|Year : 2022 | Volume
| Issue : 2 | Page : 46-50
Mental health status of caregivers of persons with neurological disability
Pallerla Srikanth, Berigai Parthasarathy Nirmala
Department of Psychiatric Social Work, NIMHANS, Bengaluru, Karnataka, India
|Date of Submission||12-Apr-2022|
|Date of Acceptance||29-Jul-2022|
|Date of Web Publication||01-Sep-2022|
Berigai Parthasarathy Nirmala
Department of Psychiatric Social Work, NIMHANS, Hosur Road, Bengaluru - 560 029, Karnataka
Source of Support: None, Conflict of Interest: None
Introduction: Neurological conditions have a long-term impact on the individual and their family and also affect one's general and mental health. Materials and Methods: This cross-sectional study aimed to assess the psychological morbidity among 50 primary caregivers of persons with a neurological disability and was conducted using a self-reporting questionnaire. Results: Most of them were female (64.0%), and predominantly, the caregiver was mother (50.0%). Most of the caregivers have reported felt nervous, tense, or worried during hospitalization (76.0%); felt unhappy during caregiving (86.0%); and faced difficulty to enjoy daily activities (74.0%). In addition to that, (98.0%) caregiver's have reported that their day to day work suffered, (70.0%) were unable to play a usual part in life. Conclusion: The study would highlight the need for screening the mental health of the caregivers of persons with neurological disabilities.
Keywords: Mental health, neurological disability, psychological distress
|How to cite this article:|
Srikanth P, Nirmala BP. Mental health status of caregivers of persons with neurological disability. J Neurobehav Sci 2022;9:46-50
| Introduction|| |
Neurological disorders constitutes 6.3% of the total disability adjusted life years and this trend is projected to increase to 6.77 in 2030. Which have become significant causes of disability and death worldwide. In India, the average prevalence rate of common neurological disorders is 2394 and ranges from 967 to 4070/100,000 population. Mental health issues are proportionately increasing worldwide and have become a global challenge; over 450 million people are suffering from some of the mental or behavioral disorders worldwide. In India, as per the NIMHANS Mental Health Survey, the overall weighted prevalence of mental morbidity was 10.6% for current and 13.7% for lifetimes.
Neurological conditions have a long-term impact on the individual and their family. Having a neurological condition affects one's general health and mental health, leads to stigmatization, causes impairments of functions, affects the quality of life, and contributes to financial security. Over time, the condition of the neurological disabilities will worsen as they produce various symptoms and functional impairments that often increase demands on informal caregivers. The patients are completely dependent on the caregiver for their activities of daily living such as bowel and bladder functions, transfers, locomotor, and self-care; caregiver issues are last to be attended both by the family members and the treating team.
Family members and friends are the major sources of informal caregivers to provide care to the person with a neurological disability living in the community.,, The role of caregiving is an indispensable factor to support a person with a neurological disability to provide support to them. The caregiver burden and their psychological distress are the identified risk factors; this has been recommended to address the caregiver burden and distress involved in the care of persons with neurological disabilities. It is a well-known fact that the family members are affected by the patient's illness. Most of the studies have demonstrated that burden and distress are the two negative consequences due to the role of caregiving by the informal caregiver to the person with neurological disability.,,
The amount of time spent in providing care to the care recipient is directly proportional to caregiver distress., Psychological distress was very high among family caregivers among persons with dementia. Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. It is imperative to study the psychological well-being of these caregivers. In the Indian setting, fewer studies have looked into identifying the impact of caregiving provided by informal caregivers to persons with neurological disabilities. The current study aims to identify the level of psychological distress among the informal caregivers of persons with neurological disorders emphasising the need for long-term clinical interventions.
| Materials and Methods|| |
The study was conducted as part of Caregivers support and education programme for Neuro rehabilitation from April 2017 to December 2017.
A total of 50 primary caregivers of persons with a neurological disability were included in the current study. It was a cross-sectional, hospital-based study with an explorative design. The data were collected from all admitted patients to the department of neurological rehabilitation. Patients with complete information were included in the study. Patients with incomplete information were excluded from the study. The data that were recorded consisted of the sociodemographic profile and clinical profile of the patients. Only those caregivers who are above 18 years, staying with the patient in the hospital and at the home, intensively involved in bringing the patient for treatment, follow-up, and medications were included in the study. Paid caregivers were excluded from the study; informed consent was obtained to participate in the study. A self-reporting questionnaire (SRQ) (World Health Organization [WHO] 1994) was used to assess depressive symptoms, anxiety, and psychosomatic complaints.
This was a 20-item questionnaire to obtain information on psychological distress, which was developed by the WHO-SRQ 20, 1994. The complete SRQ consisted of 25 questions, which have to be answered by “yes” or “no.” Of these 25 questions, 20 were related to neurotic symptoms, 4 to psychotic symptoms, and 1 to convulsions. The SRQ-20 consisted of the neurotic items; these revealed depressive symptoms, anxiety, and psychosomatic complaints and detected probable cases of common mental disorders with reasonable accuracy. After obtaining written informed consent from the participants, the interview schedule and SR20 were administered. After managing data properly, it was analyzed using SPSS (Statistical Package for the Social Sciences, International Business Machines, Armonk, New York, United States) 16 version and Microsoft Excel Software 2007 version and presented along with an intervention framework designed to reduce psychological distress.
| Results|| |
Persons with neurological illness (n = 50) were admitted to the neurorehabilitation ward for 6 months. The clinical profile of the person with neurological illness included Guillain–Barre syndrome (22%), myelopathy (6%), stroke (8%), transverse myelitis (4%), traumatic brain injury (8%), spinal cord injury (10%), postinfectious myelitis (2%), paraplegia (4%), and other neurological conditions (36%).
[Table 1] shows that the total sample consisted of 50 caregivers, among these 32 (64.0%) were females, 18 (36.0%) were males, they were predominantly in the age group of 31–40 (26.0%), 30 (60.0%) were coming from the nuclear family, 36 (72.0%) were having BPL card status. Most of the time, it is mother 25 (50.0%) who was staying with the patient in the ward, she happened to be the main caregiver. These caregivers were taking care of the patients all through the illness at home and in the hospital; the highest duration of illness was 2–6 months (44.0%).
[Table 2] shows the item-wise analysis of the psychological distress of caregivers. The table shows that (44.0%) of the respondents reported that they have frequent headaches, (54.0%) suffered from poor appetite, (50.0%) disturbed sleep or sleep disturbances, (44.0%) were easily frightened, (36.0%) had tremors, (76.0%) were felt nervous during hospitalization, (86.0%) experienced unhappy during caregiving, (46.0%) cried more than usual, and (74.0%) faced difficulty to enjoy of daily activities. (98.0%) caregiver's have reported that their day to day work suffered, (70.0%) were unable to play a usual part in life, (60.0%) lost in interest, (52.0%) felt tired in all the time, and (52.0%) felt easily tired.
|Table 2: Psychological distress (Self-reporting Questionnaire) 20-item analysis|
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| Discussion|| |
The impact of the neurological conditions on the affected individuals and their families is high and the person with a neurological disability living in the community requires high support and care by the informal caregivers. In India, the family is the first point of contact to provide care to the patient. All the 24 h of a day, and 7 days in a week, the family spends a large amount of time, energy, and resources in looking after the patient as part of caregiving; hence, it would negatively impact their mental health. The majority of the care comes from the informal caregivers to the person with neurological disabilities. In the current study, it was reported that almost all caregivers of persons with a neurological disability experienced a high level of distress during the hospitalization with a mean score of 25.55 ± 4.69. A cross-sectional study from Canada has reported that a significant proportion of informal caregivers of persons diagnosed with neurological conditions have experienced distress. The community-based study conducted from Fiji also found that the role of caregiving was adversely affected on the psychological well-being of the caregivers of persons with spinal cord injury. Another study entitled, “Quality of Life and Psychological Distress of Caregivers of Stroke People,” also stated that domains of physical and mental health were highly negatively correlated with anxiety (r = 0.56) and depression (r = 0.59) among caregivers of persons diagnosed with stroke. Other research studies from across the globe have found that caregiver's burden was positively correlated with depression (r = 0.124, P ≤ 0.01, and anxiety (r = 0.124, P ≤ 0.05), and caregivers of PwNC found to be at higher risk of mental health problems, High levels of psychological distress,, and caregivers of persons with AD have reported higher caregiver burden which is in line with our study.
A cross sectional study from Portugal has suggested that behavioural and psychological symptoms in dementia, neuroticism of the patients is associated with the distress levels of their caregivers. Studies have confirmed that caregivers of people diagnosed with dementia will have the continuation of depression, anxiety, and sleep disturbances for as long as 10 years postcaregiving., Patient's neuropsychiatric symptoms are associated with increased levels of burden and psychological distress in caregivers of people with dementia, apathy and disinhibition, sleep disturbances, and lack of initiative. In line with the above findings, half of the study participants (n = 25) have reported issues related to their sleep. In the current study, most of the caregivers were female (n = 32) and above 40 years of age (n = 33); a recent study found that being female and age between 50 and 70 years were the determinants for higher psychological distress among caregivers of patients with dementia.
In the present study, it was shown that most of the CGs of PwNC have reported that they feel tired all the time (n = 26) and difficult to enjoy their daily activities (n = 37). There is a directly proportional relationship between the amount of time spent providing care to the care recipients and caregiver distress, i.e., as the caregiving time increases, caregiver distress will also increase., Almost all of the participants (n = 49) have stated that due to their caregiving role, they have found difficult to enjoy their daily work activities. Studies have demonstrated that the role of caregiving will affect their ability to make rational decisions;, n = 19 caregivers have reported the same in the present study.
Caregivers often need to take up new tasks that they are not trained to do. They neglect their own health by investing immense time, energy in taking care of the patient, spend lot of money for the treatment, take up flexible jobs or sometimes even give up jobs for caregiving. They even limit their social participation, so that they are all the time with the patient. As they are at risk to develop mental health issues such as anxiety and depression, an Indian study has demonstrated that the majority of the caregivers of persons with chronic terminal illness had severe levels of anxiety and 96% of them have had some degree of depression. Family caregivers may benefit from an educational plan that includes helping them to develop the skills they need to communicate their problems and concerns better. Often caregivers have to do decision making on several issues and they have expressed their concerns that they are not able to think clearly (n=22). A study from the USA has recommended that providing psychosocial support will help the caregivers to reduce their burden and distress levels.
Family caregivers provide extraordinary uncompensated care involving significant amounts of time and energy for months or years and require the performance of tasks that were often physically, emotionally, socially, or financially demanding. They are constantly challenged to solve problems and make decisions as care needs change, yet they feel untrained and unprepared as they struggle to adjust to new roles and responsibilities. As the caregivers prioritize patient's needs, their own needs often get marginalized. The caregiver information needs are ever-emerging; they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. Pakenham has reported that emotion-focused coping and perceived uncertainty were associated with distress for caregivers. Dementia caregiver's stress related psychological symptoms, and sleep disturbances that emerged during caregiving are long term in nature and difficult to be resolved. Many caregivers (n = 38) in this study have conveyed that they were worried/nervous during the caregiving process. Psychological distress and sleep quality are long-term outcomes of the stress process.
When it applies to the context of caregiving factors, studies have concluded that various factors such as personality traits and coping have an influence on the caregiver distress levels. Kristin and Mary have stated in their research the impact of caregiving on long-term psychological outcomes among dementia caregivers. Identifying and understanding the risk factors of the informal caregivers, caregiving burden and psychological distress will assist in the development of interventions and appropriate support strategies, which will directly help the caregiver, care recipient, and health-care systems. In summary, the current study findings demonstrated the mental health status of the caregivers of persons with neurological disabilities.
| Conclusion|| |
Neurological conditions have a long-term impact on the individuals and their family and require a long time of exhaustive caregiving. Most informal caregivers such as family members and friends have reported a high amount of burden and distress. It is obligatory to identify the risk factors of the burden and distress to develop the interventions and provide appropriate support strategies, which will directly help the caregiver, care recipient, and health-care systems. The study would highlight the need for screening the mental health of the caregivers of persons with a neurological disability.
Patient informed consent
Patient informed consent was obtained.
Ethics committee approval
The study was conducted as part of Caregivers support and education programme for Neuro rehabilitation from April 2017 to December 2017.
Financial support and sponsorship
Funded received by Dr Ramachandra N Moorthy foundation for Mental health and Neurological sciences.
Conflicts of interest
There are no conflicts of interest to declare.
Author contribution subject and rate
- Srikanth Pallerla (50%): Contributed to writing a manuscript draft, literature search.
- Berigai Parthasarathy Nirmala (50%): Contributed to writing a manuscript draft, review of the manuscript.
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[Table 1], [Table 2]