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A comparative study of caregivers’ perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia SANDEEP GROVER, SUBHO CHAKRABARTI, DEEPAK GHORMODE & ALAKANANDA DUTT
Grover S, Chakrabarti S, Ghormode D, Dutt A. A comparative study of caregivers’ perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia. Nord J Psychiatry 2015;Early online:0–0. Background: Although many studies in schizophrenia have evaluated health-care needs, there is a lack of data on the needs of patients with bipolar affective disorder (BPAD), with only occasional studies evaluating them, and no study has evaluated the relationship of health-care needs of patients with caregiver’s burden. Aim: To study the relationship of caregiver’s burden and needs of patients as perceived by caregivers of patients with BPAD and schizophrenia. Method: Caregivers of patients with BPAD and schizophrenia were assessed using the Camberwell Assessment of Needs – Research version (CAN-R) and Supplementary Needs Assessment Scale (SNAS), the Family Burden Interview schedule (FBI) and the Involvement Evaluation Questionnaire (IEQ). Results: Mean total needs of patients on CAN-R were 7.54 (SD 3.59) and 7.58 (SD 4.24) for BPAD and schizophrenia respectively. Mean total needs for SNAS were 7.24 (SD 3.67) and 7.68 (SD 5.02) for BPAD and schizophrenia groups, respectively. Total objective and subjective burden as assessed on FBI was significantly more for the schizophrenia group. Caregivers of patients with BPAD perceived significantly less disruption of routine family activities and lower impact on the mental health of others. On IEQ, the mean score on the domain of supervision was significantly higher for the BPAD group. In the schizophrenia group, positive correlations were seen between the total number of unmet and total (met and unmet) needs and certain aspects of burden, but no such correlations emerged in the BPAD group. Conclusion: There is no correlation between number of needs and burden in the BPAD group; however, in the schizophrenia group the number of needs correlated with the perceived burden. Accordingly, orienting services to address needs of patients with schizophrenia can lead to reduction in burden among caregivers. • Keywords: Bipolar disorder, Burden, Need, Schizophrenia Dr Sandeep Grover, Associate Professor, Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh 160012, India. Email: drsandeepg2002@yahoo. com; Accepted 18 March 2015.
B
ipolar affective disorder (BPAD) is understood as an episodic disorder with inter-episodic recovery. However, over the years it has been realized that even during remission, residual symptoms may still be present in a high proportion of patients with BPAD (1–3) and, although syndromal recovery may be achieved soon after hospitalization, functional recovery is more difficult to achieve (4). Many patients experience psychosocial and occupational difficulties (5, 6), financial problems (7), marital failure (8, 9), substance abuse (10–12), neuropsychological deficits (13) and suicide (14).
© 2015 Informa Healthcare
Due to the various negative consequences, BPAD places a considerable burden on the treating agencies and society as a whole, but the major brunt is borne by the families. Various studies from India and abroad have shown that bipolar disorders place considerable burden, both subjective and objective, on caregivers (15–21). Although many studies in schizophrenia have evaluated health-care needs (22–24), there is a lack of data on the needs of patients with BPAD, with only occasional studies evaluating them (23, 24). There is no study which has evaluated the relationship of health-care needs of DOI: 10.3109/08039488.2015.1033010
GROVER S ET AL.
patients with caregiver’s burden. This provided the impetus for the current study, which aimed to assess the health-care needs of patients with BPAD as perceived by their primary caregivers and to study the relationship of needs and burden in patients with BPAD in their clinically stable phase, compared to a matched group of patients with schizophrenia in remission.
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Methodology The study was conducted during the period of January to December 2010 in the psychiatry department of a multispecialty hospital catering to a large section of the population of northern India. The study was approved by the Ethics Committee of the Institute. All participants were recruited after obtaining proper written informed consent. A cross-sectional study design was employed. The patients and their caregivers were assessed only once, at the time of intake into the study. Participants were recruited by convenient sampling from the patient population attending outpatient services. The study groups comprised 50 patients with BPAD and their caregivers. An equal number of patients with schizophrenia and their caregivers were chosen as a comparator group. The diagnoses of BPAD and schizophrenia were made as per the International Classification of Mental and Behaviour Diseases, tenth revision (ICD-10) (25). To be included in the study, the patients of either group were required to be clinically stable (i.e. they must not have experienced any episode (BPAD group) or exacerbation (schizophrenia group) in the last 3 months (on anamnestic recall and scrutiny of medical records) and on a stable dose of psychotropics for the last 3 months (i.e. not more than a 50% hike or reduction of dosages of psychotropics during this period). Those with co-morbid psychiatric disorders, co-morbid chronic physical illness and organic brain syndromes were excluded. To be included in the study the caregivers were required to be older than 18 years of age, free from any diagnosed psychiatric (except for tobacco dependence) or physical ailment, living with the patients, and involved in the management and care of the patients for at least 1 year. Patients of both study groups were matched on age, family income and locality.
Instruments
Camberwell Assessment of Need – Research version (CAN-R) The Camberwell Assessment of Need – Research version (CAN-R) was developed by the Section of Community Psychiatry (PriSM) at the London Institute of Psychiatry. The instrument is described as a tool for assessing the needs of people suffering from serious mental illness.
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The CAN-R scale consists of clinical and social needs divided into 22 areas. The CAN-R is a valid and reliable instrument for assessing the needs of people with severe mental illness (26, 27) and a complete assessment takes around 30 min. SUPPLEMENTARY NEEDS ASSESSMENT SCALE The Supplementary Needs Assessment Scale (SNAS) was developed as an attempt at our institute to assess the needs of the patients of severe mental disorders, as perceived by caregivers. It was felt that CAN-R did not address some of the important health-care needs of Indian patients. Hence, an instrument was designed as part of one of our previous studies to evaluate health-care needs which were considered to be more relevant to patients and the treatment settings in India (23). For this scale, items were generated after discussions with fellow mental health professionals, particularly focusing on areas that were considered to be unique to Indian patients and treatment settings. Additionally, the instrument was tried out among 30 patients and their caregivers, and further modifications were made following this try-out. The final version of the instrument has 21 items. Most of the items in the scale are related to welfare benefits. Some of the items represent health-care needs not covered by the CAN-R, while other items are elaborations of needs included in the CAN-R. The scoring pattern for the instrument was kept in line with the CAN-R, with no needs rated as 0, met needs rated as 1, and unmet needs rated as 2. FAMILY BURDEN INTERVIEW SCHEDULE The Family Burden Interview Schedule (FBI) was developed by Pai and Kapur (28). It comprises 24 items grouped into six areas. There is also another open-ended question about any type of burden which family perceives and is not covered by the 24 items. Finally, the last item is to assess the subjective burden experienced by the family. Each item is rated on a scale of 0–2. After completing the interview a global rating of the family burden on the same 0–2 scale is done by the clinician. The reliability and validity coefficients are 0.87 and 0.72, respectively (28). INVOLVEMENT EVALUATION QUESTIONNAIRE The Involvement Evaluation Questionnaire (IEQ) was originally developed in the Netherlands (29, 30). The instrument has been refined over several versions and has been translated into a number of languages. Psychometric properties such as reliability, internal consistency, factor structure, coverage and comprehensiveness, and ease of use have been examined for most of these versions, and have been found to be satisfactory. Recently the IEQ – European version was translated into Hindi in our department, using the World Health Organization methodology of translation and back translation (31). Certain adaptations were also made in the scale to suit Indian conditions. NORD J PSYCHIATRY·EARLY ONLINE·2015
CAREGIVERS’ PERCEPTIONS OF HEALTH-CARE NEEDS AND
The Hindi version has good psychometric properties. Factor analysis of the scale yielded four subscales covering 29 items. For this study the Hindi version of the IEQ was used (31). It has also been shown to have good concurrent validity with the FBI (32).
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GLOBAL ASSESSMENT OF FUNCTIONING SCALE The Global Assessment of Functioning Scale (GAF) provides measures of overall functioning relating to psychiatric symptoms (33).
Procedure Patients with clinical diagnoses of BPAD and schizophrenia attending the outpatient services with a caregiver were approached and were explained about the nature of the study. Consenting patients and their caregivers who agreed to participate were recruited. The sociodemographic data of the patients and their caregivers was recorded. The clinical details of patients were completed from the information provided by the patient and his/her caregiver and their medical records. The patients were assessed on GAF. The caregivers were assessed on CAN-R, SNAS and FBI. Then the caregivers were invited to complete the IEQ. All the assessments were done by qualified psychiatrists.
Statistical analysis Data was analysed using SPSS-14 (Chicago, IL). Means and standard deviations with ranges were calculated for the continuous variables, and frequency and percentages were calculated for the nominal and ordinal variables. Comparisons were done by using the chi-squared test or t-test. Pearson’s product moment or Spearman’s rank correlation was used to study the relationship between perceived burden and needs. In view of the multiple correlations used, partial Bonferroni’s correction was used to lower the likelihood of type I errors. After a partial Bonferroni’s correction the significance value of p was fixed at ⬍ 0.01.
BURDEN
on average the patients had been ill for about 13 years by the time they were assessed. Other details are shown in Table 1.
Needs of patients as perceived by their caregivers As shown in Table 2, for CAN-R the most common needs (total needs) of patients as perceived by the caregivers were those of welfare benefits, reported by all the caregivers. In the BPAD group other commonly reported needs included those of information about the illness and treatment (84%), relief of psychological distress (84%) and amelioration of psychotic symptoms (78%). In the schizophrenia group the most commonly reported needs were amelioration of psychotic symptoms (76%), information about the illness and treatment (68%), relief of psychological distress (62%) and intimate relationships (52%). As evident from Table 2, for SNAS, as per the caregivers, the most common total needs of patients with BPAD were those of psycho-education (82%), medical reimbursement (70%), free treatment (68%), help from government and non-governmental agencies (68%) and financial help (56%). The most commonly reported total needs by the caregivers of patients with schizophrenia included psychoeducation (76%), free treatment (60%), medical reimbursement (58%) and certification (56%). Of these needs only the psycho-education needs were met for the majority of the patients.
Comparison of needs of patients with bipolar disorder and schizophrenia With CAN-R, the identified areas of total needs as perceived by the caregivers of patients with BPAD were significantly lower in the domains of looking after home and need of company. However, significantly higher numbers of needs were reported in the domains of psychological distress and safety to self, compared to those with schizophrenia. For SNAS, the total needs as perceived by the caregivers of patients with BPAD were significantly lower in the domains of travel concession, rehabilitation facilities and certification needs.
Results Sociodemographic profile of study groups
Total number of needs as perceived by caregivers
The demographic profile of patients and caregivers of both the groups is shown in Table 1. Caregivers of patients with BPAD were significantly more likely to be female, and spouses of patients rather than their parents. They were also spending significantly more time per day in caring for the patient than caregivers of those with schizophrenia.
With CAN-R, the mean number of total needs of patients as perceived by the caregivers was ∼7.5 for both the groups (see Table 3). There was no difference between the two groups in terms of mean number of met and unmet needs. For SNAS the mean numbers of total unmet needs in both the groups were ⬎ 7 and there was no significant difference between the two groups on this variable.
Clinical profile of study groups
Burden as perceived by the caregivers
Table 1 depicts the clinical profile of the patients. Age of onset in both groups was about 28 years. This meant that
Table 4 shows the comparison of caregiver burden for the FBI and the IEQ. On the FBI, caregivers of patients with
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Table 1. Sociodemographic and clinical profile of patients and caregivers of both the groups.
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Variables Patient’s profile Age in years (SD) Sex – male Marital status – currently single Family income INR (SD) Education years (SD) Occupation – employed Religion – Hindu Family type– nuclear Locality – urban Caregiver’s profile Age in years Gender – male Marital status – married No. of years of education Occupation – currently employed Time spent by caregivers/day in taking care of the patient (h) Duration in years since being caregiver Relationship of caregiver with the patient Parent Spouse Sibling Children Age at onset in years Duration of illness Duration of treatment Duration of current treatment No. of visits to hospital in last 3 months Percentage of visits with caregiver in last 3 months GAF score
BPAD N ⫽ 50 Mean (SD)/ frequency (%)
Schizophrenia N ⫽ 50 Mean (SD)/ frequency (%)
41.26 (13.42) 37 (74%) 13 (26%) 16576 (14781) 11.84 (3.92) 28 (56%) 37 (74%) 25 (50%) 34 (68%)
40.60 (14.71) 21 (42%) 26 (52%) 17566 (18013) 9.38 ( 4.61) 10 (20 %) 39 (78%) 32 (64%) 37 (74%)
0.23 10.5*** 10.9*
1.44 5.23 0.43
0.81 0.001 0.05 0.76 0.005 0.04 0.48 0.07 0.50
44.98 (13.23) 24 (48%) 41 (82%) 12.62 (2.51) 25 (50%) 7.28 (3.05)
50.32 (14.93) 35 (70%) 45 (90%) 11.84 (3.44) 29 (58%) 5.43 (4.33)
1.89 5.00* 1.38 1.29 7.81 2.47*
0.06 0.02 0.5 0.198 0.258 0.015
11.61 (9.16)
11.37 (9.37)
0.13
0.897
12 (24%) 25 (50%) 10 (20%) 3 (6%) 27.98 (10.70) 13.24 (8.98) 9.19 (6.90) 5.17 (4.82) 2.16 (0.93) 96.16 (13.83) 68.94 (16.79)
20 (40%) 21 (42%) 4 (8%) 5 (10%) 28.46 (10.66) 12.64 (9.99) 9.84 (9.75) 6.94 (7.31) 1.68 (0.99) 95.50 (17.27) 57.34 (13.30)
14.61*
0.04
χ2
value/ t-test
0.28 2.87** 16.04*
0.22 0.31 0.38 1.42 2.48** 0.21 3.82***
p value
0.82 0.75 0.70 0.15 0.01 0.83 0.001
BPAD, bipolar affective disorder; GAF, global assessment of functioning; INR, indian rupees; SD, standard deviation. *p ⬍ 0.05; **p ⬍ 0.01; ***p ⬍ 0.001.
BPAD had significantly lower scores of total objective burden, total subjective burden, and significantly lower scores in the domains of disruption of routine family activities and ‘effect on mental health of others’. In contrast, the only difference obtained on the IEQ was the significantly higher scores in the supervision domain among caregivers of patients with BPAD.
Relationship between needs and burden In the BPAD group, no correlations emerged between needs and the burden as assessed by FBI or IEQ. In contrast, as shown in Table 4, in the schizophrenia group there was positive correlation between the total needs and unmet needs as assessed by CAN-R and SNAS with financial burden, disruption of family leisure (only with total needs and unmet needs as per CAN-R) and total subjective burden as assessed by the FBI, the worrying-urging I and worrying-urging II domains of IEQ and total IEQ score.
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CAN-R met needs had positive correlation with financial burden as assessed with the FBI and the worryingurging-II domain of the IEQ. CAN-R met needs had negative correlation with patient’s level of functioning as assessed by GAF.
Discussion Assessments of burden and health-care needs are two measures that can not only provide information on psychosocial outcome, but can also suggest ways and means of improving the outcome of the patient and the impact of the illness on the caregivers. These domains of burden and health-care needs as perceived by the caregivers are less often studied in BPAD compared to schizophrenia. Comparisons of findings of needs with previous studies were difficult, largely because of the wide variations in aspects such as the patients included and the assessment instruments used. Sociocultural factors and those relating to treatment settings of different studies also NORD J PSYCHIATRY·EARLY ONLINE·2015
CAREGIVERS’ PERCEPTIONS OF HEALTH-CARE NEEDS AND
BURDEN
Table 2. Details of the met and unmet needs of the patients as perceived by the caregivers.
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Variables as per needs Needs as assessed on CAN-R Accommodation Food Looking after home Self-care Daytime activities Physical health Psychotic symptoms Information about the condition Psychological distress Safety to self Safety to others Alcohol Drugs Company Intimate relationship Sexual expression Child care Education Telephone Transport Money Welfare benefits Needs as assessed on SNAS Medical reimbursement Free treatment Travel concession Rehabilitation facility Financial help Psycho-education Home visit Government/NGO help Spiritual need Religious need Job/occupation help Certification need Caregiver stress help Patient groups/society Guardianship Legal aid# Tax benefit Flexible job time Insurance# Social support More time from clinician #Chi-squared
BPAD
Schizophrenia
Met needs N (%)
Unmet needs N (%)
Unmet needs N (%)
0 0 2 (4%) 7 (14%) 5 (10%) 8 (16%) 39 (78%) 40 (80%) 40 (80%) 18 (36%) 4 (8%) 1 (2%) 2 (4%) 0 7 (14%) 8 (16%) 1 (2%) 1 (2%) 0 2 (4%) 0 3 (6%)
1 (2%) 0 10 (20%) 8 (16%) 11 (22%) 8 (16%) 0 2 (4%) 2 (4%) 8 (16%) 2 (4%) 3 (6%) 3 (6%) 0 12 (24%) 4 (8%) 8 (16%) 15 (30%) 5 (10%) 14 (28%) 29 (58%) 47 (94%)
1 (2%) 0 12 (24%) 15 (30%) 16 (32%) 16 (32%) 39 (78%) 42 (84%) 42 (84%) 26 (52%) 6 (12%) 4 (8%) 5 (10%) 0 19 (38%) 12 (24%) 9 (18%) 16 (32%) 5 (10%) 16 (32%) 29 (58%) 50 (100%)
1 (2%) 0 8 (16%) 6 (12%) 11 (22%) 8 (16%) 37 (74%) 29 (58%) 27 (54%) 6 (12%) 0 0 2 (4%) 1 (2%) 3 (6%) 3 (6%) 1 (2%) 0 1 (2%) 4 (8%) 5 (10%) 5 (10%)
1 (2%) 0 15 (30%) 16 (32%) 13 (26%) 1 (2%) 2 (4%) 5 (10%) 4 (8%) 9 (18%) 6 (12%) 0 0 8 (16%) 23 (46%) 18 (36%) 5 (10%) 15 (30%) 1 (2%) 9 (18%) 20 (40%) 45 (90%)
2 (4%) 0 23 (46%) 22 (44%) 24 (48%) 9 (18%) 39 (76%) 34 (68%) 31 (62%) 15 (30%) 6 (12%) 0 2 (4%) 9 (18%) 26 (52%) 21 (42%) 6 (12%) 15 (30%) 2 (4%) 13 (26%) 25 (50%) 50 (100%)
FE ⫽ 1.00 – 5.31* 2.1 2.66 2.61 0 3.50 6.13** 5.00* 0.0 FE ⫽ 0.11 FE ⫽ 0.43 7.81**# 1.98 3.66 0.70 0.04 0.61# 0.43 0.64 0.0
7 (14%) 12 (24%) 1 (2%) 0 4 (8%) 40 (80%) 0 1 (2%) 1 (2%) 1 (2%) 3 (6%) 0 3 (6%) 0 0 0 0 0 0 1 (2%) 6 (12%)
28 (56%) 22 (44%) 14 (28%) 15 (30%) 24 (48%) 1 (2%) 18 (36%) 33 (66%) 18 (36%) 12 (24%) 23 (46%) 18 (36%) 16 (32%) 10 (20%) 6 (12%) 1 (2%) 3 (6%) 8 (16%) 1 (2%) 6 (12%) 6 (12%)
35 (70%) 34 (68%) 15 (30%) 15 (30%) 28 (56%) 41 (82%) 18 (36%) 34 (68%) 19 (38%) 13 (26%) 26 (52%) 18 (36%) 19 (38%) 10 (20%) 6 (12%) 1 (2%) 3 (6%) 8 (16%) 1 (2%) 7 (14%) 12 (24%)
2 (4%) 8 (16%) 0 0 2 (4%) 27 (54%) 0 0 5 (10%) 4 (8%) 1 (2%) 0 3 (6%) 0 0 0 0 0 0 2 (4%) 6 (12%)
27 (54%) 22 (44%) 26 (52%) 27 (54%) 23 (46%) 9 (18%) 17 (34%) 26 (52%) 18 (36%) 15 (30%) 22 (44%) 28 (56%) 16 (32%) 13 (26%) 6 (12%) 0 5 (10%) 2 (4%) 2 (4%) 11 (22%) 9 (18%)
29 (58%) 30 (60%) 26 (52%) 27 (54%) 25 (50%) 36 (76%) 17 (34%) 26 (52%) 23 (46%) 19 (38%) 23 (46%) 28 (56%) 19 (38%) 13 (26%) 6 (12%) 0 5 (10%) 2 (4%) 2 (4%) 13 (26%) 15 (30%)
1.56 0.69 5.00* 5.91** 0.36 1.41 0.04 2.66 0.65 1.65 0.36 4.02* – 0.50 0.0 FE ⫽ 1.0 FE ⫽ 0.71 2.7# FE ⫽ 1.0 2.25 0.45
Total needs Met needs N (%) N (%)
Comparison of total needs χ2 test/Fisher’s exact Total needs (total needs comparison) P value N (%)
– 0.02 0.14 0.10 0.10 1.0 0.06 0.01 0.02 1.00
0.005 0.15 0.05 0.40 0.82 0.433 0.50 0.42 1.0 0.21 0.40 0.02 0.02 0.54 0.23 0.83 0.10 0.41 0.19 0.54 0.04 – 0.47 1.0 – 0.09 – 0.13 0.49
value with Yate’s correction. BPAD, bipolar affective disorder; FE - Fisher’s exact value; NGO, non-government organization; *p ⬍ 0.05.
appear to play a major role in determining the pattern of needs in different studies. Nevertheless, the results of the current study were broadly identical to many earlier ones. For example, among patients with BPAD, Gossens et al. (34) reported needs in somewhat similar areas, which included the need for psychological help, psychiatric help, daily living activities, household skills, help NORD J PSYCHIATRY·EARLY ONLINE·2015
with social functioning, financial and administrative skills, and addiction. Unmet needs were frequently reported for all these domains, particularly in the area of social functioning. Cleary et al. (35) found unmet needs in the domains of intimate relationships, company, psychological distress, self-harm, and daytime activities in their cohort of patients with BPAD. However, only 18%
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Table 3. Mean number of needs and burden as perceived by the caregivers. BPAD N ⫽ 50 Mean (SD)/ frequency (%)
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Variables Needs as per CAN-R CAN-R met needs CAN-R unmet needs CAN-R total needs Needs as per SNAS SNAS met needs SNAS unmet needs SNAS total needs Family Burden Interview Schedule Financial burden Disruption of routine family activities Disruption of family leisure Disruption of family interaction@ Effect on physical health of others@ Effect on mental health of others@ Objective burden Subjective burden Subjective burden No burden Moderate burden Severe burden Global objective burden (clinician rating) Global objective burden No burden Moderate burden Severe burden Involvement Evaluation Questionnaire Tension Worrying-urging I Worrying-urging II Supervision Total score
Schizophrenia N ⫽ 50 Mean (SD)/ frequency (%)
χ2 value/ t-test/ Mann-Whitney U value
P value
3.6 (1.86) 3.92 (2.74) 7.54 (3.59)
3.1 (2.23) 4.48 (3.22) 7.58 (4.24)
1.265 0.938 0.051
0.20 0.35 0.96
1.62 (1.14) 5.62 (3.24) 7.24 (3.67)
1.28 (1.28) 6.4 (4.70) 7.68 (5.02)
1.40 0.99 0.50
0.16 0.32 0.61
3.82 (2.69) 3.50 (2.42) 2.24(1.64) 1.62 (2.29) 0.20 (0.49) 0.26 (0.60) 11.64 (8.29) 0.82 (0.77)
3.38 (2.60) 4.76 (2.57) 2.76 (1.44) 2.12 (2.18) 0.54 (1.09) 0.64 (1.05) 14.18 (7.30) 1.36 (0.69)
0.833 2.526** 1.689 1015.5 1103 1030.5* 2.27* 3.67***
0.407 0.013 0.094 0.09 0.15 0.05 0.02 ⬍ 0.001
20 (40%) 19 (385) 11 (225) 0.82 (0.77)
6 (12%) 20 (40%) 24 (48%) 1.08 (0.70)
12.39**
0.002
1.76
0.08
20 (40%) 19 (38%) 11 (22%)
10 (20%) 26 (52%) 14 (28%)
4.78
0.09
1.58 0.21 0.24 1.97* 0.84
0.11 0.82 0.80 0.05 0.39
7.84 (7.80) 25.04 (11.40) 8.26 (5.39) 1.94 (3.41) 42.98(22.06)
5.64 ( 5.96) 24.58 (9.67) 8.54 (6.02) 0.80 (2.24) 39.56 (18.01)
@Mann-Whitney U values *p ⬍ 0.05; **p ⬍ 0.01; ***p ⬍ 0.001.
of subjects of this study were married and only 68% were living with their family, or in their own flat. In contrast, most patients with BPAD of the current study were married and all were living with their families.
This could explain the greater emphasis on needs for intimate relationships and company in the former study. The pattern of health-care needs obtained in this study was also quite akin to that found in a number of studies
Table 4. Correlations between needs and perceived burden in schizophrenia group (p ⬍ 0.01). SNAS unmet needs GAF score FBI Financial burden Disruption of family leisure Objective burden (total FBI score) Subjective burden IEQ Tension Worrying-urging I Worrying-urging II Total IEQ score
SNAS total needs
CAN-R met needs
CAN-R unmet needs
CAN-R total needs
0.499 0.410
0.585 0.398
0.452
0.434
0.426 0.472 0.453
0.511 0.555 0.568
⫺ 0.427 0.618
0.624
0.367 0.563
0.532
0.366 0.427 0.514 0.514
0.484 0.533 0.538
0.395
0.377 0.429
CAN-R, camberwell assessment of need – research version; FBI, family burden interview; GAF, global assessment of functioning scale; IEQ, involvement evaluation questionnaire; SNAS, supplementary needs assessment scale.
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conducted among patients with severe mental illnesses, including those with BPAD and schizophrenia (22, 36). Moreover, the pattern of needs derived from the present study was largely similar to several studies carried out among patients with schizophrenia using the CAN or the CAN-R (22, 27, 37, 38). A previous study from our centre which evaluated the needs of patients with BPAD reported a similar profile for the needs as assessed on CAN-R (23, 24). The results of the current study also echo the findings from the same centre of another earlier investigation which had used the CAN-R among patients with schizophrenia (22–24). In comparison to the schizophrenia group, a higher percentage of caregivers of patients with BPAD reported needs for allaying psychological distress and safety for self, whereas higher percentage of caregivers of patients with schizophrenia reported needs in the areas of looking after home and for sexual expression. These differences between the two groups can be understood in view of the nature of the two disorders, the level of functioning (as assessed by GAF), and the differences in the sociodemographic profiles of patients in this study. Only a few studies have previously compared the needs of patients of schizophrenia and BPAD patients. Cleary et al. (35) reported that patients with schizophrenia have more met needs compared to the patients with affective disorder and other psychiatric diagnoses, while patients with affective disorder had more unmet needs compared to patients with either schizophrenia or other psychiatric diagnoses. As already mentioned, the current study differed from the one by Cleary et al. (35) in terms of patient populations, treatment settings and assessment methods, which would be sufficient to account for the substantial differences in the results. The study by Neogi et al. (23) from our centre also noted only minor differences in the total needs of patients with BPAD and schizophrenia as reported by their caregivers. A supplementary evaluation of health-care needs was also carried out using an instrument designed specifically to cover areas not included in the CAN-R, and also to provide more information on some of the areas in the CAN-R. Two principal differences emerged from this evaluation. Firstly, unlike the CAN-R assessments, the majority of the needs on SNAS were reported as unmet in both the groups. The obvious reason for these differences was that the types of needs assessed differed greatly between the two evaluations. Second, there were minor difference in the needs of patients with schizophrenia and BPAD. Significantly higher needs for patients with schizophrenia were reported in the area of travel concessions, availing themselves of rehabilitation facilities, and certification for social benefits, whereas a higher need for flexible job timing was reported for bipolar patients. These differences more or NORD J PSYCHIATRY·EARLY ONLINE·2015
BURDEN
less echo the differential effect of these disorders on these patients and their current level of adjustment with society. RELATIONSHIP BETWEEN BURDEN AND NEEDS In the bipolar group, no relationship emerged between the needs and burden. This could possibly due to the fixing of significance at the ⬍ 0.01 level, rather than at the ⬍ 0.05 level. In the schizophrenia group the higher number of unmet and total needs had positive correlation with most of the aspects of subjective and objective burden. Previous studies have not looked at the relationship of these variables. However, certain conclusions can be drawn. Higher needs are associated with higher subjective and objective burden. In a previous study from our centre it was demonstrated that most of needs of the patients of schizophrenia were being met by the caregivers themselves (22). Hence, the relationship of met, unmet and total needs with both objective and subjective burden suggests that higher needs of the patients put more strain on the caregivers. Although caregivers do make certain efforts to meet these needs with the available resources, most of them remain unmet, especially welfare needs. These unmet needs of the patients are perceived as burdensome by the caregivers. To conclude, this study suggests that the needs of the patients as perceived by the caregivers are largely equal in the two groups. In terms of burden, with the FBI, subjective and objective burden perceived by the caregivers of patients with BPAD is lower compared to those of patients with schizophrenia. However, no difference was seen on the IEQ. The higher number of unmet needs in the schizophrenia group is associated with higher perceived burden. Hence, clinicians managing these conditions, especially schizophrenia, should focus on meeting their needs, especially their welfare needs, to reduce the burden on caregivers and improve the social outcome of patients. Certain limitations of the present investigation should be kept in mind while interpreting our results. The sample was selected in a non-random manner and the study sample was comprised of outpatients attending a general hospital psychiatry unit. Hence, the findings cannot be generalized to community samples. Some of the findings of burden and needs may be confounded by the differences seen in the sociodemographic variables between the groups. Future studies must attempt to overcome these limitations. Clearly more studies are needed in this area, with larger samples, especially with longitudinal design. The studies should also focus on the relationship of burden and needs with social support, coping and psychopathology. Interventional studies addressing the needs and other variables and their impact on the overall outcome of these disorders are also required.
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Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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22. Kulhara P, Avasthi A, Grover S, Sharan P, Sharma P, Malhotra S, Gill S. Needs of Indian schizophrenia patients: an exploratory study from India. Soc Psychiatry Psychiatr Epidemiol 2010;45:809–18. 23. Neogi R. Assessment of health-care needs of the patients with bipolar affective disorder. MD thesis, Post Graduate Institute of Medical Education and Research, Chandigarh, India, 2010. 24. Grover S, Avasthi A, Shah S, Lakdawala B, Chakraborty K, Nebhinani N, Kallivayalil R, Dalal PK, Sinha V, Khairkar P, Mukerjee DG, Thara R, Behere P, Chauhan N, Thirunavukarasu M, Malhotra S. Indian Psychiatric Society Multicentric study on assessment of health care needs of patients with severe mental illnesses as perceived by their family members and health care providers. Indian J Psychiatry 2015;57:43–50. 25. World Health Organization. The ICD-10 Classification of Mental and Behaviour Disorders: Clinical Descriptions and Diagnostic Guidelines. Geneva: WHO, 1992. 26. Phelan M, Slade M, Thornicroft G, Dunn G, Holloway F, et al. The Camberwell Assessment of Need (CAN): the validity and reliability of an instrument to assess the needs of the seriously mentally ill. Br J Psychiatry 1995;167:589–95. 27. Slade M, Thornicroft G, Loftus L, Phelan M, Wykes T. CAN: The Camberwell Assessment of Need. A comprehensive needs assessment tool for people with severe mental illness. London: Gaskell Royal College of Psychiatrists, 1999. 28. Pai S, Kapur RL. The burden on the family of a psychiatric patient: development of an assessment scale. Br J Psychiatry 1981;138:332–5. 29. van Wijngaarden B, Schene A, Koeter M, Becker T, Knapp M, Knudsen HC, et al. EPSILON Study Group. People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving. Schizophr Bull 2003;29:573–86. 30. vanWijngaarden B, Schene AH, Koeter M, Vázquez-Barquero JL, Knudsen HC, Lasalvia A, McCrone P. Caregiving in schizophrenia: development, internal consistency and reliability of the Involvement Evaluation Questionnaire – European version. EPSILON Study 4. Br J Psychiatry 2000;177(Suppl39):S21–7. 31. Grover S, Chakrabarti S, Ghormode D, Dutt A, Kate N, Kulhara P. An Indian adaptation of the Involvement Evaluation Questionnaire: similarities and differences in assessment of caregiver-burden. East Asian Arch Psychiatry 2011;21:142–51. 32. Grover S, Chakrabarti S, Ghormode D, Dutt A, Kate N, Kulhara P. Clinicians’ versus caregivers’ ratings of burden in patients with schizophrenia and bipolar disorder. Int J Soc Psychiatry 2014;60:330–6. 33. Endicott J, Spitzer RL, Fleiss JL, Cohen J. The global assessment scale. A procedure for measuring overall severity of psychiatric disturbance. Arch Gen Psychiatry 1976;33:766–71. 34. Goossens PJ, Knoppert-van der Klein EA, Kroon H,van Achterberg T. Self-reported care needs of outpatients with a bipolar disorder in the Netherlands. J Psychiatr Ment Health Nurs 2007;14:549–57. 35. Cleary M, Hunt GE, Walter G, Freeman A. The patient’s view of need and caregiving consequences: a cross-sectional study of inpatients with severe mental illness. J Psychiatr Ment Health Nurs 2006;13:506–14. 36. Pradhan SC, Sinha VK, Singh TB. Psycho-social dysfunctions in patients after recovery from mania and depression. Int J Rehabil Res 1999;22:303–9. 37. Schene AH, Koeter M, van Wijngaarden B, Knudsen HC, Leese M, Ruggeri M, et al. Methodology of the multi-site reliability study. EPSILON Study 3. Br J Psychiatry 2000;177(Suppl39):S41–8. 38. Schene AH, van Wijngaarden B, Koeter MWJ. Family caregiving in schizophrenia: domains and distress. Schizophr Bull 1998;24: 609–18. Sandeep Grover, Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India Subho Chakrabarti, Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India Deepak Ghormode, Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India Alakananda Dutt, Department of Psychiatry, Post Graduate Institute of Medical Education and Research, Chandigarh, India
NORD J PSYCHIATRY·EARLY ONLINE·2015
A comparative study of caregivers’ perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia SANDEEP GROVER, SUBHO CHAKRABARTI, DEEPAK GHORMODE & ALAKANANDA DUTT
Grover S, Chakrabarti S, Ghormode D, Dutt A. A comparative study of caregivers’ perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia. Nord J Psychiatry 2015;Early online:0–0. Background: Although many studies in schizophrenia have evaluated health-care needs, there is a lack of data on the needs of patients with bipolar affective disorder (BPAD), with only occasional studies evaluating them, and no study has evaluated the relationship of health-care needs of patients with caregiver’s burden. Aim: To study the relationship of caregiver’s burden and needs of patients as perceived by caregivers of patients with BPAD and schizophrenia. Method: Caregivers of patients with BPAD and schizophrenia were assessed using the Camberwell Assessment of Needs – Research version (CAN-R) and Supplementary Needs Assessment Scale (SNAS), the Family Burden Interview schedule (FBI) and the Involvement Evaluation Questionnaire (IEQ). Results: Mean total needs of patients on CAN-R were 7.54 (SD 3.59) and 7.58 (SD 4.24) for BPAD and schizophrenia respectively. Mean total needs for SNAS were 7.24 (SD 3.67) and 7.68 (SD 5.02) for BPAD and schizophrenia groups, respectively. Total objective and subjective burden as assessed on FBI was significantly more for the schizophrenia group. Caregivers of patients with BPAD perceived significantly less disruption of routine family activities and lower impact on the mental health of others. On IEQ, the mean score on the domain of supervision was significantly higher for the BPAD group. In the schizophrenia group, positive correlations were seen between the total number of unmet and total (met and unmet) needs and certain aspects of burden, but no such correlations emerged in the BPAD group. Conclusion: There is no correlation between number of needs and burden in the BPAD group; however, in the schizophrenia group the number of needs correlated with the perceived burden. Accordingly, orienting services to address needs of patients with schizophrenia can lead to reduction in burden among caregivers. • Keywords: Bipolar disorder, Burden, Need, Schizophrenia Dr Sandeep Grover, Associate Professor, Department of Psychiatry, Postgraduate Institute of Medical Education and Research, Chandigarh 160012, India. Email: drsandeepg2002@yahoo. com; Accepted 18 March 2015.
B
ipolar affective disorder (BPAD) is understood as an episodic disorder with inter-episodic recovery. However, over the years it has been realized that even during remission, residual symptoms may still be present in a high proportion of patients with BPAD (1–3) and, although syndromal recovery may be achieved soon after hospitalization, functional recovery is more difficult to achieve (4). Many patients experience psychosocial and occupational difficulties (5, 6), financial problems (7), marital failure (8, 9), substance abuse (10–12), neuropsychological deficits (13) and suicide (14).
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Due to the various negative consequences, BPAD places a considerable burden on the treating agencies and society as a whole, but the major brunt is borne by the families. Various studies from India and abroad have shown that bipolar disorders place considerable burden, both subjective and objective, on caregivers (15–21). Although many studies in schizophrenia have evaluated health-care needs (22–24), there is a lack of data on the needs of patients with BPAD, with only occasional studies evaluating them (23, 24). There is no study which has evaluated the relationship of health-care needs of DOI: 10.3109/08039488.2015.1033010
GROVER S ET AL.
patients with caregiver’s burden. This provided the impetus for the current study, which aimed to assess the health-care needs of patients with BPAD as perceived by their primary caregivers and to study the relationship of needs and burden in patients with BPAD in their clinically stable phase, compared to a matched group of patients with schizophrenia in remission.
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Methodology The study was conducted during the period of January to December 2010 in the psychiatry department of a multispecialty hospital catering to a large section of the population of northern India. The study was approved by the Ethics Committee of the Institute. All participants were recruited after obtaining proper written informed consent. A cross-sectional study design was employed. The patients and their caregivers were assessed only once, at the time of intake into the study. Participants were recruited by convenient sampling from the patient population attending outpatient services. The study groups comprised 50 patients with BPAD and their caregivers. An equal number of patients with schizophrenia and their caregivers were chosen as a comparator group. The diagnoses of BPAD and schizophrenia were made as per the International Classification of Mental and Behaviour Diseases, tenth revision (ICD-10) (25). To be included in the study, the patients of either group were required to be clinically stable (i.e. they must not have experienced any episode (BPAD group) or exacerbation (schizophrenia group) in the last 3 months (on anamnestic recall and scrutiny of medical records) and on a stable dose of psychotropics for the last 3 months (i.e. not more than a 50% hike or reduction of dosages of psychotropics during this period). Those with co-morbid psychiatric disorders, co-morbid chronic physical illness and organic brain syndromes were excluded. To be included in the study the caregivers were required to be older than 18 years of age, free from any diagnosed psychiatric (except for tobacco dependence) or physical ailment, living with the patients, and involved in the management and care of the patients for at least 1 year. Patients of both study groups were matched on age, family income and locality.
Instruments
Camberwell Assessment of Need – Research version (CAN-R) The Camberwell Assessment of Need – Research version (CAN-R) was developed by the Section of Community Psychiatry (PriSM) at the London Institute of Psychiatry. The instrument is described as a tool for assessing the needs of people suffering from serious mental illness.
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The CAN-R scale consists of clinical and social needs divided into 22 areas. The CAN-R is a valid and reliable instrument for assessing the needs of people with severe mental illness (26, 27) and a complete assessment takes around 30 min. SUPPLEMENTARY NEEDS ASSESSMENT SCALE The Supplementary Needs Assessment Scale (SNAS) was developed as an attempt at our institute to assess the needs of the patients of severe mental disorders, as perceived by caregivers. It was felt that CAN-R did not address some of the important health-care needs of Indian patients. Hence, an instrument was designed as part of one of our previous studies to evaluate health-care needs which were considered to be more relevant to patients and the treatment settings in India (23). For this scale, items were generated after discussions with fellow mental health professionals, particularly focusing on areas that were considered to be unique to Indian patients and treatment settings. Additionally, the instrument was tried out among 30 patients and their caregivers, and further modifications were made following this try-out. The final version of the instrument has 21 items. Most of the items in the scale are related to welfare benefits. Some of the items represent health-care needs not covered by the CAN-R, while other items are elaborations of needs included in the CAN-R. The scoring pattern for the instrument was kept in line with the CAN-R, with no needs rated as 0, met needs rated as 1, and unmet needs rated as 2. FAMILY BURDEN INTERVIEW SCHEDULE The Family Burden Interview Schedule (FBI) was developed by Pai and Kapur (28). It comprises 24 items grouped into six areas. There is also another open-ended question about any type of burden which family perceives and is not covered by the 24 items. Finally, the last item is to assess the subjective burden experienced by the family. Each item is rated on a scale of 0–2. After completing the interview a global rating of the family burden on the same 0–2 scale is done by the clinician. The reliability and validity coefficients are 0.87 and 0.72, respectively (28). INVOLVEMENT EVALUATION QUESTIONNAIRE The Involvement Evaluation Questionnaire (IEQ) was originally developed in the Netherlands (29, 30). The instrument has been refined over several versions and has been translated into a number of languages. Psychometric properties such as reliability, internal consistency, factor structure, coverage and comprehensiveness, and ease of use have been examined for most of these versions, and have been found to be satisfactory. Recently the IEQ – European version was translated into Hindi in our department, using the World Health Organization methodology of translation and back translation (31). Certain adaptations were also made in the scale to suit Indian conditions. NORD J PSYCHIATRY·EARLY ONLINE·2015
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The Hindi version has good psychometric properties. Factor analysis of the scale yielded four subscales covering 29 items. For this study the Hindi version of the IEQ was used (31). It has also been shown to have good concurrent validity with the FBI (32).
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GLOBAL ASSESSMENT OF FUNCTIONING SCALE The Global Assessment of Functioning Scale (GAF) provides measures of overall functioning relating to psychiatric symptoms (33).
Procedure Patients with clinical diagnoses of BPAD and schizophrenia attending the outpatient services with a caregiver were approached and were explained about the nature of the study. Consenting patients and their caregivers who agreed to participate were recruited. The sociodemographic data of the patients and their caregivers was recorded. The clinical details of patients were completed from the information provided by the patient and his/her caregiver and their medical records. The patients were assessed on GAF. The caregivers were assessed on CAN-R, SNAS and FBI. Then the caregivers were invited to complete the IEQ. All the assessments were done by qualified psychiatrists.
Statistical analysis Data was analysed using SPSS-14 (Chicago, IL). Means and standard deviations with ranges were calculated for the continuous variables, and frequency and percentages were calculated for the nominal and ordinal variables. Comparisons were done by using the chi-squared test or t-test. Pearson’s product moment or Spearman’s rank correlation was used to study the relationship between perceived burden and needs. In view of the multiple correlations used, partial Bonferroni’s correction was used to lower the likelihood of type I errors. After a partial Bonferroni’s correction the significance value of p was fixed at ⬍ 0.01.
BURDEN
on average the patients had been ill for about 13 years by the time they were assessed. Other details are shown in Table 1.
Needs of patients as perceived by their caregivers As shown in Table 2, for CAN-R the most common needs (total needs) of patients as perceived by the caregivers were those of welfare benefits, reported by all the caregivers. In the BPAD group other commonly reported needs included those of information about the illness and treatment (84%), relief of psychological distress (84%) and amelioration of psychotic symptoms (78%). In the schizophrenia group the most commonly reported needs were amelioration of psychotic symptoms (76%), information about the illness and treatment (68%), relief of psychological distress (62%) and intimate relationships (52%). As evident from Table 2, for SNAS, as per the caregivers, the most common total needs of patients with BPAD were those of psycho-education (82%), medical reimbursement (70%), free treatment (68%), help from government and non-governmental agencies (68%) and financial help (56%). The most commonly reported total needs by the caregivers of patients with schizophrenia included psychoeducation (76%), free treatment (60%), medical reimbursement (58%) and certification (56%). Of these needs only the psycho-education needs were met for the majority of the patients.
Comparison of needs of patients with bipolar disorder and schizophrenia With CAN-R, the identified areas of total needs as perceived by the caregivers of patients with BPAD were significantly lower in the domains of looking after home and need of company. However, significantly higher numbers of needs were reported in the domains of psychological distress and safety to self, compared to those with schizophrenia. For SNAS, the total needs as perceived by the caregivers of patients with BPAD were significantly lower in the domains of travel concession, rehabilitation facilities and certification needs.
Results Sociodemographic profile of study groups
Total number of needs as perceived by caregivers
The demographic profile of patients and caregivers of both the groups is shown in Table 1. Caregivers of patients with BPAD were significantly more likely to be female, and spouses of patients rather than their parents. They were also spending significantly more time per day in caring for the patient than caregivers of those with schizophrenia.
With CAN-R, the mean number of total needs of patients as perceived by the caregivers was ∼7.5 for both the groups (see Table 3). There was no difference between the two groups in terms of mean number of met and unmet needs. For SNAS the mean numbers of total unmet needs in both the groups were ⬎ 7 and there was no significant difference between the two groups on this variable.
Clinical profile of study groups
Burden as perceived by the caregivers
Table 1 depicts the clinical profile of the patients. Age of onset in both groups was about 28 years. This meant that
Table 4 shows the comparison of caregiver burden for the FBI and the IEQ. On the FBI, caregivers of patients with
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Table 1. Sociodemographic and clinical profile of patients and caregivers of both the groups.
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Variables Patient’s profile Age in years (SD) Sex – male Marital status – currently single Family income INR (SD) Education years (SD) Occupation – employed Religion – Hindu Family type– nuclear Locality – urban Caregiver’s profile Age in years Gender – male Marital status – married No. of years of education Occupation – currently employed Time spent by caregivers/day in taking care of the patient (h) Duration in years since being caregiver Relationship of caregiver with the patient Parent Spouse Sibling Children Age at onset in years Duration of illness Duration of treatment Duration of current treatment No. of visits to hospital in last 3 months Percentage of visits with caregiver in last 3 months GAF score
BPAD N ⫽ 50 Mean (SD)/ frequency (%)
Schizophrenia N ⫽ 50 Mean (SD)/ frequency (%)
41.26 (13.42) 37 (74%) 13 (26%) 16576 (14781) 11.84 (3.92) 28 (56%) 37 (74%) 25 (50%) 34 (68%)
40.60 (14.71) 21 (42%) 26 (52%) 17566 (18013) 9.38 ( 4.61) 10 (20 %) 39 (78%) 32 (64%) 37 (74%)
0.23 10.5*** 10.9*
1.44 5.23 0.43
0.81 0.001 0.05 0.76 0.005 0.04 0.48 0.07 0.50
44.98 (13.23) 24 (48%) 41 (82%) 12.62 (2.51) 25 (50%) 7.28 (3.05)
50.32 (14.93) 35 (70%) 45 (90%) 11.84 (3.44) 29 (58%) 5.43 (4.33)
1.89 5.00* 1.38 1.29 7.81 2.47*
0.06 0.02 0.5 0.198 0.258 0.015
11.61 (9.16)
11.37 (9.37)
0.13
0.897
12 (24%) 25 (50%) 10 (20%) 3 (6%) 27.98 (10.70) 13.24 (8.98) 9.19 (6.90) 5.17 (4.82) 2.16 (0.93) 96.16 (13.83) 68.94 (16.79)
20 (40%) 21 (42%) 4 (8%) 5 (10%) 28.46 (10.66) 12.64 (9.99) 9.84 (9.75) 6.94 (7.31) 1.68 (0.99) 95.50 (17.27) 57.34 (13.30)
14.61*
0.04
χ2
value/ t-test
0.28 2.87** 16.04*
0.22 0.31 0.38 1.42 2.48** 0.21 3.82***
p value
0.82 0.75 0.70 0.15 0.01 0.83 0.001
BPAD, bipolar affective disorder; GAF, global assessment of functioning; INR, indian rupees; SD, standard deviation. *p ⬍ 0.05; **p ⬍ 0.01; ***p ⬍ 0.001.
BPAD had significantly lower scores of total objective burden, total subjective burden, and significantly lower scores in the domains of disruption of routine family activities and ‘effect on mental health of others’. In contrast, the only difference obtained on the IEQ was the significantly higher scores in the supervision domain among caregivers of patients with BPAD.
Relationship between needs and burden In the BPAD group, no correlations emerged between needs and the burden as assessed by FBI or IEQ. In contrast, as shown in Table 4, in the schizophrenia group there was positive correlation between the total needs and unmet needs as assessed by CAN-R and SNAS with financial burden, disruption of family leisure (only with total needs and unmet needs as per CAN-R) and total subjective burden as assessed by the FBI, the worrying-urging I and worrying-urging II domains of IEQ and total IEQ score.
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CAN-R met needs had positive correlation with financial burden as assessed with the FBI and the worryingurging-II domain of the IEQ. CAN-R met needs had negative correlation with patient’s level of functioning as assessed by GAF.
Discussion Assessments of burden and health-care needs are two measures that can not only provide information on psychosocial outcome, but can also suggest ways and means of improving the outcome of the patient and the impact of the illness on the caregivers. These domains of burden and health-care needs as perceived by the caregivers are less often studied in BPAD compared to schizophrenia. Comparisons of findings of needs with previous studies were difficult, largely because of the wide variations in aspects such as the patients included and the assessment instruments used. Sociocultural factors and those relating to treatment settings of different studies also NORD J PSYCHIATRY·EARLY ONLINE·2015
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BURDEN
Table 2. Details of the met and unmet needs of the patients as perceived by the caregivers.
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Variables as per needs Needs as assessed on CAN-R Accommodation Food Looking after home Self-care Daytime activities Physical health Psychotic symptoms Information about the condition Psychological distress Safety to self Safety to others Alcohol Drugs Company Intimate relationship Sexual expression Child care Education Telephone Transport Money Welfare benefits Needs as assessed on SNAS Medical reimbursement Free treatment Travel concession Rehabilitation facility Financial help Psycho-education Home visit Government/NGO help Spiritual need Religious need Job/occupation help Certification need Caregiver stress help Patient groups/society Guardianship Legal aid# Tax benefit Flexible job time Insurance# Social support More time from clinician #Chi-squared
BPAD
Schizophrenia
Met needs N (%)
Unmet needs N (%)
Unmet needs N (%)
0 0 2 (4%) 7 (14%) 5 (10%) 8 (16%) 39 (78%) 40 (80%) 40 (80%) 18 (36%) 4 (8%) 1 (2%) 2 (4%) 0 7 (14%) 8 (16%) 1 (2%) 1 (2%) 0 2 (4%) 0 3 (6%)
1 (2%) 0 10 (20%) 8 (16%) 11 (22%) 8 (16%) 0 2 (4%) 2 (4%) 8 (16%) 2 (4%) 3 (6%) 3 (6%) 0 12 (24%) 4 (8%) 8 (16%) 15 (30%) 5 (10%) 14 (28%) 29 (58%) 47 (94%)
1 (2%) 0 12 (24%) 15 (30%) 16 (32%) 16 (32%) 39 (78%) 42 (84%) 42 (84%) 26 (52%) 6 (12%) 4 (8%) 5 (10%) 0 19 (38%) 12 (24%) 9 (18%) 16 (32%) 5 (10%) 16 (32%) 29 (58%) 50 (100%)
1 (2%) 0 8 (16%) 6 (12%) 11 (22%) 8 (16%) 37 (74%) 29 (58%) 27 (54%) 6 (12%) 0 0 2 (4%) 1 (2%) 3 (6%) 3 (6%) 1 (2%) 0 1 (2%) 4 (8%) 5 (10%) 5 (10%)
1 (2%) 0 15 (30%) 16 (32%) 13 (26%) 1 (2%) 2 (4%) 5 (10%) 4 (8%) 9 (18%) 6 (12%) 0 0 8 (16%) 23 (46%) 18 (36%) 5 (10%) 15 (30%) 1 (2%) 9 (18%) 20 (40%) 45 (90%)
2 (4%) 0 23 (46%) 22 (44%) 24 (48%) 9 (18%) 39 (76%) 34 (68%) 31 (62%) 15 (30%) 6 (12%) 0 2 (4%) 9 (18%) 26 (52%) 21 (42%) 6 (12%) 15 (30%) 2 (4%) 13 (26%) 25 (50%) 50 (100%)
FE ⫽ 1.00 – 5.31* 2.1 2.66 2.61 0 3.50 6.13** 5.00* 0.0 FE ⫽ 0.11 FE ⫽ 0.43 7.81**# 1.98 3.66 0.70 0.04 0.61# 0.43 0.64 0.0
7 (14%) 12 (24%) 1 (2%) 0 4 (8%) 40 (80%) 0 1 (2%) 1 (2%) 1 (2%) 3 (6%) 0 3 (6%) 0 0 0 0 0 0 1 (2%) 6 (12%)
28 (56%) 22 (44%) 14 (28%) 15 (30%) 24 (48%) 1 (2%) 18 (36%) 33 (66%) 18 (36%) 12 (24%) 23 (46%) 18 (36%) 16 (32%) 10 (20%) 6 (12%) 1 (2%) 3 (6%) 8 (16%) 1 (2%) 6 (12%) 6 (12%)
35 (70%) 34 (68%) 15 (30%) 15 (30%) 28 (56%) 41 (82%) 18 (36%) 34 (68%) 19 (38%) 13 (26%) 26 (52%) 18 (36%) 19 (38%) 10 (20%) 6 (12%) 1 (2%) 3 (6%) 8 (16%) 1 (2%) 7 (14%) 12 (24%)
2 (4%) 8 (16%) 0 0 2 (4%) 27 (54%) 0 0 5 (10%) 4 (8%) 1 (2%) 0 3 (6%) 0 0 0 0 0 0 2 (4%) 6 (12%)
27 (54%) 22 (44%) 26 (52%) 27 (54%) 23 (46%) 9 (18%) 17 (34%) 26 (52%) 18 (36%) 15 (30%) 22 (44%) 28 (56%) 16 (32%) 13 (26%) 6 (12%) 0 5 (10%) 2 (4%) 2 (4%) 11 (22%) 9 (18%)
29 (58%) 30 (60%) 26 (52%) 27 (54%) 25 (50%) 36 (76%) 17 (34%) 26 (52%) 23 (46%) 19 (38%) 23 (46%) 28 (56%) 19 (38%) 13 (26%) 6 (12%) 0 5 (10%) 2 (4%) 2 (4%) 13 (26%) 15 (30%)
1.56 0.69 5.00* 5.91** 0.36 1.41 0.04 2.66 0.65 1.65 0.36 4.02* – 0.50 0.0 FE ⫽ 1.0 FE ⫽ 0.71 2.7# FE ⫽ 1.0 2.25 0.45
Total needs Met needs N (%) N (%)
Comparison of total needs χ2 test/Fisher’s exact Total needs (total needs comparison) P value N (%)
– 0.02 0.14 0.10 0.10 1.0 0.06 0.01 0.02 1.00
0.005 0.15 0.05 0.40 0.82 0.433 0.50 0.42 1.0 0.21 0.40 0.02 0.02 0.54 0.23 0.83 0.10 0.41 0.19 0.54 0.04 – 0.47 1.0 – 0.09 – 0.13 0.49
value with Yate’s correction. BPAD, bipolar affective disorder; FE - Fisher’s exact value; NGO, non-government organization; *p ⬍ 0.05.
appear to play a major role in determining the pattern of needs in different studies. Nevertheless, the results of the current study were broadly identical to many earlier ones. For example, among patients with BPAD, Gossens et al. (34) reported needs in somewhat similar areas, which included the need for psychological help, psychiatric help, daily living activities, household skills, help NORD J PSYCHIATRY·EARLY ONLINE·2015
with social functioning, financial and administrative skills, and addiction. Unmet needs were frequently reported for all these domains, particularly in the area of social functioning. Cleary et al. (35) found unmet needs in the domains of intimate relationships, company, psychological distress, self-harm, and daytime activities in their cohort of patients with BPAD. However, only 18%
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Table 3. Mean number of needs and burden as perceived by the caregivers. BPAD N ⫽ 50 Mean (SD)/ frequency (%)
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Variables Needs as per CAN-R CAN-R met needs CAN-R unmet needs CAN-R total needs Needs as per SNAS SNAS met needs SNAS unmet needs SNAS total needs Family Burden Interview Schedule Financial burden Disruption of routine family activities Disruption of family leisure Disruption of family interaction@ Effect on physical health of others@ Effect on mental health of others@ Objective burden Subjective burden Subjective burden No burden Moderate burden Severe burden Global objective burden (clinician rating) Global objective burden No burden Moderate burden Severe burden Involvement Evaluation Questionnaire Tension Worrying-urging I Worrying-urging II Supervision Total score
Schizophrenia N ⫽ 50 Mean (SD)/ frequency (%)
χ2 value/ t-test/ Mann-Whitney U value
P value
3.6 (1.86) 3.92 (2.74) 7.54 (3.59)
3.1 (2.23) 4.48 (3.22) 7.58 (4.24)
1.265 0.938 0.051
0.20 0.35 0.96
1.62 (1.14) 5.62 (3.24) 7.24 (3.67)
1.28 (1.28) 6.4 (4.70) 7.68 (5.02)
1.40 0.99 0.50
0.16 0.32 0.61
3.82 (2.69) 3.50 (2.42) 2.24(1.64) 1.62 (2.29) 0.20 (0.49) 0.26 (0.60) 11.64 (8.29) 0.82 (0.77)
3.38 (2.60) 4.76 (2.57) 2.76 (1.44) 2.12 (2.18) 0.54 (1.09) 0.64 (1.05) 14.18 (7.30) 1.36 (0.69)
0.833 2.526** 1.689 1015.5 1103 1030.5* 2.27* 3.67***
0.407 0.013 0.094 0.09 0.15 0.05 0.02 ⬍ 0.001
20 (40%) 19 (385) 11 (225) 0.82 (0.77)
6 (12%) 20 (40%) 24 (48%) 1.08 (0.70)
12.39**
0.002
1.76
0.08
20 (40%) 19 (38%) 11 (22%)
10 (20%) 26 (52%) 14 (28%)
4.78
0.09
1.58 0.21 0.24 1.97* 0.84
0.11 0.82 0.80 0.05 0.39
7.84 (7.80) 25.04 (11.40) 8.26 (5.39) 1.94 (3.41) 42.98(22.06)
5.64 ( 5.96) 24.58 (9.67) 8.54 (6.02) 0.80 (2.24) 39.56 (18.01)
@Mann-Whitney U values *p ⬍ 0.05; **p ⬍ 0.01; ***p ⬍ 0.001.
of subjects of this study were married and only 68% were living with their family, or in their own flat. In contrast, most patients with BPAD of the current study were married and all were living with their families.
This could explain the greater emphasis on needs for intimate relationships and company in the former study. The pattern of health-care needs obtained in this study was also quite akin to that found in a number of studies
Table 4. Correlations between needs and perceived burden in schizophrenia group (p ⬍ 0.01). SNAS unmet needs GAF score FBI Financial burden Disruption of family leisure Objective burden (total FBI score) Subjective burden IEQ Tension Worrying-urging I Worrying-urging II Total IEQ score
SNAS total needs
CAN-R met needs
CAN-R unmet needs
CAN-R total needs
0.499 0.410
0.585 0.398
0.452
0.434
0.426 0.472 0.453
0.511 0.555 0.568
⫺ 0.427 0.618
0.624
0.367 0.563
0.532
0.366 0.427 0.514 0.514
0.484 0.533 0.538
0.395
0.377 0.429
CAN-R, camberwell assessment of need – research version; FBI, family burden interview; GAF, global assessment of functioning scale; IEQ, involvement evaluation questionnaire; SNAS, supplementary needs assessment scale.
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CAREGIVERS’ PERCEPTIONS OF HEALTH-CARE NEEDS AND
conducted among patients with severe mental illnesses, including those with BPAD and schizophrenia (22, 36). Moreover, the pattern of needs derived from the present study was largely similar to several studies carried out among patients with schizophrenia using the CAN or the CAN-R (22, 27, 37, 38). A previous study from our centre which evaluated the needs of patients with BPAD reported a similar profile for the needs as assessed on CAN-R (23, 24). The results of the current study also echo the findings from the same centre of another earlier investigation which had used the CAN-R among patients with schizophrenia (22–24). In comparison to the schizophrenia group, a higher percentage of caregivers of patients with BPAD reported needs for allaying psychological distress and safety for self, whereas higher percentage of caregivers of patients with schizophrenia reported needs in the areas of looking after home and for sexual expression. These differences between the two groups can be understood in view of the nature of the two disorders, the level of functioning (as assessed by GAF), and the differences in the sociodemographic profiles of patients in this study. Only a few studies have previously compared the needs of patients of schizophrenia and BPAD patients. Cleary et al. (35) reported that patients with schizophrenia have more met needs compared to the patients with affective disorder and other psychiatric diagnoses, while patients with affective disorder had more unmet needs compared to patients with either schizophrenia or other psychiatric diagnoses. As already mentioned, the current study differed from the one by Cleary et al. (35) in terms of patient populations, treatment settings and assessment methods, which would be sufficient to account for the substantial differences in the results. The study by Neogi et al. (23) from our centre also noted only minor differences in the total needs of patients with BPAD and schizophrenia as reported by their caregivers. A supplementary evaluation of health-care needs was also carried out using an instrument designed specifically to cover areas not included in the CAN-R, and also to provide more information on some of the areas in the CAN-R. Two principal differences emerged from this evaluation. Firstly, unlike the CAN-R assessments, the majority of the needs on SNAS were reported as unmet in both the groups. The obvious reason for these differences was that the types of needs assessed differed greatly between the two evaluations. Second, there were minor difference in the needs of patients with schizophrenia and BPAD. Significantly higher needs for patients with schizophrenia were reported in the area of travel concessions, availing themselves of rehabilitation facilities, and certification for social benefits, whereas a higher need for flexible job timing was reported for bipolar patients. These differences more or NORD J PSYCHIATRY·EARLY ONLINE·2015
BURDEN
less echo the differential effect of these disorders on these patients and their current level of adjustment with society. RELATIONSHIP BETWEEN BURDEN AND NEEDS In the bipolar group, no relationship emerged between the needs and burden. This could possibly due to the fixing of significance at the ⬍ 0.01 level, rather than at the ⬍ 0.05 level. In the schizophrenia group the higher number of unmet and total needs had positive correlation with most of the aspects of subjective and objective burden. Previous studies have not looked at the relationship of these variables. However, certain conclusions can be drawn. Higher needs are associated with higher subjective and objective burden. In a previous study from our centre it was demonstrated that most of needs of the patients of schizophrenia were being met by the caregivers themselves (22). Hence, the relationship of met, unmet and total needs with both objective and subjective burden suggests that higher needs of the patients put more strain on the caregivers. Although caregivers do make certain efforts to meet these needs with the available resources, most of them remain unmet, especially welfare needs. These unmet needs of the patients are perceived as burdensome by the caregivers. To conclude, this study suggests that the needs of the patients as perceived by the caregivers are largely equal in the two groups. In terms of burden, with the FBI, subjective and objective burden perceived by the caregivers of patients with BPAD is lower compared to those of patients with schizophrenia. However, no difference was seen on the IEQ. The higher number of unmet needs in the schizophrenia group is associated with higher perceived burden. Hence, clinicians managing these conditions, especially schizophrenia, should focus on meeting their needs, especially their welfare needs, to reduce the burden on caregivers and improve the social outcome of patients. Certain limitations of the present investigation should be kept in mind while interpreting our results. The sample was selected in a non-random manner and the study sample was comprised of outpatients attending a general hospital psychiatry unit. Hence, the findings cannot be generalized to community samples. Some of the findings of burden and needs may be confounded by the differences seen in the sociodemographic variables between the groups. Future studies must attempt to overcome these limitations. Clearly more studies are needed in this area, with larger samples, especially with longitudinal design. The studies should also focus on the relationship of burden and needs with social support, coping and psychopathology. Interventional studies addressing the needs and other variables and their impact on the overall outcome of these disorders are also required.
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Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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