Accepting and Committing to Caregiving for Schizophrenia—A Mixed Method Pilot Study

doi:10.21203/rs.3.rs-3799463/v1

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Research Article

Accepting and Committing to Caregiving for Schizophrenia—A Mixed Method Pilot Study

https://doi.org/10.21203/rs.3.rs-3799463/v1

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published 12 Sep, 2024

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Background. End of traditional institutionalized psychiatric care, diagnostic complexities, and associated stigma often negatively impact the social networks of caregivers, making them experience social isolation. Not the “identified patients”, caregiver perspectives are typically overlooked further adding to anticipatory stigma resulting in social death among them. Caregiving experience results in developing coping skills preventing carers from responding to the nuances of the context, and identifying the useful rules— "Experiential Avoidance”. Psycho-education is typically combined with other formal treatment programs for case conceptualization, and to provide a clear rationale for the treatment approach but less as a distinct psychotherapy. Borrowing the philosophy of Functional Contextualism, the present study developed a "Present-Moment Awareness" guided psychoeducational intervention. The aim was to reduce schizophrenia caregiver burden and anticipatory stigma and promote the value of caregiver participation as ‘experts by experience’.

Method. Five family caregivers of remitted schizophrenia patients were recruited using purposive sampling. Pre-post measure was taken on caregiver burden, caregiving experience, sense of personal mastery, and caregiving competence. Results were analysed quantitatively and qualitatively.

Results. A significant decrease in caregiver burden, stigma, and negative effects on the family in post-intervention was observed. Self-compassion led to a rise in a sense of empowerment.

Conclusion. Mainstreaming caregiver-centred “Present-Moment Awareness” guided psychoeducation is essential to address perceived stigma. Caregiver voices must be promoted to prevent social death of carers.

Schizophrenia

Caregiver Burden

Stigma

Psychoeducation

Acceptance and Commitment Therapy

Even when the protection and treatment of schizophrenia is recognized by the UN as a core human right and promoted in the WHO Global Mental Health Action Plan⁽³⁵⁾, societal attitudes & stigma against people with schizophrenia are intense and widespread, causing health inequality, and social isolation.

Commonly diagnosed in adolescence or early adulthood, at least 1 in 300 people (0.32%) ⁽³⁵⁾ worldwide is directly affected by schizophrenia, and indirectly twice as many e.g., as carers. Operating as extensions of healthcare systems and running home-based “care coordinators”, caregivers, are vulnerable to ‘burden of care’ ^{(4, 27)} and the societal attitude of stigma of schizophrenia causes social isolation for them.

Social death is often a result of social isolation ^{(7, 20)} and reflects how the stigma of schizophrenia results in a series of losses in caregivers’ social identity, relationships, and growth opportunities. As healthcare costs and utilization continue to rise, patients become increasingly dependent on the family or informal caregivers’ capacity to operate as abled formal healthcare providers. Even though informal carers benefit from a partnership with health care and social service agencies, caregivers do not receive ongoing support and routine needs assessment from healthcare systems; even when they are co-sufferers, they are not the “identified patients” ^{(5, 8)}. Caregivers in India are not typically covered under formal treatment plans for schizophrenia further adding to their experience of ‘social death’.

Psychoeducation is used to provide information to patients and carers. The rationale is that 'knowledge about schizophrenia' influences the perception of the disorder and scientific understanding of the ‘why, what, and how’ of the disorder will impact the process of stigmatization ⁽¹⁸⁾ and alter the sense of self-efficacy of the caregivers. As caregiver distress emerges as a potential focus, the Acceptance and Commitment Therapy (ACT) based interventions ^{(11, 15, 12, 28)} is a promising treatment. Obtained from mediation analyses, psychological flexibility is found to be the chief therapeutic mechanism for improvement ⁽²³⁾. However, supporting literature on ACT-based family intervention is restricted in India, focusing mainly on the patients. Borrowing the philosophy of Functional Contextualism, the present study specifically combined psychoeducation with mindful breathing of Acceptance and Commitment Therapy to develop a “Creative Hopelessness” stance to address caregiver burden and feelings of stigmatization. The aim was to evaluate the perceived efficacy of specifically present-moment awareness-guided psycho-education on the caregiver burden, of informal caregivers of schizophrenic patients within the Indian context, and was hypothesized that the positive change in the carers’ attitudes will be mainly mediated due to psychological flexibility through the awareness of their “creative hopelessness” and promote voluntary active help-seeking.

Study design

The setting

The study was conducted at the university clinical psychology study centre in a metropolitan city of one of the states in eastern India. The services provided to the centre are free of cost. A one-group pretest-posttest design was used.

Recruitment and sampling

Using purposive sampling, five informal caregivers (mean age= 56.8, SD=11.054) (Table 1) of referred patients with an ICD-10 DCR/ DSM-V criteria for Schizophrenia Spectrum Disorder ^(10,36)to the study centre for therapy completed the intervention. The group consisted of four elderly parents (three fathers, one mother) of affected sons and a spouse of a female patient. Table 1 elaborates on the sociodemographic characteristics of the caregivers who participated in and completed the current study.

In the present study, the primary caregiver was operationalized as the person in the family most involved in the caregiving, providing time, support, monitoring medicines, and other aspects of the patient’s everyday life. Subjective caregiver burden was operationalised as the carer’s perception of bearing a heavy load, the emotional consequences, and their attitude towards caregiving. Objective burden was defined as the extent to which the carer’s life was disrupted due to care. Personal mastery was defined as people’s perception of their life chances as being under personal control or being fatalistically ruled, and finally, caregiving competence was operationalised as a carer’s competence in providing care.

The inclusion criteria for carers were 1) aged18-65 years, 2) parent/sibling/child/spouse to the patient referred, 3) caregiver of either sex, 4) caregiving for a minimum of 1 year, 5) middle-income group as measured by Kuppuswami’s Socio-economic status scale ⁽²²⁾, 6) minimum educational level of class 8, and 7) severity of illness of the ill relative in terms of age of onset, duration of illness, number of episodes of illness, and mode of onset kept open. In the study, all the final participants had a graduation qualification. Informal caregivers with a history of any acute physiological illness, physical handicap, psychological illness, substance addiction, caregiving for more than one relative with psychological illness, or past exposure to psychotherapy in the last 1 year were excluded, as were carers of patients with a history of addiction and criminal activity. Additionally, the inclusion criteria for the referred patient were as follows: 1) receiving care 2) 30-50 years of age; 2) either sex or marital status; 3) unemployed for at least one year currently, and 4) in recovery or in remission.

Ethical approval

Ethical approval for the work was obtained from the university ethical committee (Ref No: 015/17-18/1688). Prior information regarding the purpose of the study, and confidentiality issues were communicated individually to all participants. Written consent was obtained from all the participants before the study commenced.

Table 1

Description of Sociodemographic Characteristics of the Informal Caregiver Participants

Descriptive Statistics
	N	Minimum	Maximum	Mean	Std. Deviation
AOCG	5	40	65	56.80	11.054
SES	5	2.00	3.00	2.4000	.54772
AoP	5	22.00	50.00	35.2000	9.98499
DoRP	5	8.00	40.00	26.2000	12.61745
DoUP	5	2.00	2.00	2.0000	.00000
TSoCG	5	6.00	24.00	14.8000	7.15542
Onset	5	3.00	4.00	3.6000	.54772
AoO	5	18.00	30.00	22.4000	4.77493
DoCG	5	5.00	20.00	9.6000	6.10737
Valid N (listwise)	5

Note. N=5. AoCG= Age of Caregiver, SES= Socio-Economic Strata, AoP= Age of Patient, DoRP= Duration of Relationship with Patient, DoUP= Duration of Unemployment of the Patient, TSoCG= Time Spent on Caregiving (daily), Onset= Onset, AoO= Age of Onset, DoCG= Duration of Caregiving.

Intervention Module

An 11-hour intervention of six sessions spread over 6-7 weeks was conducted. Studies supporting a similar time duration can be found ⁽²⁹⁾. Each session lasted for 90 minutes and included a pre and post-assessment. Table 2 elaborates on the detsils of the assessments conducted at different stages of the study while Table 3 delineates the details of the 11-hour intervention planned and administered in the current study.

Table 2

Assessment details

Session

Purpose

Points Covered

Pre-assessment

Informed consent,

Rapport establishment through free talk, pre-intervention measures

Checking history of caregiving and burden as experienced, Intervention program and Mental Status Examination

Post-assessment

Post-intervention measures

Sharing personal experience and feedback

Table 3

Details of the Intervention Module Administered

Session	Purpose	Points Covered
Session 1	Psychoeducation	Disorder, symptoms as experienced by the patient, medication and relapse prevention
Session 2	Psychoeducation	Clarification, aetiology (neuroanatomical and expressed emotion); Formulating ‘Suffering Inventory’
Session 3	Psychoeducation; Experience of Caregiver Burden	Clarification, free talk on feelings of meaninglessness, personal sacrifices, negativities of caregiving—forming; understanding the ‘Creative Hopelessness’ stance by means of ‘Suffering Inventory’ and ‘Magic Wand’
Session 4-5	Management of caregiver burden; sense of moving forward rather than backward, growing rather than shrinking	Unworkability of ‘Experiential Avoidance’- and ‘Ball in the pool’ and ‘Quick sand’; Present-Moment Awareness exercise “Going Along with the Process” for “Creative Hopelessness” stance; Homework
Session 4-5	Management of caregiver burden; sense of moving forward rather than backward, growing rather than shrinking	Unworkability of ‘Experiential Avoidance’- and ‘Ball in the pool’ and ‘Quick sand’; Present-Moment Awareness exercise “Going Along with the Process” for “Creative Hopelessness” stance; Homework
Session 5-6	Increasing Present-Moment Awareness—Acceptance of the whole process	Same as previous session; feedback and homework.

Assessment

Quantitative Assessment

All the scales were translated and checked by three experts to obtain translations meaningful in the local context. Quantitative data were collected using-

The Burden Assessment Schedule of SCARF (BAS) ⁽³²⁾ measures the subjective and objective components of the burden across 9 different areas.

The Experience of Caregiving Inventory (ECI) ⁽³⁰⁾ captures the experience of caregiving across ten subscales-- eight negative and two positive subscales.

The Measure of Personal Mastery (MoPM) ⁽²⁵⁾ was used to measure caregivers’ personal feelings of control over aspects of their lives.

The Measure of Caregiver Competence (MoCC) ⁽²⁶⁾ is a four-item questionnaire that assesses caregivers’ self-competence in providing care.

Qualitative Assessment

After the assessment, the participants were asked to freely discuss their understanding of the intervention, caregiving experience, and associated problems. Discussions continued for 20-30 minutes.

Analysis

Quantitative analysis

The Wilcoxon signed-rank test was used to analyse the quantitative data. Descriptive statistics of the means and standard deviations were computed.

Qualitative analysis

Post-assessment interviews were analysed using open coding and focus coding. No specific topic framework was followed.

Quantitative Results

The significant findings on the quantitative measures are as follows-

Findings on Caregiver Burden

Table 4

Showing the changes observed in caregiver burden between the two assessment conditions.

Test Statistics
	BASpost – BASpre
Z	-2.023^b
Asymp. Sig. (2-tailed)	.043
a. Wilcoxon Signed Ranks Test
b. Based on positive ranks.

Note. BAS_pre= Burden Assessment Schedule (Pre-intervention), BAS_post= Burden Assessment Schedule (Post-intervention). The Mean BAS_pre was 76.80 ( SD_pre=10.134) and BAS_post= 62.2 (SD_pos_t= 4.147).

Table 4 shows a significant change in ‘burden assessment schedule’ scores from the pretest to the post-test (p=.042) among caregivers indicating less burden in the post-intervention phase.

Findings onCaregiver’s Overall Experience of Caregiving

Table 5.1

Comparison of the Change of Scores in Experience of Care Giving Negative Domain among Participants:

Test Statistics
	ECI_negativePost – ECI_negativePre
Z	-1.214^b
Asymp. Sig. (2-tailed)	.225
a. Wilcoxon Signed Ranks Test
b. Based on positive ranks.

Note. ECI_negativePre = ECI_negativePre-intervention, ECI_negativePost= ECI_negativePost-intervention. The Mean ECI_negativePre-intervention was 100.6 (SD=32.307) and ECI_negativePost-intervention= 70.6 (SD= 20.622)

Table 5.1 shows no significant change in ‘experience of caregiving total negative’ scores from the pretest to post-test (p=.225).

Table 5.2

Comparison of the Change of Scores in the Experience of Caregiving Inventory Positive Domain among the Participants

Test Statistics
	ECI_positivePost – ECI_positivePre
Z	-.405^b
Asymp. Sig. (2-tailed)	.686
a. Wilcoxon Signed Ranks Test
b. Based on negative ranks.

Note. ECI_positivePre = ECI_positivePre-intervention, EC_positivePost= ECI_positivePost-intervention. The Mean ECI_positivePre-intervention was 34.0 (SD=14.081) and ECI_negativePost-intervention= 37.6 (SD= 14.501)

Table 5.2 shows no significant change in ‘experience of caregiving total positive’ scores across treatment (p=.686).

Findings on Domain-Specific Changes in Caregiving Experience

Table 5.3

Comparison of the Change of ‘Domain-Specific’ Scores in Experience of Caregiving among the Participants across Intervention Conditions.

Test Statistics
	DB_post – DB_pre	NS_post – NS_pre	STG_post – STG_pre	PwS_post – PwS_pre	EoF _post – EoF_pre	NtBU _post–NtBU_pre	Dep_post – Dep_pre	Loss _post – Loss_pre	PPE _post – PPE_pre	GAoR_post – GAoR_pre
Z	-1.095^b	-.552^b	-2.032^b	-.921^b	-2.023^b	-1.214^b	-.365^b	-.557^b	-.813^c	-.272^c
Asymp. Sig. (2-tailed)	.273	.581	.042	.357	.043	.225	.715	.577	.416	.785
a. Wilcoxon Signed Ranks Test
b. Based on positive ranks.
c. Based on negative ranks.

Note. DB= Difficult Behaviour, NS= Negative Symptoms, Stigma, PwS= Problems with Services, EoF= Effects on Family, NtBU=Need to Back Up, Dep= Dependency, Loss= Loss, PPE= Positive Personal Experiences, GAoR= Good Aspects of Relationship. Pre= Pre-intervention, Post=Post-intervention.

Table 5.3 shows a significant change only in ‘stigma’(p=.042) and ‘effect on family’(p=.043) scores across treatment conditions indicating less stigma and effect on family in post-intervention.

A computed p-value of 0.42 significantly below the 0.05 level than the critical p in post-intervention measures of stigma indicated that the present intervention could significantly reduce the experience of stigma by the concerned carers in association with their ill relatives’ condition. A reduction in stigma among caregivers is seen to be intimately related to reduced negative effects of schizophrenia on the family as a whole.

Findings on Personal Mastery and Caregiving Competence

Table 6.1

Comparison of the Change of Scores in ‘’Measure of Personal Mastery’ within Participants across Intervention Condition.

Test Statistics
	MoPM_Post – MoPM_Pre
Z	Z= -1.219^b
Asymp. Sig. (2-tailed)	.223
Wilcoxon Signed Ranks Test Based on positive ranks

Note. MoPM_pre= Measure of Personal Mastery (Pre-intervention), MoPM_post= Measure of Personal Mastery (Post-intervention). The Mean MoPM_pre was 14.40 ( SD_pre=3.286) and MoPM_post= 9.4 (SD_pos_t= 4.159).

Table 6.1 shows that there has been no statistically significant change in ‘Measure of Personal Mastery’ (MoPM) (p=.223) across treatment conditions among participants. The six-session intervention failed to statistically increase the carers’ experience of mastery of caregiving.

Table 6.2

Comparison of the Change of Scores in ‘’Measure of Caregiving Competence’ within Participants across Intervention Condition.

Test Statistics
	MoCC_Post – MoCC_Pre
Z	Z= -1.633^b
Asymp. Sig. (2-tailed)	P=.102
Wilcoxon Signed Ranks Test Based on positive ranks

Note. MoCC_pre= Measure of Caregiving Competence (Pre-intervention), MoCC_post= Measure of Caregiving Competence (Post-intervention). The Mean MoCC_pre was 7.6 ( SD_pre=2.073) and MoCC_post= 9.6 (SD_pos_t= 2.07).

Table 6.2 shows that there has been no statistically significant change in ‘Measure of Caregiving Competence’ (MoCC) (p=.102) across treatment conditions among participants. The six-session intervention failed to statistically increase the carers’ experience of mastery of caregiving.

Qualitative Results

Table 7

Showing Focus Codes and the corresponding Open Codes for Individual Participant

Focus Code	Focus Code with Underlying Open Codes
	Participant 1
Positive impact of therapy	Firm belief regarding efficacy of intervention Understanding about the nature of illness the ill-relative is suffering from Perceived efficacy of intervention regarding self as well as ill-relative The realization that the self is not responsible for the condition of the ill-relative Ability to express personal agony to other relatives Understanding that the ill-relative is not capable of sustaining long-term relationship Ability to decide on future financial empowerment for self and ill-relative Perceived sense of well-being due to intervention Confidence in discussing ill-relative's problem with other people which helps her in socialization
Reduced self -stigma	Ability to express personal agony to other relatives Confidence in discussing ill-relative's problem with other people which helps her in socialization
Self-Empowerment	The realization that the self is not responsible for the condition of the ill-relative Ability to decide on future financial empowerment for self and ill-relative
Feelings of Calmness	Perceived sense of relaxation at ease after Present-Moment-Awareness exercise
Better shared Future	Ability to decide on future financial empowerment for self and ill-relative
	Participant 2
Positive impact of therapy	Perceived efficacy of intervention Perceived positive change in interpersonal relation Increased tolerance of odd behaviour from ill-relative Expressing relief in being able to share personal agony with therapist Understanding about the nature of illness and ill-relative's suffering Observation of improvement in the ill-relative Increased feeling of engagement with ill-relative & family Increased acknowledgement by the ill-relative Perceived improvement of home environment Improvement of social reciprocation of ill-relative Perceived sense of well-being after the intervention Hope for better future of the ill-relative and self
Reduced self -stigma	Ability to express self to others
Self-empowerment	Perception of self as co-sufferer
Feelings of Calmness	Feeling of relaxation at ease after Present-Moment-Awareness exercise
Better shared future	Hope for better future of the ill-relative and self
	Participant 3
Positive impact of therapy	Observed improvement in ill-relative's symptom and self-care Improvement of interpersonal relation between self and ill-relative Improved understanding about the nature of illness and increased ability to offering support to ill relative Perceived sense of well-being after the intervention Finding time for better self-care Feeling more energetic after breathing exercise Understanding the need to make the ill-relative empowered Increased empathy for the ill-relative Ability to see self as responsible to ensure efforts by others and ill-relative
Reduced self-stigma	Ability to express agony of caregiving
Self-empowerment	Increased ability to dissociate self from the problems Finding time for better self-care Ability to see self as responsible to ensure efforts by others and ill-relative
Feelings of Calmness	Feeling more energetic after breathing exercise
	Participant 4
Positive impact of therapy	Observation of improvement in the ill-relative Perceived change in self and ill-relative due to intervention Difficulty to discuss ill-relative’s problem with family and lack of family support Increased ability to support the ill-relative for betterment Improvement of interpersonal relation between self and ill-relative Perceived sense of well-being after the intervention
Stigma and Isolation	Feelings of lack of support from outside Difficulty to discuss ill-relative’s problem with family and lack of family support
Feelings of Calmness	Feeling of relaxation at ease after Present-Moment-Awareness exercise
Better shared Future	Hope for better future of the ill-relative and self
	Participant 5
Positive impact of therapy	Perceived sense of well-being after the intervention Understanding about the nature of illness and ill-relative's suffering Increased empathy for the ill-relative Accepting illness as a bad time Exploring ways to better deal with the behaviour if the ill-relative
Stigma and Isolation	Difficulty talking about the illness with others due to lack of understanding by others
Feelings of Calmness	Feeling of relaxation at ease after Present-Moment-Awareness exercise
Better shared Future	Hope for better future of the ill-relative and self

Showing Focus Codes and the corresponding Open Codes for Individual Participant

Table 8

Shows Focus codes and the corresponding common components across all participant

Reanalysing Focus Codes Across Participants	Components
Positive impact of the intervention	Acknowledging the benefit of therapy Improvement in knowledge about mental illness Improvement in attitude toward mental illness Improvement in an interpersonal relationship with the ill relative
Reduced self-stigma	Increased ability to share personal experiences of caregiving with others Increased ability to discuss the ill relative with others
Self- Empowerment	Increased focus on self-care Future financial planning Increased ability to dissociate self from the problems
Better Shared Future	Hope for better future of the ill-relative and self
Feelings of Calmness	Feeling of relaxation at ease after Present-Moment-Awareness exercise

Shows Focus codes and the corresponding common components across all participant

Tables 7 and 8 show a clear positive impact of the current intervention module on knowledge and attitude towards the illness. All participants report positive changes in the relational dynamics with the affected patient, a reduction in anticipatory stigma, comfortable discussing the ill-relative with others, an overall sense of empowerment, and a lookout for a better future together.

To the best of our knowledge, our study when conducted was one of the few studies undertaken in India, determining the effect of Acceptance and Commitment Therapy (ACT) based psycho-educational intervention on schizophrenia carers.

Knowledge is freedom with which comes responsibility. First coined by Anderson et al (1980) ⁽³⁾ with its roots in behaviour therapy, psychoeducation is a powerful therapy mode often inadequately addressed. In the present study illness and treatment-focused psychoeducation was used. Acceptance and Commitment Therapy (ACT) ⁽¹⁵⁾, based on the philosophy of Contextual Functionalism was categorically combined to develop a brief, easy-to-administer and use intervention for family caregivers. For this matter, particularly “Going Along with the Process” as the Present-moment exercise was used. The exercise employs breathing as a mode to address awareness along with acceptance, defusion, and self-as-context. Often life experiences lead to the development of certain protective rules. But these are often unhelpful as they prevent a person from responding to the nuances of the context—Experiential Avoidance. The Suffering Inventory and Magic Wand question was used to help develop the Creative Hopelessness stance.

Quantitative findings of the current study observed that the psychological distress of each participant resulted partly from the lack of knowledge about the nature of schizophrenia and how best to support the patient, and partly due to the perceived stigma of having a mentally ill relative, attitudes toward personal loss due to caregiving, and the coping strategies used. Ultimately, such absence led to hopelessness, helplessness, and feelings of social death. Sense of invalidation self-criticism, and alienation were important determinants for caregivers’ overall caring experience.

Overall, the results indicated the current intervention had a moderate effect on caregiver burden. Specifically, caregiver burden, stigma, and effect on family, reached statistical significance suggesting that the current intervention program may be effective in achieving personal mastery when run need-based regularly for a prolonged period. Results were consistent with past studies that showed because families must adjust very abruptly to the caregiving role, they often feel burdened ⁽²⁴⁾ and knowledge about schizophrenia and alternative coping reduces caregiver burden, and internalized stigma contributing to a supportive social environment ⁽⁶⁾. Creative Hopelessness allowed them to realize that it is the ‘why’ and not the ‘what’ of caregiving that is important. The Present-Moment Exercise helped them shift their focus from the burden aspect of care to the overall process of caregiving and notice when they would go round-in-loop.

Effect on Family

A clear association between symptoms manifestations and negative effects of the disorder in the family evidenced carers perceived the illness as a sad experience because of reflections about the overall missed opportunities. Positive symptoms, especially suspicion and aggressivity were particularly difficult. Such incidents made caregiving an isolating experience. It was also an obligatory responsibility for some, trying to balance the demands of caregiving with family, work, and other commitments.

The husband of the female patient describes:

“Previously we used to fight every day..she would start abusing me for her suspicions..I would ask her if she disliked me coming home after work and wished me to stay away.. I always thought that I was here to work only..very hard but nothing to gain in return..absolutely useless to serve..”

Caregivers’ maximum distress lay with the negative domains of dealing with the ‘difficult behaviour’ followed by ‘loss’ and ‘dependency’. Finding the good out of the caregiving experience was related to better knowledge, self-validation, and finding meaning. Continued difficult experiences with the patient without adequate knowledge on the disease process made their efforts unappreciated, and contributed to their burden. Knowledge also decides the care quality and swift adjustment to the new role of “informal care” ⁽¹⁶⁾. The educational level of the caregivers, their coping strategies used, and the availability of social support ultimately influenced the appraisal of caregiving ⁽¹⁾. The current intervention caused a significant reduction (p= .043) in the perceived effect of schizophrenia on the family (EoF) and the caregiving burden (p=.042).

Coping, Empathy and Self-compassion

Caregivers’ reliance on emotional coping with ill-relatives’ difficult behaviors ⁽³¹⁾ results in their lack of mastery to cope. These caregivers used self-alienation and self-blame which led to subjective burden.

“Initially it was very very painful…I would read books, listen to music..chat with friends.. but nothing worked..I would keep everything to myself… thought of ladies in an even worse condition..I used to assure myself..in vain that someday my son will understand...accept me as his mother…”(mother of the adult son)

They often lacked self-compassion and would use negative self-descriptions. In the current study, psycho-education increased carers’ psychological flexibility to help them acknowledge their previously forbidden moment-to-moment emotional states. They learned that effective problem-solving-based coping, such as focusing on the little positive attempts by the patient rather than the emotional hurt caused can reduce interpersonal conflict and improve interpersonal communication -

“We communicate normally..she now tries to understand my struggle...the current home environment is totally changed..much more normal..I can feel the change in me, my way of interacting with my wife, and friends..” (Husband of the female patient).

Qualitative findings show their present-moment awareness reduced household tension, fostered supportive, empathic family dynamics, and allowed the carers to cope better with the patient. Findings were consistent with the literature that psychological flexibility improves family dynamics by promoting awareness of communication style ⁽⁹⁾ can reduce caregiver burden and improve the overall well-being of informal carers ⁽¹⁹⁾.

Anticipatory Stigma and Social Death

The current study shows that often stigma of the informal carers to schizophrenia was more anticipatory than real and associated with a lack of self-compassion, increased self-blame, and negative dispositional attribution. Stigma was also associated with a lack of ability to seek help.

“My colleagues suggested I would admit her to an asylum, but I didn’t. I never wanted her to be seen as a mad-man..” (Husband of the female patient)

Caregivers' metacognition influenced their reports of stigmatization.

“We are still scared..if he ever gets into something illegal…we understand him…but others may not!” (father of a young adult son)

Moreover, the lack of open communication with the healthcare system and team not only compromised their sense of competence, and social networking but rendered them isolated and feeling dead socially. These caregivers, post-intervention, reported significantly less stigma (p=.042), were more open to discussing illness-related issues publicly, and felt an interpersonal connection. The current intervention reduced these relatives’ guilt and improved empathy. Girón, Nova-Fernández et al ⁽¹⁴⁾, showed that empathy is an independent mediator of the effect of family psychosocial intervention. With knowledge, they empathized the patients’ ‘odd’ behaviours, and inability to sustain fulfilling social reciprocity, and felt a sense of engagement with the ill-relative

The elderly father of a middle-aged male patient reported—

“I am getting peace of mind. Now I try to understand others’ problems similarly to the way I try to feel my son’s behaviors..unlike before..I remain neutral now, when he makes mistakes and his mom attacks him..in fact I try to support him, carry out things on his behalf.”

Greater psychological flexibility in the current study helped widen the perspective, fostering both negative and positive experiences. It can be inferred that mental flexibility as well as increased awareness, led to the reduction of misconceptions and shame surrounding schizophrenia while fostering social engagement ⁽^17,33⁾.

Self-Empowerment and Personal Growth

While the most statistically observable changes were seen particularly in the domains of ‘stigma’ and ‘effect on family’, a common theme was the satisfaction of self-expression. Being able to voice their unique experience added to their sense of autonomy. The intervention had the effect of being validated and ultimately led to personal growth-

“..no one asked me how I felt…how I would tackle…now that you’re asking and am talking, after knowing why she used to behave such a way…it is so assuring…currently, we don’t fight much..mostly I remain silent even if she would say something...not that she does it intentionally…I am the problem, I am the solution” (Husband of female patient)

Even when the pain of seeing their ill-relative lose a fortune was inevitable, acceptance added to their self-empowerment to an extent where they now hope for a future both for themselves and the ill-relative, and feel responsible for ensuring it. The financial provision no longer appears a simple obligation but a value-guided responsibility. They willingly adhere to mindful breathing, and ‘feel a different extra energy’, to incorporate conscious de-attachment as self-care.

What Matters?

Helping the caregivers view themselves, the patient, and the future compassionately helps caregivers endure the burden of the present situation, and strengthen their value-directed behaviour. Fostering future hope is particularistic as well as general. Hope and family involvement are related to socio-cultural, age, economic, and geographical contexts. This might prompt in the future for the provision of family-focused brief ACT-based therapy and the role of social prescribing as a mandatory treatment module. However, such aim can only be achieved by systematically including informal caregivers as active partners, in treatment and research. Carers are experts by ‘lived’ experience. Without their voices, the picture remains incomplete. Involving informal carers is an important means to address social expectations; to rethink the existing hierarchies of the current Indian health-related science and thus change the treatment culture as a whole.

Limitations

One major limitation of this study was the small sample size with primarily elderly caregivers. No matched control group was included. A randomized waitlist control group, dynamic waitlist design (DWLD), and regression point displacement (RPDD) as alternatives could have increased the efficiency and generalization power of the study findings. Availability of caregivers was a major restriction due to the lack of an in-patient facility at the study centre coupled with stigma toward family intervention. Also, attending a family program conveyed a series of monetary and logistical difficulties including time, motivation, and energy.

Future Implications

A major observation and an impediment faced while carrying out the study was the lack of willingness for families to be active participants in treatment due to the existing social stigma related to mental health. The exact interconnection and frequency of real and anticipated stigma in India needs clarification^(18).

The general understanding of the need for collaborative family-based intervention to mainstream patients was poor. Families often approach therapy as an individual endeavour and not as a collective phenomenon. While the attitude towards the development of any mental illness is, a failure on the part of the affected individual, similarly cure is often perceived as the patient’s responsibility. Thus, it is essential to deeply explore the role of Indian collectivism in promoting social security and how the prevailing paternalism outweighs quality healthcare. From a treatment perspective, more than reducing actual stigma, the focus should be on how to normalize perceived discrimination and thus reduce the social death of these families. Further qualitative research is required to study these overlapping pathways between the mental bias of experiential avoidance and decision-making to curate human-centric interventions.

Acknowledgment

We acknowledge the voluntary participation of the participants and patients and thank them profusely. We also thank the respective psychotherapists at the study centre who referred their patients to participate in this study. We declare no financial assistance was taken or given to conduct the study.

Data Availability

The data that support the findings of this study are available from the authors, but restrictions apply to the availability of these data, and are not publicly available. The data are, however, available from the authors upon reasonable request and with the permission of the university's ethical committee.

Author Details

Aishwarjya Chakraborty^1*, Clinical Psychology Centre of University of Calcutta, University of Calcutta¹Clinical Psychology Centre of University of Calcutta, University of Calcutta,

*Correspondence: [email protected]; Tel.: +919433036929

²Department of Psychology, University of Calcutta, [email protected]

³Department of Psychology, University of Calcutta, [email protected]

^1,2,3University of Calcutta, Rashbehari Siksha Prangan (commonly known as Rajabazar Science College Campus), 92, Acharya Prafulla Chandra Road, Kolkata – 700009, West Bengal, India.

Somdeb Mitra²,Department of Psychology, University of Calcutta.

Deepshikha Ray³, Department of Psychology, University of Calcutta.

Author’s Contribution

The study was designed by A.C and supervised by S.M and D.R. A.C conducted the study, collected and analysed the data, and prepared the manuscript. S.M and D.R supervised the data analysis. All the authors read the manuscript and approved it.

Competing Interests

The authors declare that they have no competing interests.

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No competing interests reported.

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Accepting and Committing to Caregiving for Schizophrenia—A Mixed Method Pilot Study

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