|Year : 2017 | Volume
| Issue : 2 | Page : 181-186
Comparison of unmet needs of patients on treatment of schizophrenia perceived by patients and their family caregivers
Krishnan Ganesh1, Sandhya Gupta2
1 Indira Gandhi Medical College and Research Institute, Puducherry, India
2 College of Nursing, All India Institute of Medical Sciences, New Delhi, India
|Date of Web Publication||30-Jun-2017|
Scholar, Indira Gandhi Medical College and Research Institute, Puducherry
Source of Support: None, Conflict of Interest: None
Background/Objectives: The significance of need assessment has been widely recognized for providing holistic and quality care for mentally ill patients all over the world. The current study is an attempt to assess the unmet needs of patients with schizophrenia as perceived by themselves and their family caregivers. Methodology: Unmet needs were assessed on a convenience sample of 100 patients with schizophrenia and their respective 100 family caregivers from a psychiatric outpatient department of tertiary care hospital by Camberwell Assessment of Needs questionnaire using descriptive, cross-sectional, and comparative research design. Results: The results showed that mean number of unmet needs rated by patients was 7.23 (SD = 3.22) and the caregivers was 3.45 (SD = 2.43). Most common areas of unmet needs identified by patients were welfare benefits (79%), company (72%), information on condition and treatment (71%), psychological distress (70%), psychotic symptoms (57%), and physical health (55%). Most common unmet needs reported by caregivers were welfare benefits (77%), psychotic symptoms (55%), money (31%), psychological distress (29%), and information on condition and treatment (25%). Agreement on unmet needs of patients between the patients and caregivers was poor to fair in most of the areas of needs. Conclusions: There was high discrepancies and poor agreement on unmet needs perceived by patients and their family caregivers. There is a need to develop effective strategies to appreciate all the unmet needs of the patients accurately so as to act accordingly.
Keywords: Caregivers, patients, perception, schizophrenia, unmet needs
|How to cite this article:|
Ganesh K, Gupta S. Comparison of unmet needs of patients on treatment of schizophrenia perceived by patients and their family caregivers. Indian J Soc Psychiatry 2017;33:181-6
|How to cite this URL:|
Ganesh K, Gupta S. Comparison of unmet needs of patients on treatment of schizophrenia perceived by patients and their family caregivers. Indian J Soc Psychiatry [serial online] 2017 [cited 2019 May 24];33:181-6. Available from: http://www.indjsp.org/text.asp?2017/33/2/181/209177
| Introduction|| |
Schizophrenia is a major mental health problem all over the world affecting about seven per 1000 of the adult population. According to WHO report more than 50% of persons having schizophrenia do not receive appropriate care, without proper treatment schizophrenia will be increasingly incapacitating for up to 70% of patients. Patients having schizophrenia exhibit a complex mixture of clinical and social needs. Needs have been defined as “the requirements of individuals to enable them to achieve, maintain or restore an acceptable level of social independence or quality of life.” Meeting needs are important because the numbers of unmet needs are related to reduced health, poor quality of life, and ongoing health-related expenses.
The significance of need assessment has been widely recognized for providing holistic and quality care for mentally ill patients all over the world. It provides a link between problems, action, and evaluation and an important dimension in planning and development of health care services.,, Reducing symptoms and meeting patient's needs is an essential component of the treatment in schizophrenia. When needs are unmet or only partially met, patients' potential to adapt is diminished and they may use maladaptive coping or require more health care services and compensatory interventions. Prevalence of unmet needs should be an outcome criterion for the evaluation of mental health services. Listening to patients' needs is vital to meet self-perceived social needs beyond symptoms reduction and ensuring a better quality of life for people having mental disorders.
Although several instruments have been developed to evaluate needs, Camberwell Assessment of Needs (CAN) is a valid and reliable instrument for assessing the needs of people having severe mental illness (SMI). It is brief, simple to use and can be completed by a range of personnel without training.
Many studies from the western countries showed that mean number of needs reported by patients having schizophrenia varied from four to 10 with CAN., Welfare benefits, psychotic symptoms, psychological distress, information about the condition, and money as needs perceived by patients and their family caregivers. Consistently reported unmet needs include the areas of daytime activities, company, intimate relationship, information on condition and treatment, psychological distress, physical health, and psychotic symptoms.,
There was difference in the perception of needs of patients perceived by the staff and patients, whereas no difference was found in the number of needs met reported by the staff and the patients. Some studies staff reported more needs and patient reported more needs and there was a good level of agreement between ratings of patients and staff. None of the western studies reported unmet needs perceived by relatives as caregivers.
Most of the studies have concentrated on needs, not reported any correlation between unmet needs and sociodemographic factors. Only few studies reported number of needs was related to overall severity of psychopathology and unmet needs were associated with current symptomatology, severity rather than with the course of disorder.,
In India, majority of patients with schizophrenia are cared in the community by family to which they belong. The role of family becomes even greater in a country with more than 1 billion people where there is a paucity of trained personnel. The family and caregiver's role has been thus integrated in the treatment plans and in policy making.
Unlike the western countries in India, the services available for patients with SMIs are very limited and most of them live with their family and their basic needs were met by community services, family members, and friends. But it is not clear how and to what degree they do it. Families assume the role of primary caregivers because of paucity of trained mental health professionals required to cater to the vast majority of the population.
Discrepancies between patients and family caregiver's perception of needs may impact negatively on patient treatment outcome and quality of life. It is very important to assess the differences between patient and caregiver's point of view. So that, one can understand the gap between needs felt by the patient and family caregivers in a better way. It is very helpful to address the problems of the patient and to fulfil the needs of the patients. Hence, this study was designed to explore the unmet needs of persons with schizophrenia and the findings will provide basis for planning and meeting the needs of patients comprehensively.
| Methodology|| |
The aim of this study was to assess the unmet needs of patients with schizophrenia as perceived by themselves and their family caregivers.
Research design and sample
The study was carried out at an outpatient clinic, multispecialty teaching tertiary care hospital in New Delhi, India. Descriptive, cross-sectional, and comparative research design was adopted for the study. The population of the study included the patients diagnosed with schizophrenia who were availing treatment in outpatient facility and family caregivers of the persons diagnosed with schizophrenia. Family caregiver is the person in the family who involved more in direct patient care during hospital stay and after discharge in home settings was considered as the caregiver in the current study. The data were collected from the subjects for a period of 6 months.
Patients diagnosed with schizophrenia attending the outpatient clinic and family caregivers who accompanied the patient were selected by convenient sampling method. Study comprises of 100 patients and their respective 100 family caregivers.
Inclusion criteria for the patients were (1) diagnosed with schizophrenia attending the outpatient clinic for follow up according to ICD-10 criteria, (2) aged 18 years, and above (3) had an insight score of at least 3/5. (4) Patients with any comorbid disabling medical–surgical/psychiatric illness were excluded from the study.
Inclusion criteria for the family caregivers were (1) individual accompanying the patient for follow-up and had been staying with the patient for at least 6 months and involved in patient care, (2) had score of ≤2 as screened on General Health Questionnaire (GHQ), and (3) aged more than 18 years. Individuals who had been diagnosed as having a psychiatric illness, which requires treatment were excluded from the study.
Sampling design of the study
- Data sheet is a structured questionnaire contains demographic and clinical characteristics of the patient and caregiver's details prepared by the researcher to profile the sociodemographic data of the caregivers and the patients
- The GHQ-12 is a standardized self-administered screening test designed to detect probable mental health concerns. It has 12 items that are rated on a 4-point Likert scale, each item rated as 0 or 1. Any person scoring ≤2 was defined as a case with psychiatric morbidity
- The CAN —CAN is a standardized instrument that assesses 22 needs in five domains. Need is assessed and rated on a 3-point scale: 0 = no serious problem; 1 = no serious problem or moderate problem because of continuing intervention (met need); 2 = current serious problem irrespective of ongoing treatment (unmet need).
The study proposal was presented to the institute ethics committee (IEC), and the study was approved by the IEC. All tools were translated into local language, and back translation to English was done. All tools were pretested before using and reliability was established by test–retest method among 10 subjects after a gap of 72 hours. Cronbach's α of the tools were
- Data sheet, r = 0.95
- GHQ-12, r = 0.91
- CAN, r = 0.92
and found reliable.
Pilot study was carried out to assess the feasibility of the study and the results of the pilot study showed that the study was feasible in terms of data collection using these tools and statistical analysis procedures.
The patients and their respective family caregivers who met the inclusion criteria were enrolled and informed written consent was obtained from the respondents. Unmet needs of the patients, as reported by them and their family caregivers were assessed using the CAN by self-report method and semistructured interview schedule. The study was approved by the IEC.
The data were analyzed using the Statistical Package for Social Sciences s SPSS version 14.0 (SPSS, Inc., Chicago, IL). Descriptive statistics (i.e., mean, median, percentage, range, standard deviation) and inferential statistics (i.e. χ2 test, Mann–Whitney test and Kruskal Wallis test) were used. Cohen's κ coefficient was used as a measure of agreement between patient's and caregiver's perception of unmet needs. Level of significance was set as P< 0.05.
| Results|| |
Sociodemographic characteristics of the patients
Among the respondents, more than half (58%) of the patients were male and had mean age of 32.20 (SD = 10.6) years. Nearly half (49%) of the patients were unmarried, majority (91%) were Hindu, and 52% studied up to graduation. Thirty-five percent were unemployed, 26% were employed, rest were either housewife or students and (47%) had monthly family income of less than INR 10,000.
Sociodemographic characteristics of the caregivers
Among the family caregivers, majority were male (62%) and had mean age of 45.1 years (SD = 14.45). Nearly half (47%) of the caregivers were parents of the patients and (44%) of them were employed. Fifty-two percent of the caregivers studied up to 12th standard and more than one-third (37%) of them had no monthly income.
Clinical profile of the patients
The mean age of onset of illness was 26.25 ± 9.56 years with mean duration of illness 6.3 (SD = 5.36) years. Mean duration of contact with health services was 4.22 (SD = 3.67) years. Majority of the patients had (73%) noncontinuous course of illness with insidious onset of illness (53%). About two-third (70%) of the subjects had paranoid schizophrenia and (57%) of them had contact with mental health services more frequently (>1 visit in a month).
Perception of needs of the patients rated by patients and their family caregivers
[Table 1] shows the perception of the patients and caregivers in relation to their felt needs of the patients. The mean number of needs rated by patients was 12.17 (SD = 2.96), of which more than two-third (7.23 ± 3.22) were unmet needs and only a minority of needs (4.94 ± 3.44) were either met by the caregivers or other agencies. The mean number of needs reported by caregivers was 9.54 (SD = 3.56), of which less than one-third (3.45 ± 2.43) were unmet and more than two-third (6.04 ± 3.39) were met. Patient rated significantly more number of needs and unmet needs as compared to caregivers, whereas caregivers reported significantly more number of met needs than patients.
|Table 1: Comparison of perception of needs of the patients rated by patients and their family caregivers (N=200)|
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Comparison of perception of unmet needs of the patients rated by patients and their family caregivers
As shown in [Table 2], the most common areas of unmet needs identified by patients were welfare benefits, company, information on condition and treatment, psychological distress, psychotic symptoms, and physical health. Patients did not feel much unmet needs in food, safety to self, child care, safety to others, accommodation, self-care, basic education, drug, and alcohol. Less than one-third of the patients reported unmet needs in looking after the home, transport, sexual expression, intimate relationships, and telephone.
|Table 2: Comparison of perception of unmet needs of the patients rated by patients and their family caregivers (N=200)|
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Most common unmet needs reported by caregivers were welfare benefits, psychotic symptoms, money, psychological distress, and information on condition and treatment. In common with areas of unmet needs identified by the patients, relatives did not perceive the patients to have more unmet needs in company, information on condition and treatment, psychological distress, physical health, money, and daytime activities [Table 2].
Agreement between unmet needs of the patients as perceived by them and their family caregivers
Moderate level of agreement (κ coefficient level 0.41-0.60) between the unmet needs as perceived patients and their caregivers were in the areas of welfare benefits, telephone, safety to others, self-care, and alcohol. For other areas, the level of agreement between the patients and relatives were poor [Table 2].
Association of number of unmet needs with sociodemographic and socioclinical profile
Association analyses were carried out to see the relationship of unmet needs with sociodemographic and clinical variables. As shown in the [Table 3], the results showed that patients and caregivers who were illiterate reported more number of unmet needs compared with those who had education of 12th standard or more (P < 0.002, P< 0.001). More number of unmet needs was expressed by patients who had onset of illness after 25 years of age (P < 0.042) and had continuous course of illness (P < 0.016).
|Table 3: Association of unmet needs rated by patients with their socio-demographic and clinical profile (n1=100)|
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Patients who contact mental health services more frequently (>1 visit in a month) had more unmet needs compared with patients who contact to mental health services less frequently. No other sociodemographic and clinical variables had significant association with number of unmet needs.
| Discussion|| |
The reason for the selection of this framework for the current study is that the available literature on the studies conducted in Indian context are very scant in terms of understanding the perception of unmet needs of patients with schizophrenia and their family caregivers. Perception of unmet needs in various domains by patients and their relatives make interesting reading. The mean number of needs rated by patients was 12.17 (SD = 2.96) and by relatives was 9.54 (SD = 3.56), of which more than two-third and one-third was unmet according to patients and caregivers, respectively, which was comparatively high reported from western countries., This may be because of paucity of resources as well as the socioeconomic conditions in our country. Similar findings were reported in one previous study in Indian setting.
Further in contrast to the western literature where majority of needs expressed by patients were met, in our study more than two-third of the needs were unmet by available resources.,, Unmet needs in welfare benefits reported by most of the patients and their relatives consistently, which is not one of the commonly reported unmet needs of the patient reported from western countries.,, This finding highlighting the lack of provisions by the government and insurance policies for patients with mental illness in our country.
A key area identified, where more attention given by patients was unmet need in the area of “information about condition and treatment,'' which was reported in one of the previous studies. It shows lack of providing adequate information to patients by mental health professionals might due to workload and shortage of trained personnel to provide appropriate services, suggesting that mental health professionals should pay more attention in giving adequate information to the patients.
Most consistently reported area of unmet need by patients as well as caregivers is psychotic symptoms, which were similar to reports published from western countries.,, This might because even though they are undergone treatment and their symptoms were not completely recovered due to the course of illness. Furthermore, in contrast to the western literature high number of subjects perceived more unmet needs in psychological distress, company, money, and daytime activities where formal services can provide help. It is clear that the health needs of the patients were getting more attention than the needs in services, social and functioning domains. It could be a reflection of state of services for the care of chronically mentally ill patients in health care delivery and nonexistent of social services including social security system in India. Management of those cases mainly comprises prescription of medications and providing psychoeducation about the illness. Rehabilitative needs are not often taken care by the services and left to hand of family to take care of those needs.
Overall, there are discrepancies between patients' and family caregivers' perception of unmet needs in all areas. Thus, it is obvious that the patients and the relatives disagree with regard to unmet needs because of caregiver's feeling of social disgust and their inability to meet most of the needs of the patients, particularly in the areas of money, looking after the home, transport, telephone, and intimate relationships.
Association analysis revealed that more unmet needs were expressed by illiterate patients, patients who had illiterate caregivers, had onset of illness after 25 years of age, had continuous course of illness and contact mental health services more frequently (>1 visit per month). These associations can be easily understood in our sociocultural background where literate patients are able to identify their needs but illiterate family caregivers are unaware of patients' needs and could not provide appropriate help to them. More unmet needs were reported by patients with continuous course of illness, which was contrary to the finding of one previous study  and patients who had onset of illness after 25 years of age reported more unmet needs. It possibly reflects that the patients who had more unmet needs continue to have symptoms and deterioration of condition, whose resilience is also declining as age increases. None of the studies reported these findings.
Unmet needs were expressed by patients who contact mental health services more frequently (>1 visit per month), reflects connection of the residual symptoms and severity of psychopathology with more number of unmet needs. It also suggests that meeting unmet needs may reduce the number of visits and also severity of psychopathology.
The light of above mentioned findings from the present study shows that the patients rely on family and friends for a large amount of help and support in most areas of needs and family and friends should be involved in the care planning process wherever possible. Caregivers may also not have the skills to help out in all the areas and may require assistance from mental health professionals in learning the necessary skills.
The findings of present study have implications for management and psychosocial rehabilitation of the patients. Rehabilitation programs should be planned with the aim of improving social support for the patients of schizophrenia. The government and NGO's need to develop appropriate services focusing on the rehabilitative needs of the patients, provide free treatment and employment opportunities for mentally ill patients and provision of pension schemes which fulfil the need for money and make them independent to meet rest of the needs. There is a need to provide adequate mental health professionals to teach and counsel the caregivers to empower them to appreciate all the needs of the patient accurately so as to act accordingly.
Unmet needs reported in this study are limited to the patients who are seeking treatment from the study setting as limitations of the study were low sample size, convenient sampling method, single study setting, and self-report method of data collection. There is a need to develop protocol for assessment of needs of patients with schizophrenia so that services can be provided according to the patients. These findings also would help to emphasize on the holistic care for the persons with schizophrenia and would enhance the overall well-being of the patients with schizophrenia and in turn treatment outcome of the patients.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]