QOL The covariates were gender, level of education, occupation, marital status and age For the impact of complications of patients disease and side effects of treatment on caregiver QOL, we analyzed for differences in caregiver QOL domain scores for
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patients who admitted having symptoms of hypoglycemia, erectile dysfunction, loss of sexual desire and GI symptoms22,23 We did two types of regression analysis for the following reasons First, since most of the variables were categorical, a logistic regression was required in order to include all relevant independent variables Hence, we assessed the significant predictors of caregivers QOL in logistic regression for categorical variables, using the caregivers general facet on health and overall QOL as the dependent variable categorized as 0poor QOL, 1average/high QOL–as required by the logistic regression analysis method The categorization was derived by using the groups mean, plus/minus 1 SD24 The independent variables were as follows:
patients and caregivers sociodemographic characteristics; the patients and caregivers admission of additional medical illness yes/no; the general facet computed from the caregivers impression of the patients QOL high/average/poor QOL; type of diabetes; duration of illness; caregiver relationship to patient; and presence of symptoms of hypoglycemia, GI problems and sexual problems Second, to test the reliability of the results from logistic regression, the regression analysis on caregivers general facet on QOL was repeated in multiple regression using continuous variables as predictors age of patient and caregiver, duration of illness, age at onset of illness, general facet on QOL for patients and general facet caregiver impression of patients QOL In this case, the caregivers general facet was used as a continuous dependent variable The impact of the caregivers perception of the patient on the caregivers QOL was further assessed as follows: 1 correlation of the domain scores derived from the caregiversimpression of the patients, with the corresponding domain scores of the caregivers; and 2 correlation of the caregivers domain scores with the corresponding scores of the patients The
level of statistical significance was set at 5 and all tests were twotailed A Bonferroni correction was applied for multiple tests, and in such cases P was 005/60008 for the domain scores, or P005/260002 for differences in WHOQOL-Bref items between caregivers of type-1 and type-2 patients
RESULTS Sociodemographic Characteristics of Subjects Table 1
The caregivers consisted of 94 390 men mean age 387, SD128 and 146 610 women mean age 346, SD104; t28, df238, P0006 The mean age of all the caregivers was 362 SD116 years There were no significant caregiver gender differences in patients type of diabetes
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P005 Caregivers of type-1 patients were significantly older than the general population subjects, who were similar in age to caregivers of type-2 patients P00001 Caregivers were related to the patients as parents 36 or 149, siblings 46 or 191, own nuclear family ie, spouse/child, 113 or 469, and members of the extended family 46 or 191 The 139 general population participants consisted of 87 626 men and 52 374 women Compared with the general population group, the caregivers were significantly more likely to be women, in
marital situation P00001, of lower educational status P00001 and unemployed P00001
Group Satisfaction with QOL Items Table 2: Hypothesis 1
The caregivers of type-2 patients had a higher prevalence of satisfaction 
with their life circumstances for all the items After Bonferroni correction, this trend reached significance for the following items: health satisfaction 2120, df2, P 0002, activities of daily living P0002, and personal relations P0001 Using the operational criteria for group satisfaction earlier highlighted, the caregivers of type-1 patients, as a group, were not highly satisfied with any item of the WHOQOL-Bref As hypothesized hypothesis 1, while they were dissatisfied with items that reflected the reality of their poor material circumstances eg, money, transport, healthcare
Table 3 Comparison of QOL domain scores of caregivers of diabetes subjects and general population group Diabetes Caregivers Type 1 Type 2 Gen Popn F DF N105 N135 N139 QOL Domains Mean SD Mean SD Mean SD General facet 73 18 79 15 77 16 59 2/379 QOL
P
Signif Different Groups
Signif Covariates
0003 Type 2 type 1 Occup carer: gen popn P0004 Diagnosis: P0001 0001 Gen popn/ type 2 type 1 Type
2/gen popn type 1 Type 2/gen popn type 1 ns
Physical sixdomain model Psychological six-domain Independence
104 21
113 23
114 19 77 2/373
175 37
191 35
188 29 74 2/364
0001
ns
142 29
156 29
152 27 78 2/376
0000
Educ carer: P0004 Diagnosis: P0003 ns
Social relations
103 30
113 25
109 26 46 2/361
0011 Type 2 type 1 gen popn 0031 Type 2 gen popn type 1
Environment
269 59
276 59
258 43 35 2/366
Educ carer: P0015 Diagnosis: P01
Spiritual Physical four-domain
38 11 245 47
41 09 268 48
39 09
17 2/373
ns 0000 Type 2/gen popn type 1 Educ carer: P0021 Diagnosis: P0000 Educ carer: P0041 Diagnosis: P0003
266 37 46 2/365
Psychological six-domain
212 44
231 41
228 37 34 2/353
0003
Type 2/gen popn type 1
In ANCOVA, differences between groups were no longer significant
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information and opportunity for leisure, they expressed some satisfaction with items that reflected the reality of the strengths of their traditional society support from friends, personal relationships and their personal strengths satisfaction with the self, bodily
appearance, etc as well as moderate satisfaction with the item that reflected hope on life being meaningful While the caregivers of type-2 patients endorsed several items at the highest, moderate and bare levels of satisfaction, there was a similar pattern with the caregivers of type-1 patients in the types of items that they were dissatisfied with The general population subjects had a similar pattern of satisfaction with items of the WHOQOLBref as the caregivers of type-2 patients
F42, df3/240, P0006, social relations F52, P0002 and environment F37, P0012 In ANCOVA, with the following as covariates: patients and caregivers age, education, marital status and caregiver having a medical illness, the results for the social relations and environment domains were sustained But for the independence domain, while the parents and siblings had lower scores than the extended family members, the score for spouse/own child was no longer significantly higher than those of the parents and siblings
Relationship of Caregivers Perceptions of Patients with Caregivers QOL: Hypotheses 2 3
In all the domains, the caregivers QOL domain scores were highly significantly correlated with the domain
scores derived from their impression of the patients Pearsons r ranged 023071, P0001 In logistic regression analysis, the only variable that entered the equation to predict the caregivers QOL was the caregivers impression of the patients general facet on QOL ß84, Exponential of ß45110 The model accounted for 105 of the variance and had an overall correct prediction rate of 857 In multiple stepwise regression analysis, the significant predictors of caregivers QOL were the caregivers impression of the patients general facet on QOL ß042, T68, P00001, age of the patients ß016, T28, P0006 and patients general facet on QOL ß014, T21, P0039 The model accounted for 311 of the variance 274 due to caregivers impression of the patients
Relationship of Patients Characteristics to Caregivers QOL Domain Scores: Hypothesis 2
Caregivers QOL domain scores did not differ significantly by patients gender and level of education P005 But caregivers of patients who were married versus caregivers of patients who were single and caregivers of patients who were in medium/high-skill employment versus caregivers of patients who were students had significantly higher QOL scores for all domains P0002 The
correlations of patients ages with caregivers QOL scores for all domains were rather low Pearsons r ranged 023029, except environment, 0171, but positive and highly significant P mostly 00001 Similarly, correlations of patients duration of illness with caregivers QOL domain scores were low Pearsons r ranged 014019 but was positive for all domains and met Bonferroni correction for significance for the following domains: psychological, independence and social relations P0008 The presence of the patients complications of diabetes of interest had no significant impact on caregiver QOL domain scores
Comparison of Caregiver QOL Domain Scores with the General Population Group and by Patients Diagnosis Table 3: Hypothesis 4
When we compared the domain scores across the three groups using ANOVA, we found the following: 1 The caregivers of type-2 patients had higher scores than the caregivers of type-1 patients for all the domains This trend reached significance for all the domains P0001, except for the environment and spiritual; 2 the general population group had significantly higher scores than caregivers of type-1 patients for the following domains: physical health P0001, psychological
health P0001 and independence P0001; 3 caregivers of type-2 patients had significantly higher scores than the general population group only for the environment domain P003; otherwise, the two groups had similar scores for all the other domains However, in ANCOVA, with the demographic variables age, gender, occupation, education, marital status as
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Relationship of Caregivers Characteristics with Caregivers QOL Domain Scores: Hypothesis 2
Caregivers gender, age, marital and occupational status had no significant impact on their QOL domain scores But those with at least a college level of education had significantly higher scores for the general facet, physical health and independence domainsF ranged 4058, df2/239, P0004 Those with no medical problems had significantly higher scores for these three domains, plus the environment domain T ranged 2435, df239, P ranged 00200001 In ANOVA, the tendency for parents and siblings to have lower QOL domain scores compared with members of the extended family and own family reached significance for the following domains: independence
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CAREGIVERS
covariates, differences between the caregivers and the general population group on the environment domain were no longer significant; 4 the three groups had similar scores for the spiritual domain; 5 in ANCOVA, the demographic covariates had no significant impact for the physical, psychological and social relations domains Although, the impact of occupation was significant for the group differences in general facet scores, the impact of belonging to the groups ie, the diagnosis effect was far more important This was also true for the significant impact of education on the independence domain, and the four-domain physical health and psychological health When we compared the domain scores of the caregivers with those of the patients in paired t tests, we found that while the two groups of scores were highly correlated Pearsons r ranged 052 078, P000001, the caregivers had significantly higher scores than the patients for all the domains T ranged 2898, P at least0008, except for the spiritual P0058
DISCUSSION
The major limitations of the study include its crosssectional nature and the fact that the subjects were not representative of the general population of diabetic
patients family caregivers As this was not a direct study of family burden, we did not attempt to link burden indices with caregiver QOL In addition, the general population group was significantly different from the caregivers sociodemographically The strengths of our study are the fairly large sample size of caregivers of the two diabetes patient groups, the linking of caregiver appraisal of the patient with QOL indices, the comparison of patient/caregiver/ general population sample QOL items and domain scores and the fact that these subjects were studied in multiple locations representative of the medical outpatient service clinics of the country Although the general population group had significant sociodemographic differences with the caregivers, we used appropriate statistics to control for the impact of these differences on QOL domain scores Hence, we believe that the group was useful in showing the impact of disease and disease type on caregiver subjective QOL for patients in stable condition The usefulness of our ANCOVA operations is shown by the fact that it successfully showed the significant impact of sociodemographic variables in the analysis for caregivergeneral
population QOL differences Table 3 The findings supported our first hypothesis about caregivers satisfaction with QOL items Hence, Table 2 shows that, as a group, while they were predominantly dissatisfied with items related to their poor material circumstances, they were satisfied with items that reflected the reality of the strengths of their
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traditional society as well as the item on life being meaningful and their personal strengths This is a reflection of the reliability of their ratings In crossnational European studies,28 it was found that the level of satisfaction in certain domains appeared to be associated with the local style of living and culture This level of subjective satisfaction among our caregivers in the face of adversities is well known in the literature and is evidence of the strength of these families, especially when there is social support and family cohesion, as in the case of our subjects1,4,29 The finding that over two-thirds of caregivers were of the view that the patients lives were meaningful is an indication of hopefulness as a possible means of coping in these families, a phenomenon that has been
linked to positive psychosocial outcome30 For the second hypothesis, we found that patients age and duration of illness were positively correlated with caregiver QOL domain scores Caregivers of patients in better occupational and marital circumstances had higher QOL scores Caregivers who were better educated, married, had no illness condition and were caring for type-2 patients had higher QOL scores; and caregivers who were parents and siblings had lower scores, compared with those who were nuclear own family and members of the extended family In addition, caregiverpatient domain scores were highly correlated, and the caregivers had significantly higher scores than the patients The few caregiver QOL literature available shows that, while patients and caregivers factors contribute to caregivers QOL, the direction of associations is inconsistent15,31 Hence, the value of these findings is that, at the local level, they may facilitate the development of interventions that enhance patient and family outcomes31 In our case, it appears that as the patient grows older and the supportive family becomes more experienced in the management of the illness ie, with longer duration of illness, it
helped the caregiving situation for the patient to have income, be in a stable marital situation, and for the caregiver to be educated, in a stable family situation and be free from illness This is similar to the family scenario that family studies of diabetes have consistently found to be associated with good outcome1,2,7,14 However, our sample was not representative of the general population of diabetes families, and, hence, there is need for psychosocial interventions that will pay attention to the many families where the patients are younger, the illness is still in the early stages, the patients and caregivers are unemployed and have little education, and the caregivers have medical problems Perhaps the naturally more intense emotional involvement of the parents and the usual psychological dynamics of sibling family relationships32
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accounted for their lower domain scores in comparison with other kinship relationship groups Interestingly, we found that in analysis of the patients data to be presented elsewhere, patients who were being cared for by their siblings and parents had lower domain scores These findings
imply that clinicians should not take family kinship relationships and family adjustment among their patients for granted Our most interesting finding is the support for the third hypothesis, whereby the most important predictor of caregiver QOL was the caregivers appraisal of the patients QOL The predictive power of caregiver positive appreciation of the patients QOL has now been replicated in three subject groups–namely, Sudanese psychiatric patients,33 their family caregivers16 and diabetic patients to be presented elsewhere The salutary effect of caregiver positive appreciation of the patient and the caregiving role on subjective burden and QOL has been robustly predicted by the findings from expressed emotions EE research34 and studies that specifically assessed the predictors of caregiver subjective QOL5,32,35 Taken together with previous reports that family caregivers appraisal of the care situation had significant impact on patients QOL,5 this robust finding implies that the family caregiving situation affects the QOL of all members Hence, the clinician needs to pay attention to the dynamics of the family caregiving situation in order to ensure better quality of care In
particular, promoting family caregiver awareness of diabetes mellitus is a sure way of enhancing their caregiving role and the QOL of the patients and caregivers18 In analyzing for the fourth hypothesis, we found that caregivers of patients with type-2 diabetes and the general population group had similar QOL scores and that they had significantly higher scores than type-1 diabetes caregivers Also, the caregivers had higher scores than the patients This parallels the finding in the literature about the relative severity of type-1 and type2 diabetes and the associated levels of burden,29 and is in line with the impressions in the literature15
patients and caregivers without such support, as a way of improving the quality of care Our findings indicate that there is need to pay particular attention to situations where the patients are younger, the illness is still in the early stages, the patients and caregivers are unemployed and have little education, and the caregivers have medical problems The robust finding on the impact of caregiver appraisal means that clinicians have great need to invest in promoting family caregiver awareness of chronic medical illnesses to enhance their
caregiving role in what has been termed the invisible healthcare system17 and the QOL of the patients and caregivers REFERENCES
1 Trief PM, Ploutz-Snyder R, Britton KD, et al The relationship between marital quality and adherence to the diabetes care regimen Ann Behav Med 2004;27:148-154 2 Fisher L, Chelsea CA, Bartz RJ, et al The family and type 2 diabetes: a framework for intervention Diabetes Educ 1998;24:599-607 3 McKelvey J, Waller DA, North AJ, et al Reliability and validity of the Diabetes Family Behavior Scale DFBS Diabetes Educ 1993;19:125-132 4 Trief PM, Grant W, Elbert K, et al Family environment, glycemic control, and the psychosocial adaptation of adults with diabetes Diabetes Care 1998;21:241-245 5 Yamamoto-Mitani N, Ishigaki K, Kuniyoshi M, et al Subjective quality of life and positive appraisal of care among Japanese family caregivers of older adults Qual Life Res 2004;13:207-221 6 Pieper BA, Kushion W, Gaida S The relationship between a couples marital adjustment and beliefs about diabetes Diabetes Educ1990;16:108-112 7 Thompson SJ, Auslander WF, White NH Comparison of single-mother and two-parent families on metabolic control of children with diabetes Diabetes
Care 2001;24:234-238 8 Laffel LMB, Connell A, Vangsness L, et al General quality of life in youth with type 1 diabetes Diabetes Care 2003;26:3067-3073 9 Wing RR, Marcus MD, Epstein LH, et al A family-based approach to the treatment of obese type II diabetic patients J Consult Clin Psychol 1991; 59:156-162 10 Brod M Quality of life issues in patients with diabetes and lower extremity ulcers: patients and caregivers Qual Life Res 1998;7:365-372 11 Nabuurs-Franssen MH, Huijberts MS, Nieuwenhuijzen-Kruseman AC, et al Health-related quality of life of diabetic foot ulcer patients and their caregivers Diabetologia 2005; 48:1906-1910 12 Holmes J, Gear E, Bottomley J Do people with type 2 diabetes and their carers lose income? T2ARDIS-4 Health Policy 2003;64:291-296 13 Elrayah H, Eltom M, Bedri A, et al Economic burden on families of childhood type 1 diabetes in urban Sudan Diabetes Res Clin Pract 2005;70:159-165 14 Grey M, Boland EA, Yu C, et al Personal and family factors associated with quality of life in adolescents with diabetes Diabetes Care 1998;21: 909-913 15 Li TC, Lee YD, Lin CC, et al Quality of life of primary caregivers of elderly with cerebrovascular disease or diabetes
hospitalized for acute care Qual Life Res 2004;13:1081-1088 16 Awadalla AW, Ohaeri JU, Salih AA, et al Subjective quality of life of family caregivers of community living Sudanese psychiatric patients Soc Psychiatry Psychiatr Epidemiol 2005;40:755-763 17 Ohaeri JU The burden of caregiving in families with a mental illness: review of 2002 Curr Opin Psychiatry 2003;16:457-465 18 Elbagir MN, Etayeb NO, Eltom MA, et al Health-related quality of life in insulin-treated diabetic patients in the Sudan Diabetic Res Clin Pract 1999; 46:65-73 19 Elbagir MN, Eltom MA, Elmahadi EM, et al A population-based study of the prevalence of diabetes and impaired glucose tolerance in adults in northern Sudan Diabetes Care 1996;19:1126-1128
CONCLUSION
Coupled with the finding of relatively high subjective QOL for caregivers of psychiatric patients in this community,33 the relatively high subjective QOL for these caregivers of diabetic patients should sustain therapeutic optimism about outcome for these chronic medical illnesses in this setting, and their impact on family burden and QOL Since these findings referred to caregivers and patients in supportive family situations and they were generally
dissatisfied with their material circumstances of living, health planners in this country would do well to invest in social welfare programs for the many
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QUALITY OF LIFE OF DIABETES CAREGIVERS 20 Elbagir MN, Eltom MA, Elmahadi EM, et al A high prevalence of diabetes mellitus and impaired glucose tolerance in the Danagla community in northern Sudan Diabetes Med 1998;15:164-169 21 Elbagir MN, Eltom MA, Mahadi EO, et al Pattern of long-term complications in Sudanese insulin-treated diabetic patients Diabetes Res Clin Pract 1995;30:59-67 22 Penson DF, Latini DM, Lubeck DP, et al Do impotent men with diabetes have more severe erectile dysfunction and worse quality of life than the general population of impotent patients? Diabetes Care 2003;26:1093-1099 23 Zetina-Lopez A, Custodio-Vazquez A, Hinojosa C, et al Impact of gastrointestinal symptoms on health-related quality of life in patients with type 2 diabetes mellitus Rev Invest Clin 2003;55:594-599 24 Olusina AK, Ohaeri JU Subjective quality of life of recently discharged Nigerian psychiatric patients Soc Psychiatry Psychiatr Epidemiol 2003; 38:707-714 25
Skevington SM, Lotfy M, OConnell KA, et al The World Health Organizations WHOQOL-Bref quality of life assessment: psychometric properties and results of the international field trial A report from the WHOQOL group Qual Life Res 2004;13:299-310 26 The WHOQOL Group The WHO Quality of Life Assessment WHOQOL: development and general psychometric properties Soc Sci Med 1998;46: 1569-1585 27 Sainfort F, Becker M, Diamond R Judgments of quality of life of Individuals with severe mental disorders: patient self-report versus provider perspectives Am J Psychiatry 1996;153:497-502 28 Gaite L, Vazquez-Barquero JL, Borra C, et al Quality of life in patients with schizophrenia in five European countries: the EPSILON study Acta Psychiatr Scand 2002;105:283-292 29 Peyrot M, McMurry JF Jr, Kruger DF A biopsychosocial model of glycemic control in diabetes: stress, coping and regimen adherence J Health Soc Behav 1999;40:141-158 30 Bland R, Darlington Y The nature and sources of hope: perspectives of family caregivers of people with serious mental illness Perspect Psychiatr Care 2002;38:61-68 31 Wicks MN, Milstead EJ, Hathaway DK, et al Subjective burden and quality of life in family caregivers of
patients with end stage renal disease ANNA J 1997;24:527-528 32 Heru AM, Ryan CE, Vlastos K Quality of life and family functioning in caregivers of relatives with mood disorders Psychiatr Rehab J 2004;28:67-71 33 Awadalla AW, Ohaeri JU, Salih AA, et al Subjective quality of life of community living Sudanese psychiatric patients: comparison with caregivers impression and control group Qual Life Res 2005;14:1855-1867 34 Raune D, Kuipers E, Bebbington PE Expressed emotion at first episodepsychosis: investigating a carer appraisal model Br J Psychiatry 2004;184: 321-326 35 Poston D, Turnbull A, Park J, et al Family quality of life: a qualitative inquiry Ment Retard 2003;41:313-328
Journal of the National Medical Association
Call for Papers
EDUCATION OF PHYSICIANS September 2006
JNMA will be publishing a theme issue covering education of physicians
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This is a call for manuscripts
Please refer to the education theme issue in your cover letter Submission
guidelines are located on NMAs website at wwwnmanetorg under publications, JNMA Please e-mail your submissions to shaynes@nmanetorg Eddie Hoover, MD JNMA Editor-in-Chief
Publication, not manuscript submission, dates Most submissions needed four months or more ahead of publication date
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