Informal caregivers of people with a diagnosis of schizophrenia: determinants and predictors of resilience

Abstract

Background

The extant literature portrays informal caregiving by family members who care for a person with a diagnosis of schizophrenia, as one that involves a tremendous amount of stress and burden.

Aim

This investigation sought to assess informal caregiving experience with regard to variables such as perceived positive aspects, preparedness, resilience, and life satisfaction.

Method

Data was collected from two groups of respondents accessing services at the Thanjavur Medical College Hospital, Tamil Nadu, India. The study group consisted of 75 family caregivers of persons with a diagnosis of schizophrenia and the reference group had an equal number of caregivers of people with minor physical ailments. The two groups were matched on important background factors, ensuring their comparability. Standardised instruments were administered to all respondents to collect data pertaining to the key variables and analysed using appropriate statistical procedures.

Results

Results indicated that caregivers of people with a diagnosis of schizophrenia, while manifesting higher levels of resilience, perceived lesser positive aspects in their caring role. A significant statistical difference between both groups of respondents in terms of their life satisfaction and resilience. Regression analyses extracted preparedness and life satisfaction as significant contributors to the manifestation of resilience in the caregivers.

Conclusions

The study highlights the importance of caregiver preparedness and life satisfaction in enhancing their resilience.

Keywords:

• Informal caregivers
• caregiving in schizophrenia
• resilience
• life satisfaction
• positive aspects of caregiving
• caregiving preparedness

Introduction

Schizophrenia is a major mental disorder, or group of disorders that involves a complex set of disturbances of thinking, perception, affect and social behaviour (World Health Organisation [WHO], 1998). Given the functional deficits that accompany the illness, the issue of caregiving becomes significant in enabling people with a diagnosis of schizophrenia (PWS) to negotiate challenges encountered in daily living. Informal (family) caregivers include parents, spouses, siblings, friends, and neighbours who on an unpaid basis discharge the caregiving function owing to a pre-existing relationship and a sense of responsibility towards the person being cared for. Given the strong family ties in Indian society, informal caregiving is often a function performed by parents and spouses in line with religious and cultural norms and expectations. The Indian tradition of interdependence and concern for near and dear ones in adversities coupled with the paucity of trained mental health professionals to cater to a large population are twin reasons for families to be involved with the caregiving of mentally ill dependants (Avasthi, 2010).

There is a huge body of international literature that deals with the heightened burden of care and diminished quality of life experienced by family caregivers of PWS (Flyckt et al., 2013; Ong et al., 2016; Ribé et al., 2018). Caregivers of PWS may experience psychological morbidity, social isolation, impaired physical health, and financial difficulties (Chang & Horrocks, 2006). Psychological distress owing to depression, stress, anxiety (Wan & Wong, 2019), and loneliness (Lok & Kerime, 2018) have been reported by informal caregivers besides exhaustion, grief reactions, and sleep disturbances (Smith et al., 2019). Findings of an earlier study from India revealed that the majority of spouses of people with psychotic illness were classified as being “severe” and “extremely severe” in terms of their depression, anxiety, and stress levels and “high” in terms of perceived burden (Stanley et al., 2016).

Against this background, the issue of caregiver resilience becomes important. A scoping paper that reviewed 42 studies of informal caregiving, identifies resilience as an important protective factor in mitigating the burdens of carers (Zhao et al., 2016). Previous studies have established correlational links between resilience and quality of life in caregivers of PWS (Jain & Singh, 2014). Acceptance, hardiness, hope, mastery, self-efficacy, sense of coherence, and resourcefulness are some attributes identified as being indicators of caregivers’ resilience (Zauszniewski et al., 2010).

While caregivers discharge an extremely important function, they often feel unprepared for performing their role and lack the requisite knowledge and skills (Schumacher et al., 2006) and report feeling ill-prepared to discharge their caregiving function (Ducharme et al., 2011). Caregiver’s preparedness has been defined as their perceived readiness for the caregiving role, which encompasses multiple domains, including provision of physical care, emotional and instrumental support (Schumacher et al., 1998). Mason and Hodgkin (2019) observe that caregivers frequently deal with issues that are unknown relating to a lack of knowledge and necessary skills, prognostic communication from service providers, fear, exclusion, emotional distress, and grief experiences. Most of the literature dealing with caregivers’ preparedness has explored this issue in the context of terminal illness (e.g. Schumacher et al., 2007) or the care of older people (e.g. Harvath et al., 2018). We were hence interested in expanding the literature pertaining to this aspect in the context of caregiving in schizophrenia.

Caregiving for a person with schizophrenia has a tremendous impact on the caregiver's life both negatively and positively (Tungpunkom et al., 2013). While the bulk of the literature has focussed on the negative aspects, it is also true that many caregivers see positives that derive from their caregiving function and experience. Positive aspects of caregiving refer to the rewards and satisfaction that emerges from the caregiving relationship (Tarlow et al., 2004). The manifestation of hope and the availability of social support have been identified as key determinants of the perception of positive rewards in discharging the caregiving function (Stanley & Balakrishnan, 2021). Caregiver satisfaction is a key positive aspect of caregiving that provides a sense of feeling fulfilled, important, and responsible, besides providing a sense of companionship, and meaning within the relationship (Cohen et al., 2002). It has also been reported that such positive experiences occurred less frequently but temporarily buffered against negative aspects experienced in the caregiving process (Mason & Hodgkin, 2019) and have been associated with better quality of life in caregivers (Kate et al., 2013).

Against the background of this review, the current study was framed to answer the following questions:

1. What is the sense of preparedness felt by caregivers of persons with schizophrenia and the extent to which they perceive positive aspects related to their caregiving role?

2. What is the extent of life satisfaction and resilience manifested in these caregivers?

3. How do background factors such as gender (of caregiver and recipient) and relationship status (parent or spouse) influence the key variables of this study?

4. To what extent do preparedness, perception of positive aspects and life satisfaction influence caregiver resilience?

Material and methods

Measures

The Preparedness for Caregiving Scale was developed by Archbold et al. (1990) and assesses caregivers’ readiness to provide care. The scale consists of eight items; each responded to on a five-point Likert-type scale ranging from not at all prepared (0) to very well prepared (4). A total score ranging from 0 to 32 is calculated by summing the responses for all items, with a higher score indicating more feelings of preparedness. Scale reliability was estimated by computing Cronbach’s alpha (α = 0.96) and indicated “excellent” reliability (George and Mallery, 2003).

Positive Aspects of Caregiving Scale is a 9-item scale (Tarlow, 2004) that assesses two dimensions namely, Self-Affirmation and Outlook on Life, with each item being scored on a 5-point Likert scale. The overall score, comprising all nine items, ranges from 9 to 45, and a higher score reflects a more positive perception of the caregiving experience. The Cronbach’s alpha in the present study was 0.72 which indicates an “acceptable” extent of reliability (George & Mallery, 2003).

The Satisfaction with Life Scale by Diener et al. (1985) is a 5-item scale designed to measure global cognitive judgments of one’s life satisfaction. Participants indicate how much they agree or disagree with each of the 5 items using a 7-point scale that ranges from 7-strongly agree to 1-strongly disagree. The alpha value computed in this study was 0.78 which is an “acceptable” indicator of scale reliability (George & Mallery, 2003).

Brief Resilience Scale by Smith et al (2008) provides a composite measure of self-reported resilience. It is a six-item instrument with items rated on a 5-point Likert scale with responses ranging from strongly agree to strongly disagree. High scores indicate higher resilience. The Cronbach’s alpha in the present study was 0.74 which indicates an “acceptable” extent of reliability (George & Mallery, 2003).

Study design

The study used a cross-sectional design and survey methodology for data collection. The data was generated through self-reports of the respondents. The study is comparative in nature as caregivers of PWS (study group-SG) have been contrasted with a similar group of caregivers drawn from the General Medicine department (reference group-RG).

Setting for the study

The Thanjavur Medical College Hospital established in 1964, is a multi-speciality postgraduate institution attached to the Thanjavur Medical College. It caters predominantly to the rural population in and around Thanjavur district, in Tamilnadu, the southernmost state of India. The clientele for the hospital draws mostly from the adjoining rural areas and as the institution is run by the Government, is immensely popular owing to the provision of high quality subsidised medical services and facilities.

Ethical considerations

The protocol for the study was cleared by the “Institutional Ethical Committee” of Thanjavur Medical College (192/2018) prior to data collection. Informed consent was sought from prospective respondents after explaining the nature of the study. They were told that they could drop out of the study at any point and their decision would in no way influence the services being received from the institution. Participation was voluntary and no personal identifying data was collected, and no follow-up contacts made with respondents following data collection.

Data collection

Data for the caregivers of PWS (Study Group – SG) were collected in the Department of Psychiatry of the hospital and the carers of the reference group (RG) from the General Medicine Department. Seventy-five consecutive caregivers of patients who approached both departments for treatment were included as respondents. The caregivers of patients from the General Medicine department were included only as a reference group to enable statistical comparison on the attributes being studied. They were seeking treatment for a range of general health conditions such as fever, diarrhoea, body pain, vomiting etc. Data were collected by the second author after explaining the purpose of the study and soliciting voluntary participation of the caregivers.

Statistical analyses

SPSS version 23 was used for data analysis. Student t-tests were used to compare respondents of the study and reference group to ascertain differences if any on the key variables of the study. T-tests also enabled us to make between-group comparisons of respondents on categorical variables such as gender, marital status, and relationship with the care recipients. Pearson’s correlation coefficients were computed to establish the statistical relationship among quantitative variables. Multiple regression analysis was used to identify predictors of resilience in the caregivers of the study group respondents and AMOS enabled the generation of a path diagram.

Results

Respondents’ profile

Key background information pertaining to respondents of both groups is depicted in Table 1. Comparisons based on the care recipients’ age using t-tests, did not indicate any statistically significant difference between both groups. Similarly, no significant differences were seen based on the age of the caregivers of both groups as well as their monthly income. Chi-square tests were performed for qualitative variables such as care recipients’ gender, their religion and marital status, revealing no statistical difference on these characteristics. Caregivers’ gender and caregiving status (parent/spouse) also did not reveal any significant difference between both groups. All caregivers were married and predominantly were residents of adjoining rural areas. Thus, both respondent groups were matched on important socio-demographic attributes and this ensured their comparability.

Table 1. Distribution of caregivers of both groups based on sociodemographic factors.

Details	SG (n = 75)	RG (n = 75)	Statistical test
Care recipients
Age (range)	19–60 years	18–60 years	t = −0.05
	Mean = 34.91	Mean = 34.99	p > 0.05
Gender
Male	46 (61.3)	44 (58.7)	χ^2= 0.11
Female	29 (38.7)	31 (41.3)	p > 0.05
Marital status
Single	39 (52.0)	31 (41.3)	χ^2= 1.71
Married	36 (48.0)	44 (58.7)	p > 0.05
Duration of illness	1–15 years Mean = 4.13	–	–
Caregivers
Age (range)	25–60 years	25–60 years	t = 1.62
	Mean = 46.24	Mean = 44.15	p > 0.05
Gender
Male	28 (37.3)	39 (52.0)	χ^2= 3.26
Female	47 (62.7)	36 (48.0)	p > 0.05
Marital status
Single	0	0	–
Married	75 (100)	75 (100)	–
Relationship
Spouse	36 (48.0)	45 (60.0)	χ^2= 2.17
Parent	39 (52.0)	30 (40.0)	p > 0.05
Religion
Hindu	68 (90.7)	65 (86.7)	χ^2 = 3.01
Others	7 (9.3)	10 (13.3)	p > 0.05
Occupation
Housewife	44 (58.7)	36 (48.0)	–
Farmer	26 (34.7)	39 (52.0)	–
Other	5 (6.6)	–	–
Income (rupees)	0–6000	0–5000	−0.05
	Mean = 1633.3	Mean = 2026.6	p > 0.05
Residence
Rural	70 (93.3)	70 (93.3)	–
Urban	5 (6.7)	5 (6.7)	–

Note: Figures in parentheses are percentages.

The profile of the study group respondents in this study is that the majority were middle-aged married women who were not in employment and were caring for a younger male unmarried person with a diagnosis of schizophrenia. They belonged to the lower income stratum with a mean family income of Rupees 1633 (approx. 23 USD) per month and hailed from a rural background.

Comparisons based on key study variables

The t-test results (Table 2) showed that there was a significant difference between both respondent groups in terms of resilience and life satisfaction. Mean scores reveal higher scores obtained by SG respondents on resilience but significantly lower life satisfaction scores when compared to the RG. No significant difference was seen in terms of preparedness or perceived positive aspects.

Table 2. T-tests for both respondent groups on key study variables.

Variables	Group	Mean	Standard deviation	t Value
Self-affirmation	SG	24.05	4.01	1.29
	RG	24.96	4.56
Outlook of life	SG	12.27	1.45	1.49
	RG	12.64	1.61
Total positive aspects score	SG	36.32	4.61	1.51
	RG	37.60	5.69
Preparedness	SG	24.68	4.36	1.37
	RG	25.37	0.49
Resilience	SG	18.60	4.41	5.57***
	RG	15.75	0.43
Life satisfaction	SG	24.76	1.32	10.69***
	RG	27.35	1.62

df = 73; ***p < 0.001.

Comparisons based on background factors

We were interested in assessing if the SG respondents differed amongst themselves in terms of the key variables of the study based on background factors such as the care recipients’ gender and marital status and their own gender and relationship with the care recipients. A series of independent t-tests were conducted to facilitate these comparisons.

In terms of the caregivers’ gender, we observed a significant difference between male and female respondents on preparedness (t = 2.44; p < 0.05) and the total perceived positive aspects score (t = 1.96; p < 0.05). Mean scores revealed higher preparedness by female caregivers (M = 25.6; SD = 3.97) but lower perception of positive aspects of caring (M = 35.53; SD = 4.51). Male caregivers on the other hand were lower on preparedness (M = 23.14; SD = 4.62) but perceived higher positive aspects of caring (M = 37.64; SD = 4.55) No significant difference was obtained for other key variables in terms of the caregivers’ gender.

The next comparison was based on the caregivers’ relationship with the person that they were caring for (spouse or parent). A significant difference was seen only in terms of outlook of life (t = 2.20; p < 0.05), with spousal carers obtaining a higher mean score (M = 12.64; SD = 1.46) than parents (M = 11.92; SD = 1.37) on this dimension.

It was seen that in terms of the care recipients’ gender a significant statistical difference was obtained for preparedness (t = 2.10; p < 0.05) and resilience (t = 2.18; p < 0.05). Higher mean scores for preparedness were obtained by caregivers who were caring for male recipients (M = 25.50; SD = 3.73) and relatively lower for caregivers of female recipients (M = 23.38; SD = 4.99). Resilience mean scores were higher for those caring for female recipients (M = 19.97; SD = 3.11) and lower for caregivers of male recipients (M = 17.74; SD = 4.91).

The final comparison was based on the marital status of the care recipients (single or married). Caregivers were significantly differentiated only on the “outlook of life variable” with those caring for married recipients, obtaining higher mean scores (M = 12.64; SD = 1.46) as against lower mean scores obtained by caregivers of recipients who were single (M = 11.92; SD = 1.37).

Correlations among variables

Pearson’s correlations were computed for the key variables of the study to assess their interrelationship as presented in Table 3. A highly significant positive correlation was obtained between the resilience and life satisfaction scores.

Table 3. Correlation matrix for variables (SG only, n = 75).

Variables	1	2	3	4	5	6	7	8	9
1. Self-affirmation	1	–	–	–	–	–	–	–	–
2. Outlook life	0.268*	1	–	–	–	–	–	–	–
3. Total positive aspects	0.953**	0.547**	1	–	–	–	–	–	–
4. Preparedness	−0.018	−0.042	−0.029	1	–	–	–	–	–
5. Life satisfaction	0.038	−0.086	0.006	0.080	1	–	–	–	–
6. Resilience	0.004	0.002	0.004	−0.182	0.448**	1	–	–	–
7. Recipients’ age	−0.027	0.007	−0.021	0.022	−0.129	−0.023	1
8. Caregivers’ age	−0.178	−0.294*	−0.247*	−0.179	−0.025	0.124	−0.054	–	–
9. Duration of illness	0.085	−0.026	0.065	0.240*	−0.106	−0.110	0.653**	0.032	1

*p< 0.05; **p < 0.01.

In terms of demographic factors, the age of the recipients did not correlate with any of the key variables of the study. However, the age of the caregivers entered significant negative correlations with their outlook of life and perceived positive aspects scores. A positive correlation was seen between the duration of illness and the preparedness of the caregiver.

Predictors of life satisfaction

Multiple regression analysis was carried out to identify variables that significantly predict the manifestation of resilience in the caregivers of the study group. The resilience score of the SG respondents was treated as the dependent variable (DV) and the other three key variables as independents (IV). The resulting model was significant (F_{(3, 71)} = 7.84, p < 0.001) and the independents together contributed to 25% of the variance in the DV (R² = 0.25). Both caregiver preparedness (β = 0.22; t = 2.13; p < 0.05), and life satisfaction (β = .47; t = 4.51; p < 0.001), emerged as significant contributors to resilience in this model while perceived positive aspects (β = 0.01; t = .05; p > 0.05) was not extracted as a significant predictor. The straight arrows in the path diagram (Figure 1) indicate the direct effects of the three IVs with their standardised beta coefficients. The values near the curved arrows indicate the correlations among the IVs.

Figure 1. Path diagram depicting predictors of resilience-study group (standardised estimates).

Discussion

Resilience in family caregivers of PWS has received scant attention in the Indian caregiving literature and our findings evidence some of its significant predictors. The current study in this regard identifies potential pathways in strengthening resilience in family caregivers. Caregiver preparedness and a focus on the positive aspects of caregiving are themes that have not been sufficiently explored within the informal caregiving literature on schizophrenia and this study adds to the understanding of these variables as well.

Results of this study indicate that caregivers of PWS manifest lower levels of life satisfaction when compared to informal carers of people with minor physical ailments. This agrees with the caregiving literature on schizophrenia that holds that caregivers report lower levels of life satisfaction compared to non-caregivers (Ha et al., 2008; Möller-Leimkühler, 2005). Our finding of lower life satisfaction is also in consonance with the body of literature relating to caregiving stress and family burden experienced by informal carers of PWS (e.g. Raj et al., 2016; Wan & Wong, 2019).

The gender of the caregivers of PWS in this study showed that the majority of them were female. This is in line with the observation that women tend to be the predominant carers for family members having chronic medical conditions, those with disabilities, for the elderly and those with serious mental illnesses (Lerner et al., 2017; Sharma et al., 2016; Tang et al., 2013). This is also true of caregiving for PWS (Koujalgi & Patil, 2013). Being a female caregiver has been associated with greater family burden (Kumar et al., 2015; Yu et al., 2017). In terms of their gender, female caregivers in this study perceived lesser positive aspects in their role but showed more preparedness than their male counterparts. They did not manifest any significant gender-based difference in terms of resilience or life satisfaction.

Further, within the family, the caregiving role tends to be mostly shouldered by parents followed by spouses and siblings (Mancevski et al., 2007) as has been seen for the study group respondents in this study. The impact of caregiving is likely to be more intense when caregivers cohabited with the affected person as seen in our study and mentioned by previous authors (Stengård et al., 2000). Earlier research has found differences in perceived burden and caregiving between the spouse and other informal caregivers (Jungbauer & Angermeyer, 2002). In terms of the relationship with the person with schizophrenia, our findings indicated that caregiving parents had a poorer outlook of life than spousal caregivers but were not differentiated on the other variables of the study.

The duration of illness in this study correlated positively with caregiver preparedness. Thus, it appears that with the passage of time in their caring role, caregivers are more in tune with the illness and the many demands of their caregiving function. Previous researchers have mentioned that duration of illness did not influence family burden (Kumar & Mohanty, 2007) and was not associated with either positive or negative aspects of caring (Singh et al., 2019).

Our results indicate that caregivers of PWS perceived lesser positive aspects in their caring role (though not statistically significant from the reference group). A systematic review of studies pertaining to informal caregiving in schizophrenia identified positive aspects associated with caring that included enhanced family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation (Shiraishi & Reilly, 2019). We however found that the age of the caregivers correlated negatively with perceived positive aspects as well as their outlook of life and it appears that the adverse impacts of caring are experienced more by older caregivers.

A previous study of caregiving in schizophrenia from India found that recipient characteristics such as age, gender, symptoms, and duration of illness did not influence the perceived burden of caregivers, while the duration of illness was correlated with their quality of life (Stanley et al., 2017b). The current study has also not elicited any correlation between the caregivers’ life satisfaction scores and the age or duration of illness of the care recipients, nor did their gender emerge as a variable in influencing the life satisfaction of the caregivers. Other studies from India report a significant association between the resilience levels of caregivers and the age of the recipients and their marital status (Syiemlieh et al., 2019). However, in this study we did not elicit any significant correlation between the recipients’ age, marital status, and caregiver resilience. Syiemlieh and associates also found high levels of resilience in the caregivers and this is in line with our finding as well. They also observed higher levels of resilience in spousal caregivers, while the current study did not find any statistically significant difference between parents and caregiving spouses in terms of their resilience levels. We found a significant correlation between resilience and life satisfaction in this study and the literature reports a positive correlation between quality of life and resilience in caregivers of PWS (Jain & Singh, 2014). Finally, our findings indicated that resilience in caregiving can be an outcome variable in the caregiving process, significantly predicted by high levels of life satisfaction and caregiver preparedness. Resilience has been examined as an outcome variable in previous studies as well and has been considered to be a malleable attribute, suggesting that it is amenable to modification and change through appropriate interventions (Shiraishi & Reilly, 2019). Results of earlier studies from India indicate high levels of burden, low social support, and poor coping in the caregivers of PWS (Stanley et al., 2017a; Walke et al., 2018).

Implications

We agree with the observation of Tungpunkom et al. (2013) that living with and taking care of persons with schizophrenia requires caregivers to adjust to the caregiving role and to their own emotional needs. Interventions are hence required to prepare them to take on the caregiving role effectively and to take care of themselves. It is known that most caregivers feel uncomfortable during the caregiving process and need information about managing the ill person’s care (Scherbing, 2002). Effective communication among patients, family members, informal caregivers, and health care professionals is hence important and the primary means of instilling a sense of preparedness (Hebert et al., 2009; Waldrop et al., 2005). Studies have reported that when caregivers felt more supported, they were more likely to have higher feelings of preparedness (Stratton et al., 2016).

Caregivers require training in caregiving skills beyond the routine advice given by health service providers. Providing guidance in managing the functional activities of the care recipient, appropriate information relating to medication, accessing community resources, and follow-up communication (Zwicker, 2018) are all ways to enhance caregiver preparedness in more competently being able to discharge their caregiving function.

Interventions designed to bolster resilience could help caregivers thrive in the face of adversity (Zhao et al., 2016). Bishop and Greeff (2015) have identified areas to enhance resilience in caregivers of PWS that includes family income, finding support in their community, the availability of hospitals and professionals, family togetherness, family communication, family hardiness, commitment to the family, reframing crises as a challenge, and an internal locus of control within the family. Appropriate family-oriented interventions that seek to strengthen these attributes would considerably enhance resilience in informal caregivers and potentially result in beneficial returns for care recipients as well. In our opinion the focus in treatment and recovery tends to be mostly on the PWS and particularly in the Indian context, scant attention is paid to the issues faced by informal caregivers in managing the ill person. Service providers need to also look at issues faced by caregivers to enable them to perform their duty of care towards the ill person more effectively.

Limitations

All relationships tend to be dynamic and influenced by circumstantial factors and so would be the nature of caregiving relationships. However, the design adopted for the study may not have entirely captured the complexity and fluctuating aspects of the caregiving relationship. Further, while the path analysis explains the experience of life satisfaction to a highly significant extent, about 75% of its manifestation has not been explained by the model generated and we need to acknowledge the role played by other extraneous variables beyond the IVs of this study. The literature mentions the role played by variables such as the influence of social support (e.g. Ribé, et al., 2018) and coping strategies (e.g. Rahmani et al., 2019) on the caregiving experience. However, these variables have not been considered in the current study.

Conclusion

Results indicate that caregivers of PWS, while manifesting higher levels of resilience, perceive lesser positive aspects in their caring role and manifest lower levels of life satisfaction than their counterparts in the reference group. Both groups differed on the key variables of the study with regard to the gender of the caregivers and their caregiving status of being the parent or spouse. Differences were also seen in terms of the gender of the care recipients as well as their marital status. The study highlights the importance of enhancing caregiver preparedness and promoting measures to increase their life satisfaction in order to positively impact their resilience.

Disclosure statement

No potential conflict of interest was reported by the author(s).