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 Table of Contents  
REVIEW ARTICLE
Year : 2019  |  Volume : 35  |  Issue : 3  |  Page : 158-163

Substance use and family burden: A narrative review


1 Department of Psychiatry, Drug De-Addiction and Treatment Centre, Postgraduate Institute of Medical Education and Research, Chandigarh, India
2 Department of Psychiatry, All India Institute of Medical Sciences, Rishikesh, Uttarakhand, India

Date of Submission14-Jan-2018
Date of Decision19-Mar-2018
Date of Acceptance01-May-2018
Date of Web Publication30-Sep-2019

Correspondence Address:
Dr. Abhishek Ghosh
Department of Psychiatry, Drug De-Addiction and Treatment Centre, Postgraduate Institute of Medical Education and Research, Chandigarh
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijsp.ijsp_5_18

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  Abstract 


In the beginning, the concept of family burden was applied to chronic psychiatric disorders, especially schizophrenia, and substance abuse has been included much later. In this review, the association between burden of care and substance abuse is discussed. The predictors and the mediators of family burden are mentioned. Stress-coping-resilience model is invoked to understand the interaction among several factors. Finally, a possible way to deal with family burden is conjectured.

Keywords: Burden, caregiver, coping, stigma, stress, substance use


How to cite this article:
Mattoo SK, Ghosh A, Basu A. Substance use and family burden: A narrative review. Indian J Soc Psychiatry 2019;35:158-63

How to cite this URL:
Mattoo SK, Ghosh A, Basu A. Substance use and family burden: A narrative review. Indian J Soc Psychiatry [serial online] 2019 [cited 2019 Nov 12];35:158-63. Available from: http://www.indjsp.org/text.asp?2019/35/3/158/268339




  Introduction Top


Family has been defined in the Oxford dictionary as “(i) The body of persons who live in one house or under one head, including parents, children, servants. (ii) The group consisting of parents and their children, whether living together or not; in wider sense, all those who are nearly connected by blood or affinity. (iii) A person's children reared collectively. (iv) Those descended, or claiming descent from a common ancestor.”[1] From psychiatric point of view, family signifies a group of individuals who live together during the important phases of their lifetime and are bound to each other by biological and/or social and psychological relationships.[2],[3] Due to their close proximity and implied responsibility toward the patient, they have to pay some price as “caregivers.” One such impact is labeled as caregiver burden. “Burden of care” is defined as “the presence of problems, difficulties, or adverse events which affect the life (lives) of the psychiatric patients' significant others (e.g., members of the household and/or the family).”[4] There are two dimensions to the caregivers' burden: “objective burden” which includes the effects on the household and financial trouble and effects on health, children, family routine, and leisure time and “subjective burden” (subjective perception of burden).[5] In countries like India where interdependence takes precedence over autonomy and there is limited number of trained mental health professionals, caregivers and family members become practically synonymous.[6] The concept was originally introduced in the context of schizophrenia and coincided with the deinstitutionalization, when patients with schizophrenia were released in the community.[7] Drawing the analogy from schizophrenia, substance use disorder (SUD) too is a chronic, relapsing condition. Moreover, the treatment of substance use has observed a similar change from long-term rehabilitation center-based treatment to community-based outpatient management.[8] Therefore, it might not be imprudent to consider similar experience in the caregivers of those affected by SUD. However, the study on caregiver burden in SUD is a relatively newer phenomenon. For long, family members of patients with SUDs have been portrayed either as “causative” factors for being inadequate or noncaring parents or as “enablers” for adjusting to the substance use and becoming “co-dependent.”[9] Interestingly, the studies of families with mental illness also had seen a similar course, where initially Freida Fromm–Reichmann's theory of “schizophrenogenic mother,” which had implicated unconscious rejection by the mother of the child for the genesis of schizophrenia, was in vogue for a long time before researchers have focused on the “affected” family members.[10] Seemingly, SUD research is following the footsteps of its counterpart. The evidence accumulated till date is sparse to conduct a systematic review. A review, published in 2013, narrated some of the familial and social aspects of SUDs. However, this article has discussed predominantly the Western literature.[11] The scope of another review by Sarkar et al., although had focused on Indian context, was quite broad (family burden being a small subsection in the full article).[12]


  How to Measure Family Burden in Substance Use Disorder? Top


There are several instruments available to assess burden among the caregivers of persons with mental illness. However, only few of them have been used in caregivers of SUD. Family Burden Interview Schedule (FBIS), a semi-structured interview schedule to assess the burden placed on families of psychiatric patients living in the community, was originally developed for caregivers of patients with schizophrenia and its cross-cultural validity has been established.[13],[14],[15] FBIS covers six areas as follows: financial burden, disruption of family routine activities, disruption of family leisure, disruption of family interaction, effect on physical health, and effect on mental health. It consists of 24 items. The items are rated on a 3-point scale (mild, moderate, and severe). Inter-rater reliability and concurrent validity for all items are 0.78 and 0.72, respectively.[13] Global subjective burden is also measured to get an idea regarding the caregiver's perception, and a discrepancy between subjective and objective burden might indicate the level of tolerance or the problem-solving capability of the caregivers. Although primarily devised for the assessment of families of patients with schizophrenia, because of the generalizability of the items, FBIS could be used widely for all chronic mental or physical disorders. It is used in families with alcohol dependence and could also be used for other substance abuse-related disorders.[16] Another instrument, Family Experiences Interview Schedule (FEIS), has an established construct validity and reliability.[17] It has four subscales, namely, worry, displeasure, stigma, and impact. This is a Likert scale and rated by the caregiver on their experience during the past 12 months of the assessment. The frequency with which caregivers experienced worries concerning the care recipient (e.g., care recipient's safety, social life, or financial management) is measured by the “worry” subscale. The “displeasure” scale assesses negative feelings of the caregivers while caring the recipients and measures the extent of agreement with eight statements (e.g., disappointment, embarrassment, and feeling depressed). The “stigma” scale measures the caregivers' concerns about the way they would be perceived or treated by others in the society (e.g., worrying about disclosure, secretive behavior for alcohol or drug use, and worrying about being treated by friends differently). The “impact” scale denotes the degree of disruption in the caregiver's life as a result of their caregiving role. It is measured in four areas as follows: absenteeism or irregularity for school or work; disruptions in social and leisure activities; changes in household routine; and inadvertently failing to give other family members' time and attention. These two instruments have been used in the context of SUD.[18],[19] However, there are several other scales available for assessing family burden such as Family Evaluation Form, Social Behavior Assessment Scale, and Camberwell Family Interview.[20],[21],[22] These instruments are yet to be used in caregivers of SUD. One frequently encountered question is about choosing a suitable caregiver. The spouse in a conjugal home might come across as a “natural choice”; otherwise parents, living with the patient (especially for patients who are single) or any significant other nominated by the patient could be considered as care givers. The general recommendation is the following characteristics of the informants must be taken into account: relationship to the patient, frequency of contact with the patient, living/not living in the same household as the patient, and quality of interpersonal relationship with the patient.[4] In addition, it is necessary to detect burden which is “patient related,” i.e., arising due to patient's behavior. Patient relatedness is a subjective concept, which depends on the perception and attribution of the informant and thus subjected to bias. Multiple sources of informants, raters' own impression, and, at the end, summary and analysis of the results might be an effective way to deal with this problem.[4] However, studies on SUD did not take this point into consideration till now.
Table 1: Tools for the assessment of family burden in families with substance use disorders

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  Do the Caregivers of Substance Use Disorder Experience Burden? Top


Spouses of relapsed alcohol-dependent patients experience more depression than spouses of a control group or spouses of remitted patients. This depression might be an indicator for high family burden.[23] In a cross-sectional study from India on 120 treatment-seeking male patients with alcohol or opioid or both substance dependence, family burden has been assessed with the FBIS. Nearly 95%–100% of the families were observed to have moderate or severe level of family burden. “Disruption of family routine,” “financial burden,” “disruption of family interactions,” and “disruption of family leisure” were the most commonly reported affected items in the instrument.[24] Another study from the same center has compared family burden of caregivers between the groups of injecting drug users (IDUs) and the non-IDU (NIDUs), with forty patients in each group. Objective burden in the NIDU group was moderate. Results showed that caregivers of IDUs have greater subjective and objective burden as measured by the FBIS.[25] A third study from India from a different tertiary care center aimed to find burden in fifty spouses of opioid dependence syndrome. In this study, both subjective and objective family burden was perceived as “severe” by patients' spouses.[26] The National Survey on Extent Pattern and Trends of Drug Abuse in India assessed burden in women living with their substance-using spouse or son. It was a focused thematic study. Results suggested, high financial burden, disturbed family environment, and exposure to violence were associated with high family burden.[27] All these studies are on caregivers of male patients with substance dependence. However, there are a couple of studies on male caregivers of women with addiction. One such study including 82 male caregivers of women under substance use treatment reported moderate burden as assessed by the FEIS.[28]

Researchers have focused on family members of patients with dual diagnosis. Studies indicate that the person with dual diagnosis tends to be younger, male, and usually has poor living skills [29],[30] and poor performance in the areas of financial management, nutrition, housing, recreation, and employment. In addition, this group of patients often have disruptive behavior, make suicidal attempts, have poor medication and treatment compliance,[30],[31] and are twice as likely to be re-hospitalized as someone with a diagnosis of mental illness only.[32] Therefore, it is intuitive to think that caregivers of people with dual disorders might have to encounter more stress and burden. In a study comparing patients with dual diagnosis versus only mental illness, it was observed that both groups of family caregivers, including thirty patients in each group, experienced similar levels of social costs, but the emotional cost in terms of depression was greater for the families of persons with dual diagnosis.[33]

The evidence, so far, although limited, consistently demonstrated that caregivers of people with addictive disorders tend to have moderate-to-severe family burden, burden cuts across gender, and perhaps family members of patients with dual disorders have greater severity of burden.


  What Are the Predictors of Family Burden in Substance Use Disorder? Top


Research findings from the literature on psychiatric illness suggest both stressors and resources to be central to caregivers' burden.[4] Problematic behaviors associated with serious mental illness have been shown as the strongest predictor of family burden related to caregiving experience. Similar results also have been replicated across chronic illnesses.[34],[35] Inadequacy of perceived informal and formal social support is another important predictor in the context of mental illness. These factors interact with the “stress” in the family. The components or sources of stress identified in people with mental illness and SUD are isolation; coping with behavioral problems; relationship problems between family members; family violence; not having enough help in providing care for their relative; and insufficient help from treatment professionals. Recognized impact of these stresses includes several psychological reactions (worry, anger, guilt, and shame), practical problems (financial strain), interpersonal difficulties (marital dissatisfaction and discord and physical victimization), and general effects (a decrease in the quality of life and increased hopelessness of family members, negative impacts on the normal growth and development of children in the family, and stress induced by the physical presence of person with substance use in the family).[36],[37] Therefore, interaction between behavioral problems, stress, and available resources to deal with the same predicts the overall family burden. Due to their interdependent nature, some of the components can also be a part of family burden assessment itself.

A study had investigated 82 women in substance use treatment and their family members. Presence of behavioral problems among the patients and lack of social support among caregivers predicted higher levels of burden in the family. However, overall social support did not predict the severity of caregiver burden. Nevertheless, caregiver-specific social support and support from the care recipient played an important role. Presence of dual diagnosis was not predictive of caregiver burden.[33] Indian studies have consistently showed that the family burden was not associated with age, education, or duration of dependence of the patients. Moreover, family size, type of caregiver, or caregiver's education too would not predict burden.[24],[25],[26] However, rural residence, in conjunction with having a lower income, was associated with greater caregivers' burden.[24] Authors explain that “Rural patients staying in extended families with higher family history/risk of substance dependence reflect a combined effect of family environment and its impact on health of the family members.” Lower income may affect treatment seeking and thus influence the outcome of SUD or its impact on the family members.


  Study of Other Variables Related to Family Burden in Substance Use Disorder Top


There are various other factors which may be contributing to the family burden. Violence by the person using substance on the caregiver is one of them. Extensive literature is available exploring the issue of violence in the family and substance use. However, this is outside the mandate of the present review. Data from the National Co-morbidity Survey-Replication showed that substance use increases the odds of intimate partner violence (IPV).[38] Both studies from the Batterer intervention program and substance use treatment programs in the US have shown a consistent association between IPV and substance use.[39] Moreover, the odd of IPV increases 8–10 times on the day of substance use.[39] In a clinic-based study from India on the spouses of those with either alcohol or opioid dependence, IPV was found in more than half of the sample and it was associated with higher age of husband, lower education or unemployment of either spouse, and lower income of family.[40] This finding is not an isolated one, a nationwide study in the US showed that the relationship between drunkenness and IPV varies by social class. Drinking was shown to mediate IPV among low-income men; men with a history of frequent drunkenness would be more likely to be involved in IPV compared to those without a history of getting drunk (40% vs. 2%). This association was also true for the higher income group, although the magnitude of association is lower (9% vs. 2%). These data seem to be compatible with the common public perception that “men who batter are drunken bums.[41] Similar profile also has been observed to be associated with high family burden, as has been already discussed in the present article. Although it has not been studied scientifically, it could be conjectured that the victims of IPV would have more burden of care due to increase in “stress” in the interpersonal relationship.

Another factor which might mediate the burden of care could be stigma in the family members of patients with SUDs. Stigma is not only experienced by the patients with mental illness, but also the caregivers too might perceive this social mark of disgrace. Stigma, when present in the caregivers, is labeled as courtesy stigma or affiliate stigma. Affiliate or courtesy stigma happens when someone in the family feels stigmatized because of his/her association with the patient. SUD is often considered a stigmatizing condition, probably due to its association with delinquent activities and presence of other stigmatizing health conditions such as HIV. Family members of the substance user are also likely to face courtesy stigma, due to being in association with the substance user. Stigma experienced by family members can depend on many factors such as behavioral problems exhibited by the substance user or incarceration due to behavioral problems.[33] This affiliate stigma is linked with withdrawal from social relations and alienation from the patients in order to avoid association. In addition, unhappy and helpless attitude about their affiliation with the stigmatized individual has also been observed.[42] Both of these behavioral and psychological reactions of the caregiver may increase the burden of care in the family.


  How Can Burden of Care Be Reduced? Top


Literature from mental illness indicates that improvement of the coping skills may reduce burden in the caregiver. Although no direct evidence is available for SUDs, similar results are expected. Al Anon is an International self-help fellowship which is based on the principles and philosophy of Alcoholics Anonymous. It was developed to help and support the affected family members of people who are using alcohol or other substances.[43] The active ingredients of Al Anon as described by Moos are bonding among the group members, the provision of role models, involvement in rewarding activities, and enhancement of the coping skill and self-efficacy.[44] The amount of empirical research aiming to find the outcome of Al Anon is limited. Observational studies and reviews showed that Al Anon attendance of the wives significantly improves their coping skills and reduces family stress, both substance related and unrelated.[45] Duration of attendance in Al Anon correlated with the decrease in the negative coping skills.[46] In addition, decrease in maladaptive coping improved the duration of abstinence in their husbands.[47] Greatest improvement in coping was seen to occur in the first 1 year.[48] Evidence also exists from the randomized controlled trial. Family members who were randomized to attend the Al Anon were found to have less loneliness, irritability, and self-blame as compared to the wait-listed controls.[49] Qualitative studies in this area have demonstrated that there has been significant relief from isolation, anger, and gain of strength and hope. Studies also showed a decrease in other negative feelings such as fear, hurt, shame, frustration, and worry, as well as violence toward the patient and suicidal ideas.[42],[50] From the aforementioned review on Al Anon, it is quite evident that Al Anon fellowship would also reduce the burden of care indirectly by reducing stress, alienation, and negative psychological reaction and by improving coping skills. Another special therapy directed to the spouse and family members of patients with SUD was developed by Rychtarik and McGillicuddy in 2005, the coping skill therapy (CST).[51] CST acts by improving coping skill among family members, when exposed to stress as a result of the substance-using partner. In one study comparing the effectiveness of CST versus Al Anon, it was revealed that both substance use and violence by the patient were significantly less in the CST group. Acquisition and exercise of adaptive coping skills might in turn decrease the burden of care [Figure 1].
Figure 1: Predictors of Family Burden - Caregivers of people with substance use disorders encounter psychological distress, financial problem, violence, and stigma, all these might get complicated with the presence of another psychiatric disorder in the patients. Social support, adaptive coping skills, and self-efficacy might provide resilience for the caregivers. Finally, it is the balance between the stress and resilience, which would determine the mental health of the caregivers

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  Conclusion Top


Research focus on family burden and related issues in SUD are a relatively recent phenomenon. Most of the researches available are based on clinic-based population, with limited generalizability. There is no specific instrument available to measure family burden in this special population. Qualitative research must be undertaken first to realize and then to device assessment tools to study this specific construct. The interaction between burden of care, stigma, coping skills, and violence should be understood through empirical studies. Similarly, the relationship between treatment and family burden must also be studied. India, for its special demographic structure where family plays a vital role as caregivers for people with SUDs, is a “prototypical” state to conduct research in this area. However, because of the diversity seen in terms of expectation, attitude, and mode of functioning among the family members across the globe, it would be imperative to collect data from varied culture and settings.

Author contributions

SKM involved in conception of the draft and providing an outline for the same, AG involved in writing the first draft of the manuscript, and AB proposed the models of the figures/boxes and reviewed the literature.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
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