A cross-sectional study exploring the positive aspects of caregiving in opioid dependence and its relation with quality of life, social support, and caregivers’ burden

ABSTRACT

Background and Aims:

Despite a large body of research linking caregiver burden and social support in substance dependence, positive aspects of caregiving in these disorders have received very minimal attention. This exploratory observational study aimed to assess the positive aspects of caregiving for opioid dependence and evaluate the association of these positive aspects with caregiver quality of life, burden, and social support.

Methods:

This cross-sectional study included 199 caregivers of patients with opioid dependence recruited through purposive sampling. Participants were assessed using the Scale for Positive Aspects of Caregiving Experience (SPACE), World Health Organization Quality of Life–BREF version, Family Burden Interview Schedule (FBIS), and Social Support Questionnaire.

Results:

Of the 199 caregivers recruited, a majority of the caregivers were middle-aged women. About two-thirds of the patients were currently using opioids (n = 135, 67.8%), while the remaining were abstinent. Among the SPACE domain scores, the mean was highest for motivation for the caregiving role (2.07), which was followed by self-esteem and social aspect of caring (2.04), caregiving personal gains (1.76), and caregiver satisfaction (1.65). Caregivers of patients currently abstinent experienced greater positive aspects of caregiving (SPACE mean item score 2.57 versus 1.62, P < 0.001), and lesser burden (FBIS mean score 13.4 versus 29.3, P < 0.001).

Conclusion:

Positive aspects of caregiving can be potentially utilized for better caregiver engagement in treatment and improved caregiver outcomes.

INTRODUCTION

Substance dependence affects an individual as well as the family and is considered a complex biopsychosocial phenomenon. The family members can act as social and emotional support in the treatment engagement and recovery of the patient with substance dependence.[1,2] At the same time, it is equally distressing for the family member to see his/her relative suffering from substance dependence. Caregiver and care-recipient are involved in a dyadic relationship and the process of caregiving is conceptualized as a multidimensional construct.[3] Various frameworks have tried to look into the outcome of the caregiving role, and one of the models is stress appraisal, which states that caregiving stress is influenced by a stressor, along with positive and negative appraisal of their caregiving role.[4]

The caregiving process for an individual with substance dependence can result in a positive or negative outcome (and not necessarily mutually exclusive). Previous research has deliberated quite a lot on the adverse consequence of substance dependence on family members.[5–7] However, some attention has also been paid to the positive aspects of caregiving. One can have a sense of fulfillment and satisfaction in caregiving role.[8,9] Several researchers have described the benefits of caregiving. Studies have looked into the positive aspects of caregiving in various mental health conditions like bipolar disorder, schizophrenia, and dementia.[10–15] Predominant themes in the caregiving process, which emerged as positive aspects of caregiving, were the enhancement of caregiver esteem, uplifting effects of caregiving, and construe meaning through caregiving.[3] Literature has also talked about caregiver gain, which has been described as the degree to which providing care is seen to improve and enrich the quality of a person’s life.[16] Caregivers of patients with schizophrenia have found caregiving personal gains through support from mental health professionals by sharing information, interacting with other family members, and through group participation.[13,17]

Limited literature has looked at the positive aspects of caregiving among caregivers of patients with substance dependence. A qualitative study involving caregivers of young people receiving treatment for substance use disorder found that children’s positive self-perception was associated with caregivers’ positive self-perception.[18] In some places, family and other caregiver involvement in substance-related treatment is stressed as a fundamental value and a top priority for system improvement.[19] It has been suggested that placing a strong emphasis on the caregiver promotes help-seeking and helps to deliver favorable outcomes.[20] However, there are no quantitative studies using scales that have looked at the positive aspects of caregiving among caregivers of patients with substance dependence. Understanding the positive aspects of caregiving for persons with substance dependence could potentially help to utilize it in the therapeutic and system approaches. Thus, the present study was planned to assess the positive aspects of caregiving among caregivers of patients with opioid dependence. Opioid dependence was selected as it is associated with significant caregiver distress and often requires long-term treatment. We also aimed to see the relationship between positive aspects of caregiving with substance consumption status, and with other parameters like the experienced burden of care, perceived social support, and quality of life.

METHODOLOGY

Setting and participants

This exploratory cross-sectional observational study was carried out in a specialized addiction treatment center in northern India. The center provides treatment for a variety of patients with substance-related problems and has a high influx of patients with opioid dependence. The center provides comprehensive medically oriented care to patients in the form of medications and psychosocial intervention. Patients from various parts of northern India seek services at the center. The center provides both agonist and antagonist-based treatment (decided as per patient and therapist choice based upon many clinical considerations). The present study was done following the principles enshrined in the Declaration of Helsinki, after getting approval from the Institutional Ethics Committee (reference number IEC-336/01.04.2022). Participants were recruited after obtaining written informed consent from caregivers as well as patients. The data collection spanned from May 2022 to November 2022.

For this study, patients and caregivers were recruited as dyads through purposive sampling. Adult patients aged 18 to 65 years seeking treatment for opioid dependence (as per ICD 10) with their caregivers and aged 18 to 65 years involved in the care of the patient for at least 6 months and were willing to give consent were included in the study. Non-consenting caregivers and caregivers who were in the support-giving role for less than 6 months and those who had any comorbid physical or psychiatric condition/illness, which could have interfered with the assessment, were excluded. Those dyads where patients or caregivers did not consent were also excluded. Dyads were not excluded if the patient was dependent on any other substance. The caregiver was operationally defined in the study as any relative or family member who provided unpaid assistance in various activities like involving oneself in the care of a patient, living with the patient, supervising day-to-day activities as well as their medication, and liaison with the treating team. In case more than one family caregiver is available, the caregiver selected for the study was the one staying longer with the patient and was involved more closely in the care and was decided after mutual consensus among the patient, caregiver, and treating clinician. We included only those caregivers who accompanied the patient to the treatment setting.

Procedure of the study

The screening was performed in outpatient and inpatient settings. Those who fulfilled the inclusion and exclusion criteria were offered participation and participants were included in the study after taking informed consent. Demographic (age, gender, employment status, family type, and locality) and substance use characteristics (age of onset of opioid use, harmful or dependent use of other substances, history of injecting drug use, history of inpatient treatment for substance) and current status of opioid use were obtained. We also assessed for a history of concurrent medical or psychiatric illness in the patient and also any history of incarceration. Furthermore, caregivers were assessed for their positive aspects of caregiving using the Scale for Positive Aspects of Caregiving Experience (SPACE). Abstinence from opioid use was inferred as per the self-report of the patient. Caregiver burden was assessed by using the Family Burden Interview Schedule (FBIS), quality of life was assessed by the World Health Organization Quality of Life-BREF (Hindi version), and social support was assessed using the Hindi version of the Social Support Questionnaire (SSQ). The questionnaire was gathered in a single sitting by one of the investigators who is fluent in speaking Hindi (PS or SS).

Instruments

Positive Scale for Positive Aspects of the Caregiving Experience was used to assess positive aspects of caregiving.[21] There are 44 items on the scale, each rated on a 5-point Likert scale. The scale has 4 domains that look into caregiving personal gains, motivation for the caregiving role, self-esteem, and social aspects of caring. A higher score indicates a more positive caregiving experience. It has good psychometric properties and has been developed in the Hindi language. It has good face validity, internal consistency, test–retest reliability, split-half reliability, and cross-language reliability.

Family Burden Interview Schedule was developed by Pai and Kapur[22] to assess the burden perceived by caregivers. It encompasses both objective and subjective assessments of caregivers. It has 24 items grouped under 6 domains encompassing finances, disruption, and effect on health. A higher score indicates more burden. It is freely available in the public domain. The interview is conducted by the clinician and is available in Hindi. The inter-rater reliability was above 86% for all the items, and the objective burden evaluated by the raters and subjective burden reported by relatives had a high correlation with each other.

WHO Quality of Life-BREF (WHOQoL-BREF)[23] has four domains, physical health, psychological health, social, and environmental. It contains a total of 26 items, which are scored on a five-point scale with some items requiring reverse coding. It is available in the public domain. The Hindi version of the scale has been used in the present study.[23]

The Social Support Questionnaire comprises 18 items.[24] Each item is rated on a 4-point Likert scale rated from 1 to 4. The maximum score is 72. A higher score indicates higher perceived social support. The questionnaire is available in Hindi, and the Hindi version has been found to be reliable and valid in the Indian population.

Statistical analysis

A formal sample size estimation was not performed, though we aimed for a sample size of around 200 to give meaningful data for further analysis. Data analysis was performed by using SPSS version 26 (IBM Corp, Armonk, NY). Continuous variables were analyzed by representing mean and standard deviation. Frequency and percentage were calculated for nominal and ordinal variables. Pearson’s correlation coefficient and Spearman correlation coefficient were used as applicable to infer the association between positive aspects of caregiving and other variables. A P-value of less than 0.05 was considered statistically significant. Missing value imputation was not required.

RESULTS

The study included 199 caregivers and patients with opioid dependence (218 dyads were approached, 4 patients were aged less than 18 years, 5 caregivers did not provide consent, 10 accompanying persons did not fulfill the criteria of being considered as caregiver). Table 1 represents the socio-demographic and clinical profile of the included patients with opioid dependence and their caregivers. The caregivers in the present study were most commonly mothers (36.2%), followed by spouses (32.2%), fathers (18.6%), siblings (8.5%), and others (4.5%). Although the mean age of the patients was in the late twenties, the mean age of the caregivers was early forties. All of the patients were males, and the majority of the caregivers were females. Although a slight majority of the participants came from nuclear families, four-fifths of the sample came from an urban background. The mean duration of stay with the patient was 20 years.

Table 1.

Socio-demographic and Clinical Profile of the Patients with Opioid Dependence and Caregivers (n=199)

	Mean or n	SD or percentage
Age of patient in years	28.3	7.8
Gender of patient
Male	199	100%
Employment status of patient
Employed	119	59.8%
Unemployed	80	40.2%
Age of caregiver in years	42.2	12.7
Gender of caregiver
Male	57	28.6%
Female	142	71.4%
Employment status of caregiver
Employed	108	54.3%
Unemployed	91	45.7%
Family type
Nuclear	114	57.3%
Extended	85	42.7%
Locality
Urban	161	80.9%
Rural	38	19.1%
Duration of stay (years)	20.7	9.3
Age of onset of opioid use in years	20.0	6.4
Currently abstinent from opioids	64	32.2%
Harmful/dependent use of other substances
Tobacco	195	98.0%
Alcohol	66	33.2%
Cannabis	137	68.4%
Sedative-hypnotics	18	9.0%
Others (stimulants, cocaine, inhalants)	6	3.0%
History of injecting drug use ever in lifetime	83	41.7%
History of inpatient treatment in past for substances	57	28.6%
Presence of concurrent medical illness	8	4.0%
Presence of concurrent psychiatric illness	8	4.0%
Past history of incarceration	54	27.1%

SD: Standard deviation

Among the patients, 135 (67.8%) were actively using opioids, whereas 64 (32.2%) were abstinent and currently on treatment. Eighty-three patients (41.7%) had a lifetime history of injecting drug use during lifetime. History of inpatient care was present in 57 (28.6%) patients. History of concurrent medical or psychiatric illness was present in 8 (4%) patients each. History of incarceration was present in 54 patients (27.1% of the sample).

The mean of the scale or sub-scale scores for positive aspects of caregiving, burden, quality of life, and social support are depicted in Table 2. The highest mean score was for motivation for the caregiving role followed by social aspects of caring, caregiving personal gains, and caregiver satisfaction. Furthermore, we attempted to look into the correlation of SPACE domains with the duration of abstinence, FBIS, WHOQOL-BREF, and SSQ [as shown in Table 3]. SPACE mean-item total score had a positive correlation with the duration of abstinence from opioids and quality of life and a negative correlation with the burden. The social support perceived did not have a significant relationship with the positive aspects of caregiving domains.

Table 2.

Scores of Various Scales in Caregivers of Patients with Opioid Dependence

Scale or subscale	Mean	SD
Scale for Positive aspects of caregiving (SPACE)
Caregiving personal gains	1.76	0.92
Motivation for caregiving role	2.07	0.89
Caregiver satisfaction	1.65	0.92
Self-esteem and social aspects of caring	2.04	0.71
Total SPACE score (mean item)	1.92	0.84
Family Burden interview Schedule (FBIS)	24.22	11.72
WHOQOL-BREF
Physical health	51.81	12.46
Psychological health	56.95	13.84
Social relationships	51.51	19.55
Environmental health	57.25	15.49
Social support questionnaire (SSQ)	50.47	5.72

SD: Standard deviation

Table 3.

Correlation of SPACE Domains and Other Parameters

	Caregiving personal gains	Motivation for caregiving role	Caregiver satisfaction	Self-esteem and social aspects of caring	Total SPACE score
Family Burden Interview Schedule	-0.514**	-0.553**	-0.619**	-0.457**	-0.576**
WHO-QOL Physical Health	0.489**	0.442**	0.454**	0.554**	0.521**
WHO-QOL Psychological Health	0.356**	0.354**	0.411**	0.427**	0.402**
WHO-QOL Social Relationship	0.258**	0.163**	0.325**	0.305**	0.279**
WHO-QOL Environment	0.402**	0.380**	0.371**	0.485**	0.443**
Social Support Questionnaire	0.088	0.075	0.138	0.187	0.111

SPACE: Scale for Positive Aspects of Caregiving, WHOQOL: World Health Organizations Quality of Life. **P<0.01

We attempted to look into the positive aspects of caregiving and caregiver burden of caregivers among patients who are using the substance with those who are abstinent from opioids on treatment [as summarized in Table 4]. Caregivers of the patients with opioid dependence who were abstinent from treatment had higher scores on all the subscale scores of the SPACE questionnaire. The total SPACE scores were also higher among the caregivers when the patients were abstinent. Expectedly, caregivers experienced a lower burden when the patients were abstinent from treatment.

Table 4.

Positive aspects of caregiving and burden where patients were actively taking substances and were abstinence on treatment

	Abstinent on treatment (n=64)		Active use (n=135)		P
	Mean	SD	Mean	SD
SPACE Domains
Caregiving personal gains	2.40	0.71	1.46	0.86	<0.001**
Motivation for caregiving role	2.73	0.61	1.76	0.84	<0.001**
Caregiver satisfaction	2.41	0.73	1.29	0.78	<0.001**
Self-esteem and social aspect of caring	2.42	0.61	1.87	0.69	<0.001**
Total SPACE score (mean item)	2.57	0.62	1.62	0.77	<0.001**
Family Burden Interview Schedule	13.44	10.84	29.33	8.12	<0.001**

SD: Standard deviation, SPACE: Scale for Positive Aspects of Caregiving, **P<0.01

DISCUSSION

The present study suggested that caregivers of patients with opioid dependence may also experience some positive aspects of caregiving. Out of the four domains of SPACE, motivation for the caregiving role had the highest score followed by social aspects of caring, caregiver personal gain, and caregiver satisfaction. Indian studies that have looked into the positive aspects of caregiving in bipolar disorder, schizophrenia, and dementia had found the highest score for motivation for the caregiving role and the least score for the social aspect of caregiving.[12,25,26] However, the mean scores across various domains in our study were relatively less as compared to other mental health disorders evaluated in the previous studies. This suggests that the appraisal of positive aspects of caregiving may be much lower for substance dependence, as substance use may be looked upon as a volitional and moral problem, rather than an unanticipated psychiatric disorder. The stigma and social rejection associated with people with substance dependence may also be contributory.[27] The differences in subscales may also mean that caregivers may be quite interested in helping the individual with substance dependence (reflected by scores on the motivation domain), but the provision of help does not lead to satisfaction being appraised (reflected by lower scores on the satisfaction domain).

Correlation analysis showed that all the domain scores and the total score of SPACE had a significant positive correlation with domains of quality of life. This associational study does not imply causation, and one could assume that caregivers with better quality of life could better appraise the positive aspects of caregiving. Our study could not identify any significant correlation between positive caregiving with social support, suggesting positive aspects of caregiving may be perceived by those caregivers as well who do not get much social support. Alternately put, positive aspects of caregiving could be experienced by varied types of caregivers, including those who have good social support and those who do not have good social support. Positive aspects of caregiving were associated with lower perceived burden, which implies individuals who are too burdened with caring or substance dependence may not be able to perceive many positive aspects of caregiving. One would assume that beyond a point, the caregiving process may become too stressful, which may in turn challenge coping, and thus may result in lower appraised benefits from caregiving. The concept of eustress and distress may be applicable here, wherein beyond a point, caregiving may become distressing and lead to a lower appraisal of positive aspects of caregiving.

The present study suggests that overall, positive aspects of caregiving were perceived to be higher among the caregivers where the patients were abstinent from opioids on treatment. Active substance use may be strenuous for the caregiver (due to economic and interpersonal consequences of substance use), while helping the individual with substance dependence engage in treatment processes may be quite satisfying. One could argue that enabling the individual with opioid dependence to seek treatment and continue the journey of recovery may give a sense of purpose to the caregiver. Literature suggests that substance use severity may be related to the perceived burden, and this was echoed in the present study.[28] This further emphasizes the fact that caregivers perceive a better caregiving experience when individuals are not engaged actively in substance-taking behavior.

The characteristics of the sample may have some role in contextualizing the findings. The sample comprised exclusively caregivers of patients with opioid dependence, where the majority were middle-aged women. This is consistent with the profile of typical caregivers seen in similar studies carried out in the past.[13,29] Patients with opioid dependence in the study consisted only of males and were mostly accompanied by their mother or spouse. Many studies from the region have had a preponderance of males.[30,31] A higher proportion of patients included in the study had injection drug use as compared to previous studies from the region.[32,33] A significant proportion of the participants were from urban backgrounds, presumably as the treatment facility was in an urban locality.

Overall positive aspects of caregiving in addiction psychiatry can have significant implications for the caregiver and the patient. Caregiving can possibly improve the mental health and overall quality of life of caregivers, especially when the patients show fair or good outcomes and substance cessation. It has the potential to increase social support as caregivers may connect with others who are going through similar experiences. This may reduce feelings of isolation and provide a sense of belonging. Although caregiving can be stressful, it can also provide a sense of control and mastery over difficult situations in patients’ lives. For a patient with substance dependence, having a supportive caregiver can be an important motivating factor for recovery. Hence, recognizing and promoting positive aspects of caregiving can improve treatment outcomes for patients with opioid dependence. During counseling sessions, the appraisal of the positive aspects of caregiving may instill some hope in the caregivers. From a systemic point of view, designing treatment services keeping in mind the role of caregivers can help to make them feel welcome in addiction treatment facilities, and enable them to have a firm role in the management of the patient. The attitudinal transition of healthcare professionals to engage with caregivers of patients with substance dependence can possibly help to improve treatment outcomes.

The study has several limitations, which should be acknowledged. The study was restricted to family members who attended specialized addiction treatment centers in northern India. Therefore, the results cannot be applied to community-based individuals or other settings. Positive aspects of caregiving in this study were based on the dimensions of the scale SPACE. Qualitative studies may help to better understand the process and positive aspects of caregiving of how patients with substance dependence and caregivers relate to each other. There could have been respondent or observer biases. Furthermore, we were constrained by the caregiver who accompanied the patient to the treatment setting, whereas the primary caregiver could have been someone else. The effect of other substances on the burden and the positive aspects of caregiving could not be segregated in the present study, and the co-occurrence of different substance use disorders is a rule rather than an exception. In our study, due to the cross-sectional design, the causal relationship between the variables like positive aspects of caregiving, quality of life, burden, and social support cannot be inferred. Future research may employ a longitudinal design to examine additional factors across time, thereby enhancing our knowledge of how people perceive and cope with the process of caregiving.

To conclude, this study has highlighted the positive side of the caregiving experience of caregivers of patients with opioid dependence, including caregiver satisfaction, motivation for caregiving, personal gains, and social aspects of caring among caregivers. With the limitations of the study, positive aspects of caregiving seemed to be higher among those caregivers where the patients were abstinent from opioid use. Future studies may look at the longitudinal course of the positive aspects of caregiving. One could study the comparative account of positive aspects of caregivers across different caregivers. Studies can also look at the positive aspects of caregiving for other substance dependencies (like alcohol dependence), and for patients with dual disorders (comorbidity of substance use disorders and psychiatric disorders). The utility of positive aspects of caregiving in therapeutic approaches can be studied further. The present preliminary study could possibly help to comprehensively appraise the caregiving experience, which may potentially have some positive connotations as well.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.