|Year : 2021 | Volume
| Issue : 4 | Page : 437-445
Felt needs of the caregivers for the home based care for their family members with severe mental illnesses
Deepika Kartikeyan1, Gobinda Majhi1, Vijay K G. Kumar2
1 Department of Psychiatric Social Work, NIMHANS, Bengaluru, Karnataka, India
2 Department of Psychiatry, NIMHANS, Bengaluru, Karnataka, India
|Date of Submission||18-Nov-2020|
|Date of Decision||17-May-2021|
|Date of Acceptance||27-Jun-2021|
|Date of Web Publication||25-Nov-2021|
Associate Professor, Department of Psychiatric Social Work, NIMHANS, Bangalore- 560029, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Home-based care for persons with severe mental illness is a family-focused approach and addresses the caregiver's responsibility. It is cost-effective compared to the inpatient hospital settings, and it also allows the patients to stay with families in their communities while treatment is going on. In this context, this study aimed to explore the barrier to access mental health services and the caregivers' felt needs for home-based care for their family members with severe mental illness. Methods: This study adopted a cross-sectional descriptive design with 60 caregivers of family members with severe mental illnesses. Quantitative data were collected through a semi-structured interview schedule prepared and validated for this study, and the severity of illness was measured using the Clinical Global Impression Scale. Results: Caregivers faced difficulty in traveling along with their family members to the hospital for treatment (76.7%), accessibility issues (65%), and problems in mobilizing the patient to the hospital (54%). The majority of the caregivers (75%) preferred home-based care to manage the illness of the patient, with a focus on pharmacotherapy (83.3%), and the patient considered there should be appropriate training at home (63.3%). Conclusion: The majority of the caregivers felt the need for home-based care with a preference for both pharmacotherapy and self-care for their family members with severe mental illnesses.
Keywords: Barriers, caregivers, felt needs, home-based care, institutional care, mental illness
|How to cite this article:|
Kartikeyan D, Majhi G, Kumar VK. Felt needs of the caregivers for the home based care for their family members with severe mental illnesses. Indian J Soc Psychiatry 2021;37:437-45
|How to cite this URL:|
Kartikeyan D, Majhi G, Kumar VK. Felt needs of the caregivers for the home based care for their family members with severe mental illnesses. Indian J Soc Psychiatry [serial online] 2021 [cited 2022 Oct 6];37:437-45. Available from: https://www.indjsp.org/text.asp?2021/37/4/437/331137
| Introduction|| |
In India, more than 70% of the population lives in villages (Census, 2011). As per the National Mental Health Survey (2015–2016), the lifetime prevalence of mental disorders in the Indian population is 13.7%, including severe mental disorders such as schizophrenia and psychoses (0.64%) and mood disorders (5.6%). As severe mental illness is a debilitating condition that affects daily activities, social interaction, and impairment in decision-making, it requires continuous treatment. However, most often, the available services are expensive and cumbersome and are limited to larger cities and hospitals.
People with severe mental illness need optimum treatments and appropriate plans to avoid repeated readmissions. Despite optimal treatment, many persons with severe mental illness still relapse. Hence, a large number of psychiatric patients require continued care and recurrent readmissions. In this regard, caregivers find it very difficult to bring the patients to the hospital even if they could afford it. The situation sometimes can also lead to nonadherence with medications and relapse or worsening of the symptoms. Hence, caregivers of the mentally ill undergo distress and burden. These issues become more complex when the patient or the family lives in a remote or rural area because they encounter barriers such as lack of transportation, poor health literacy, socioeconomic adversities, and stigma associated with mental illness, In this regard, appropriate health-care service must be available which is affordable to all sections of society regardless of age, sex, social status, geographical area, and ethnicity. The health-care system is a complex entity, particularly in India, where there is a lack of resources, personnel, and services which further complicates the system.,, This state of affairs further deprives people of quality mental health care.
There is a need for improvement in health-care service delivery. It can be achieved by redirecting the existing resources toward services with reasonable, cost-effective, promising outcomes benefiting a large population. In this regard, the delivery of mental health services through home-based care is a good alternative. Home-based treatment services for persons with severe mental illness are a family-focused approach which is an alternative to hospital treatment. It is an intensive and integrated approach to treat severe psychiatric conditions. Family members can promote the quality and safety of mental health services if they are involved in such services. They can enhance emotional, physical demands and mitigate financial expenses as caregivers for someone with a mental illness. Since family members share the significant responsibility for providing care to people with mental illnesses,, their felt needs in accessing mental health-care facilities and strengthening family-based care are essential. Nonetheless, there is a gap in the literature from Indian settings concerning home-based care to explain the success and challenges in home-based care. Therefore, this study was conducted to explore the barrier to access mental health services and the caregivers' felt needs for home-based care for their family members with severe mental illness.
| Methods|| |
This study followed a quantitative method with a cross-sectional descriptive research design. We used the purposive sampling method to recruits the participants. The study was conducted at the National Institute of Mental Health and Neuro Sciences (NIMHANS), a tertiary care psychiatric hospital in Bengaluru, India, from January to December 2019. Ethical clearance was obtained from the NIMHANS Ethics Committee to carry out this study. After obtaining the informed consent, caregivers and patients with an ICD-10 diagnosis of criteria of schizophrenia and bipolar affective disorder were selected. Inclusion criteria made for the present study were caregivers and patients who were above 18 years of age. Caregivers who can speak English, Kannada, and Tamil were included in the study. Demographic details and clinical data were collected from the respondent. Clinical Global Impression Scale was used to measure the severity of illness. A semi-structured interview schedule was used to assess the perceived barrier to access mental health services and the felt needs of the caregivers for home-based care.
- Sociodemographic and Clinical Data Sheet: The sociodemographic data sheet consisting of both open-ended and closed-ended questions was used to get the relevant demographic and clinical details
- Clinical Global Impression Scale: This instrument was administered to identify the symptom severity and functional improvement of the patient. This scale is found to be useful in the Indian Clinical Population
- Semi-structured Interview Schedule on barriers to access treatment, caregiver's knowledge, and their needs for home-based care: This schedule consists of both open-ended and closed ended questions that focused on the domains such as accessing the treatment, availability of social support, emotional support, and financial support, knowledge about the illness of the patient, and the needs of the caregivers for home-based treatment.
Statistical Package for Social Sciences for Windows (SPSS 21.0, IBM) (IBM Corp. Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM Corp.) was utilized for the data analysis. All the responses under barriers in accessing treatment and the domains are clubbed into one. Similarly, all responses under the need for home-based care domains were combined into one. There were three groups in the family type such as nuclear family, joint family, and extended family; however, the last category was excluded from the final analysis because of insufficient data. In addition, the group with the duration of illness over 20 years was eliminated from the final analysis due to the low subsample. The level of significance was set at a P < 0.05 to describe the statistics.
| Results|| |
Sociodemographic variables of the caregivers and clinical characteristics of the patients are given in [Table 1]. The majority of the caregivers were 40–60 years old (43.3%), females (58.3%), married (80%), illiterates (28. 3%), and had a family income of up to INR 25,000 per annum (40%). The majority of the caregivers were patients' mothers (31.7%) and nuclear families (63%). The majority of the patients were 21–30 years old (40%), completed high school (46%), diagnosis of schizophrenia (68%), had inpatient admissions for 0–2 times (75%), illness duration of 1–10 years (61.7%), noncompliant for pharmacotherapy (78%), and only attained moderate improvement (41.7%).
[Table 2] presents the barrier to access treatment and availing support (instrumental, emotional, and financial support). The majority of the caregivers had traveling difficulty to avail of hospital treatment (76.7%) and experienced challenges to bring the patient due to their symptoms (54%). The majority of the caregivers get family member's support to access the treatment (81.3%), to bring the patient for treatment (66.7%), and to take care of the patient during their absence (63.3%). However, 76.7% of the caregiver's friends did not provide social support. The majority of the caregivers have someone to talk to and share feelings with 76.7% and family members to provide adequate emotional support (58.3%). This table also reveals that the majority of the caregivers get sufficient financial support from extended family members (61.7%) and took loan for patient's psychiatric treatment (51.7%). Similarly, 63.3% and 51.7% of the caregivers are a sole earning member in the family and their efficacy of work is affected due to the patient's illness, respectively. However, 90% of them have not received any financial support from friends.
|Table 2: Caregiver's responses toward availing support and barriers to access treatment|
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[Table 3] represents the caregiver's knowledge about the illness and their perceived needs. The majority of the caregivers are aware that patients got affected by a chronic illness (68.3%); patient's illness can be cured with medication or other treatment modalities (53.3%), and patients need medication for a more extended period (60%). Majority of the respondents were neither aware of the District Mental Health Programme (DMHP) services (68.3%) nor accessed DMHP services (78.3%).
The majority of caregivers were unaware of any home-based management strategies (90%) and government welfare benefits available to mental illness (91.7%). This table also implies that most caregivers felt it difficult to manage patients during the symptomatic time (93.3%) and have not received any training for it (98.7%). Likewise, 75% of the caregivers felt that they need home training to manage the patient. In terms of home-based treatment, the majority of the caregivers felt that patients need pharmacotherapy (83.3%), training to manage himself/herself (63.3%), and job training (56.7%) at their home. However, 60% of the caregivers reported that the patient does not require training to improve his attention, problem-solving skills, and decision-making skills.
[Table 4] reveals a significant association between the number of admissions and the need for home training for the patient to manage themselves (χ2 = 4.69; df = 1; P < 0.05), there exists a significant association between sex distribution of the caregiver and their need for home training to manage the patient (χ2 = 5.14; df = 1; P < 0.05). Concerning the annual family income, it shared a significant association with the loan taken for the treatment expenditure (χ2 = 13.92; df = 3; P < 0.05), association between the caregiver's age with worsening of the caregiver's health while accompanying the patient for hospital treatment (χ2 = 18.64; df = 2; P < 0.05), perceived impact on own health (χ2 = 13.98; df = 2; P < 0.05), feelings of loneliness and isolation due to the patient's illness (χ2 = 8.22; df = 2;P < 0.05), and expenditure (e.g., food, travel, and accommodation) to avail the hospital treatment (χ2 = 11.49; df = 2; P < 0.05) There shows a significant association between family income and caregiver's need for pharmacotherapy to the patient at home (χ2 = 9.274; df = 3; P < 0.05).
[Table 5] implies the difference between specific variables. For example, there is a significant difference between the caregivers' need for home-based treatment and the type of family they come from (U = 215.0; P < 0.01) but not about the duration of mental illness in the ward (U = 229.5; P value not significant).
|Table 5: Difference between barriers in accessing treatment and family type and the need for home-based care and duration of illness|
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| Discussion|| |
This study aimed to assess the felt needs of the caregivers for home-based care for their family members with severe mental illness in the context of the barrier they experience in accessing hospital-based mental health services. Those with severe mental illnesses were young adults, and the majority of them were female, a finding supported by mental health survey, NMHS2015-16. As far as caregivers are concerned, 43.3% were 40–60 years old, and 58.3% were females, of which 31.7% were mothers. It may be because, in a traditional Indian family, the mother's role has traditionally been taking care of household chores, looking after family members at the time of distress and disease conditions.,,,, Moreover, study findings also show “revolving door” patterns of admission where recurrence readmissions are prominent. Similar characteristics reported in previous studies, such as persons diagnosed with schizophrenia and other social and clinical factors, lead to frequent re-hospitalization. Therefore, to prevent recurrent psychotic episodes and re-hospitalization, there is a need to identify modifiable prognostic factors. Considering the pressure on inpatient services, a specific home-based intervention model is required to reduce the prevalence of recidivism.
Most of the participants were below the poverty line. In terms of family type, the majority (63%) belong to the nuclear family. Both the income parameters and the type of family suggest that the caregivers had resource constraints, both financially and the number of people available for caregiving. The caregivers were middle aged, who had to take care of a family member with severe mental illnesses. In contrast, in ordinary circumstances, the young adult would have been independent and cared for the family. Thus, the families are deprived of a productive member and had to make necessary adjustments in their daily life to provide care to a family member with a psychiatric illness. In such a situation, family caregivers risk their health and quality of life.,, Research studies reported caregivers' risk for fatigue and sleep disturbance continuing with such a situation would making it harder to bounce back with each new set of caregiving responsibilities. Therefore, the cohesive framework of respite interventions broadly represents therapeutic strategies, and services directed to support family caregivers are essential. In particular circumstances like marriage, death, and other family emergencies, respite care is vital. Furthermore, teaching caregivers how to manage specific patient problems can improve the caregiver's quality of life and well-being.
The caregivers in the present study were well aware of the need for professional mental health care, but 68.3% of them were not aware of the DMHP. The majority were unaware of the welfare schemes and social benefits provided to persons with a psychiatric disability or heard about the home-based management facilities for the same. In the present study, 61.7% of the caregivers got financial support from the other family members to handle the treatment expenses. However, more than half of the caregivers had taken loans or debt to manage the expenditures for psychiatric treatment. The research finding shows that caregivers have the most significant risk of economic harm because of out-of-pocket costs for care recipient needs and caregiving obligations. The family has to incur an additional financial burden which grapples in because of a new role as caregiver. Economic constraints are a significant barrier in accessing mental health care and create a negative experience of caregiving. Therefore, social security benefits must be considered to buffer the financial burden among the caregivers and promote positive coping.
The majority of the patients in this study had a diagnosis of schizophrenia (68%), with up to two inpatient admissions (75%) and a history of noncompliance to medication (78%) which are identified in the literature as potential risk factors for treatment discontinuity in psychotic patients. In such a scenario, it is understandable that the caregivers would like to admit the patient to the hospital, reduce the treatment cost, and avoid the expensive episodic treatment. However, the caregivers had to depend on the social support of the informal system such as family members (70%) and minimally from the secondary level such as friends and neighbors (23.3%). The same trend continued for emotional support and instrumental support, with family (58.3%) and friends (28.3%) lending necessary support. This finding is similar to previous studies.
The majority of the caregivers were from nonurban settings and had difficulty traveling from their locality to tertiary psychiatric facilities. As earlier studies have found, people in rural areas have difficulties in accessing psychiatric facilities. In our findings, 65% of the caregivers have encountered barriers in accessing hospital services. As they informed, their health condition also deteriorates while accompanying and repeatedly traveling to the psychiatric hospitals. The waiting period for the consultation on the appointment day is also a significant deterrent for availing hospital based mental health care. Most of the caregivers (90%) had experienced various challenges in bringing the family member with psychiatric disorders for the center-based services. Similar observations were also made in other countries.
The majority of the caregivers in this study have felt that they are spending more money to seek psychiatric hospital treatment for their affected family members on a regular and long-term basis. The out-of-pocket expenditure includes direct and indirect costs for the treatment such as medications, traveling charges, food expenses, and accommodation to avail the hospital treatment far from their locality. According to a survey of the economic burden of noncommunicable disease in India 1995-96 and 2004, the economic burden is a determining factor in accessing center-based mental health facilities.,
Most of the caregivers in the current study have found it challenging to manage their affected family members during the symptomatic period, while all of them were satisfied with the center-based treatment. In this context, the caregivers expressed the need for home treatment because of the increased sense of burden. They also described the need for caregiver training to help the patients lead an independent life and gainful occupation. (56.7%). These findings are similar to previous studies.,,, In the present study, caregivers of persons with schizophrenia had a higher burden than the caregivers of individuals with BPAD., When patients improve on pharmacological treatment, caregivers may not see the need to continue with the centre-based, follow-up. The caregivers felt the need for home-based treatment because of the difficulties in traveling to far-off places for treatment, financial constraints, lack of awareness about regular programs such as the DMHP's, and a misconception that the treatment is not needed when the condition improves. In this direction, caregivers need proper advocacy, a local network, and adequate resources to deal with patients effectively in the home care settings. Alternatively, India may have to adopt case management programs as run-in western countries to help ease this transition of support caregivers. Preferably, those trained in dealing with severe mental illness have a crucial role in managing severe mental illness in community settings. Linking caregivers to resources throughout the disease trajectory is vital because caregivers are often unaware that support services are available to help them.
Caregivers have a significant role in caring for and managing persons with mental illness. They have to provide financial support and incurred the burden of economic difficulties consistent with a previous report. The annual income of the family is found to be significantly associated with the caregiver's need for pharmacotherapy for the patient at home (P < 0.05). Similarly, schizophrenia diagnosis and the number of inpatient admissions but not the duration of illness positively correlated with the caregiver's need for home training to handle the patient at home. Nonetheless, caregivers of the family members with severe mental illness will experience moderate to high levels of burden,,,,, and need practical support, social support, economic support to provide care to people with severe mental illnesses. Therefore, they require professional home-based training where individuals with severe mental illness can learn, perform, or practicing the skills in relevant situations.,, The felt need for home-based treatment was high if the caregivers are older or from nuclear families and mothers. These findings are in agreement with the previous studies. However, in Indian settings, caregivers draw support mainly from family members because of cohesion and solidarity during difficult times.
There are some limitations of the study – only those who came to the outpatient department were recruited, and the sample size was small. Therefore, it will limit generalizing the findings.
| Conclusion|| |
Home-based care is preferred by caregivers of severe mental disorders. The reasons for this are the treatment that is long, expensive, and highly urban centric. It is also very expensive and access to transportation is difficult for rural communities to approach the psychiatric hospital. Hence, there is a need for a comprehensive care model in the community where a family member can be part of treatment, essential drugs should be supplied by the government without interruption so that adherence of drug compliance can be maintained and prevent the relapse, trained professional should be deputed in community level and minimal training should be provided to paramedical staff and family members to deal with mental illness. And there should be a strong link between mental health services and other government welfare departments where the needs of mentally ill people can be addressed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]