ACCORDING to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V), opioid use disorder (OUD) is “a problematic pattern of opioid use leading to clinically significant impairment or distress.”1(p541) Substance use disorder (SUD) often involves the use of several different substances, while OUD “reflects compulsive, prolonged self-administration of opioid substances that are used of no legitimate medical purpose ... (or) in doses greatly in excess of the amount needed.”1(p542) The prevalence of opioid misuse and OUD has continued to rise over the past decade creating burden for family members and the larger society. In 2019, an estimated 10 million people were diagnosed with OUD and 9.5 million people had co-occurring mental illness and SUD.2 The National Institute on Drug Abuse estimated the opioid-related death toll for 2019 to be 49 860 overdose deaths.3 The cost of the US opioid epidemic in 2017 was reported as $1021 billion, with an estimated $471 billion spent on treatment of OUD and $550 billion for fatal opioid overdose deaths.4
Family caregivers assume the responsibility for emotional and psychosocial support, financial support, assistance with transportation, and involvement in the health care and treatment plan of the care recipient.5 The caregiving experience with OUD is complicated because of tremendous public stigma and societal compassion fatigue.6,7 People with OUD are highly stigmatized and caregivers of this population receive limited
Statements of Significance
What is known or assumed to be true about this topic?
There is a growing body of research in SUDs that evaluates burden experienced by family caregivers. Family caregivers who are stressed, overburdened, and do not perceive adequate support may suffer negative effects on their emotional and physical well-being that prevent them from providing care. Yet, family caregivers receive inadequate support from health care providers and often face overwhelming societal stigma related to caring for a person with SUD.
What this article adds:
In contrast, caregivers with family support, access to community resources, and coping strategies are more likely to be resilient. However, there is a lack of theoretical frameworks to guide research that is specific to improving the health outcomes of family caregivers of individuals with OUD. Current theoretical frameworks focus on how caregiver support impacts outcomes related to the care recipient, such as psychiatric symptoms, engagement in treatment, medication compliance, and sustained abstinence. This article describes the development of the Model of Family Caregiver Resilience and Burden in Opioid Use Disorder for future research on health outcomes that impact family caregivers' mental and physical well-being, so they can continue to fulfill an essential societal role. The model articulates insights gained from nursing research and nurse-caregiver interactions that could be instrumental in decreasing caregiver burden and the associated poor emotional and physical health outcomes currently observed in this population. The ability of nurses to identify important life patterns could improve health and behavioral outcomes for these caregivers.
support from the health care community and experience substantial burden related to finances and disruptive care recipient behaviors.8 Management of OUD often focuses on the individual with the disorder; however, recent research demonstrates it is essential to provide care to the whole family because of the devastating effects of OUD.9 Additionally, the COVID-19 pandemic limited access to treatment and created a lack of transitional community resources that further increased caregiver burden.10
There is a growing body of research in SUDs that evaluates burden experienced by family caregivers. Research findings indicated caregivers who are stressed, overburdened, and do not perceive adequate support may suffer negative effects on their emotional and physical well-being that prevent them from providing care.5,6 In contrast, caregivers with family support, access to community resources, and coping strategies are more likely to be resilient.5,11 However, there is a lack of theoretical frameworks to guide research that is specific to improving the health outcomes of family caregivers of individuals with OUD. Current theoretical frameworks focus on how caregiver support and duties impact outcomes related to the care recipient, such as psychiatric symptoms, engagement in treatment, medication compliance, and sustained abstinence.12,13 The aim of this article is to describe the development of the Model of Family Caregiver Resilience and Burden in Opioid Use Disorder for future research on health outcomes that impact family caregivers' mental and physical well-being, so they can continue to fulfill an essential societal role.
METHODS
This theory synthesis was guided by Walker and Avant's methodological approach.14 The 3 steps involved in a theory synthesis include: “(a) specifying focal concepts to serve as anchors for the synthesized theory, (b) reviewing the literature to identify factors related to the focal concepts and to specify the nature of relationships, and (c) organizing concepts and statements into an integrated and efficient representation of the phenomena of interest.”14(p149) A theory synthesis is constructed from a base of empirical evidence, such as quantitative and qualitative research and other theoretical and database publications.14 Two theoretical frameworks were identified as most relevant for the development of a theory synthesis to guide research on caregiver resilience and burden in family caregivers of individuals with OUD. The first theoretical framework, Conceptual Framework for Studying Family Involvement with Adults with Co-Occurring Substance and Mental Disorders (Figure 1), identifies factors that influence family stressors, family members' health and well-being, involvement with the client and their health care treatment, and social-contextual factors that influence client outcomes.13 The Resiliency Model was the second theory examined for the concept of caregiver resilience, which was not incorporated in the first theory.15 Additional concepts were selected from a review of empirical literature that were specific to caring for an individual with OUD, such as caregiver burden, caregiver stress, caregiver support, and care recipient behaviors of opioid misuse and overdose.
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Figure 1.: Conceptual framework for studying family involvement with adults with co-occurring substance and mental disorders. Permission obtained to reprint from Townsend et al.
13The analysis and synthesis of the concepts and philosophical assumptions of the 2 theoretical frameworks led to the development of a new theoretical framework: the Model of Family Caregiver Resilience and Burden in Opioid Use Disorder (Figure 2).5 This article describes the new theory and its theoretical origins, the Conceptual Framework for Studying Family Involvement with Adults with Co-Occurring Substance and Mental Disorders and the Resilience Model. The article also discusses how the newly created theory identified predictors of caregiver resilience and burden and the nursing implications for research.
Figure 2.: Original model. Permission obtained to reprint from Tyo et al.
21THEORETICAL OVERVIEW
Family involvement with co-occurring substance and mental disorders
The conceptual model by Townsend et al13 proposes the following factors contribute to client outcomes: family stressors, family health and well-being, family involvement with care recipient, family involvement in treatment process, and social-contextual factors (Figure 1). The model was informed by the Stress Process Theory, the researchers' previous experiential work, and variables that showed the most robust relationships from previous research.13 The framework portrays the stressors and social-contextual factors that impact the physical and emotional health of the involved family members and their subsequent influence on client outcomes.13
The major focus of this conceptual framework is on the 2 primary sources of stress for family members involved in the care of a person with OUD and mental health disorders: care recipient behavior problems and treatment motivation. The model operationalizes stressors as client behavioral problems (mood swings, unpredictable behavior, and social isolation) and treatment motivation (desire and self-efficacy). Other variables include family member well-being (physical health, life satisfaction, burden, depressive symptoms, and substance abuse), family involvement in treatment (amount, type, satisfaction, and future), and family involvement with the care recipient (amount, type, satisfaction, and quality of dyad). Treatment is operationalized in terms of the quantity, nature, and perceived quality of treatment. Social-contextual factors are conceptualized as those specific to the individual and family (demographics and characteristics) and those related to the treatment system (characteristics and setting). Social-contextual factors are recognized as influencing all elements of the model. The family members' well-being and stressors are hypothesized by the researchers to influence each other, involvement with the care recipient, and involvement in treatment. Finally, client outcomes are conceptualized as quality of life, substance use, level of functioning, psychiatric symptoms, treatment adherence, perceived treatment outcome, and institutional status.13
The Resiliency Model
The Resiliency Model was designed to focus on “the interaction between individuals and environmental circumstances that promote resiliency.”15(p33) The key concepts of the Resiliency Model are biopsychospiritual homeostasis, life events, biopsychospiritual protective factors, interaction, disruption, disorganization, reintegration, enviro-social protective, enhancing, supportive, and reintegrative processes.15 In the model, people start at biopsychospiritual homeostasis, which is characterized as their ideal state of being. Life events, such as challenges, stressors, or experiences, create a disruption in the dynamic homeostasis. The individual then becomes disorganized, which is conceptualized as a temporary state in which dynamic homeostasis becomes disrupted. The individual is then forced to reintegrate and reorganize their life in 1 of 4 ways: resilient, homeostatic, maladaptive, or dysfunctional. Protective factors are the processes and supports that help the person negotiate these life events. Protective factors associated with resilience include: (1) dispositional attributes of the individual, (2) supportive family relations, and (3) availability and utilization of external support resources. After reintegration, the resilient person emerges in a better state of being.15
The Resiliency Model proposes environmental conditions have an impact on the individual's resilience and can serve as “enviro-social” processes of enhancing, protecting, supporting, and reintegrating.15(p35) Enviro-social factors are those related to the individuals' immediate living situations, both people and places. Enviro-social protective processes help buffer the impact of life events. The notion of protective processes implies it is easier for individuals to cope if they are in a safe place with familiar and comforting items. Enviro-social enhancing processes are self-esteem and efficacy-enhancing strategies that individuals can learn to develop skills for negotiating life events, rather than buffering them from the negative impact.15 Enviro-social supportive processes are the efforts made by other people to protect and support the individual during the event. Enviro-social reintegrating processes include the support provided to help put the pieces of an individual's life back together.15
Empirical data sources
The empirical literature was examined to identify potential relationships between concepts in the newly synthesized theory. A literature search was conducted using PubMed, CINAHL, and PsychINFO. A combination of search terms included caregiver and opioid; caregiver burden and opioid; caregiver and addiction; caregiver burden among substance abuse; caregiver AND opioid addiction OR opioid; caregiver burden AND opioid misuse. An ancestry search of key research findings was also conducted. The search was limited to English language articles published in peer-reviewed journals. A total of 1203 articles were reviewed using the stated inclusion and exclusion criteria: 1158 were excluded after a review of titles and abstracts. The authors assessed 45 full-text studies for eligibility. Forty-one research studies subsequently met inclusion. Additional concepts were selected from the literature for inclusion in the newly synthesized theory: (a) caregiver characteristics, (b) caregiver support, (c) caregiver stressors, (d) dyad characteristics, (e) caregiver resilience, and (f) caregiver burden.
THEORETICAL SYNTHESIS
Identify focal concepts, related factors, and conceptual relationships
Using the Conceptual Framework for Studying Family Involvement with Adults with Co-Occurring Substance and Mental Disorders13 as a foundation, the original concepts of family stressors, family well-being, family involvement in the treatment plan, and social-contextual factors were sustained in the new model, but the scope was changed to focus on caregiver outcomes rather than client outcomes. The theoretical framework was then adapted to the population of caregivers of individuals with OUD by incorporating care recipient stressors specific to OUD, the concepts of caregiver resilience and burden as outcome variables, and findings from empirical data on the effects of opioid use on family members. Conceptual definitions are presented in the Table. The selected concepts are described and rationale for inclusion in the new theory provided next.
Table. -
Conceptual Definitions
| Concept |
Conceptual Definition |
| Family caregiver |
Informal support persons, such as family members or friends, who are invested in the well-being of the care recipient |
| Caregiving duties |
Emotional and psychosocial support, financial support, assistance with transportation, medication management, and involvement in the health care and treatment plan of the care recipient |
| Caregiver characteristics |
Characteristics included age, gender, marital status, household income, employment, and physical health and mental health |
| Caregiver support |
Intrapersonal support from family, friends, and colleagues and interprofessional support received from support groups and health care professionals |
| Caregiver stressors |
Care recipient characteristics that create stress for caregivers included care recipient behavioral problems, care recipient serious mental illness, stigma, care recipient substance use, and care recipient overdose |
| Dyad characteristics |
The dyad includes the duration of the caregiving experience, the type of dyad interactions, and the caregivers' positive and negative perceptions about the relationship |
| Caregiver resilience |
Caregiver resilience is the ability to move past a difficult life event by acquiring additional support and coping skills necessary to reestablish balance among caregiving responsibilities and life |
| Caregiver burden |
Caregiver burden is the extent to which caregivers recognize the emotional and physical distress caused by their caregiving activities and the impact it has on their physical and mental well-being, finances, and social life. |
Caregiver characteristics
Family caregivers are defined as informal support persons, such as family members or friends who are invested in the well-being of the care recipient. Family caregivers are also identified as “informal caregivers,” “affected family members,” or “opioid-impacted” family members in the literature.5,12,13,16–18 Family caregivers assume the responsibility for emotional and psychosocial support, financial support, assistance with transportation, and involvement in the health care and treatment plan of the care recipient.5,17 Findings from the research indicated characteristics of physical and mental well-being, income, support, and less stigma were significant predictors of caregiver resilience; while stress, dyadic interaction, and supervision of care recipient problematic behaviors were the strongest predictors of caregiver burden.5 A review of empirical literature indicated age, gender, and family dyadic role may also be important characteristics in OUD research. For example, women, primarily mothers, assume responsibility for providing care and experience higher levels of burden despite sharing some tasks with other family members.19–21
Caregiver support
Caregiver support is a moderating variable. Both adequate and inadequate support can influence caregiver resilience and burden. Caregivers receiving support are often more resilient.5 However, there is a lack of social support and community resources available to this caregiver population.8,18 Negative media depictions of persons with OUD have contributed to societal compassion fatigue, which leads to limited social support.7 Additional research findings suggest caregivers of persons with co-occurring mental health and SUD were more likely to need greater emotional support, including professional counseling, than caregivers of persons with physical conditions.22 Caregivers who are more resilient are better able to seek support and provide support to others, while caregiver burden can prevent or encourage the caregiver to access support. However, these family caregivers do not often receive the necessary support from health care teams.17,23–25 One reason may be the focus of treatment programs is on client outcomes and not how the disorder affects the family.9
Caregiver stressors/care recipient characteristics
Stressors reported in the OUD literature by family caregivers included isolation, poor coping, relationship problems, violence, and inadequate support and help from medical professionals.17 Family involvement in medication management can contribute to feelings of stress and conflict in family relationships.26 Care recipient behavioral problems also contribute to significant amounts of stress and burden for family caregivers. Biegel et al17 reported the most problematic recipient behaviors were inability to manage money, too much unproductive time, dependence, and symptoms of poor mental health. OUD affects family routines because the care recipient's intoxication and apathetic behavior interrupted rituals, mealtime, and celebrations.21
Stigma also complicates OUD and negatively affects families. Stigma leads to avoidance, social exclusion, and gaps in treatment for individuals with SUD and their families.27 Higher levels of stigma and displeasure were found in caregivers who received less support from family or friends.17 In contrast, research findings suggested caregivers' receiving more social support experienced lower levels of stigma.28
No literature was available on the level of caregiver burden or stress associated with the number of times a care recipient received treatment for overdose. Opioid overdose is a substantial and traumatic event that impacts a caregiver's mental and social outcomes. Theoretically, caregivers who are repeatedly traumatized may reach a point where they are so overburdened, they are no longer able to cope and provide support and are at greater risk of poor mental health, maladaptive behavior, or becoming withdrawn.
Dyad characteristics
The dyad characteristics include the duration of the caregiving experience, the type of dyad (parent, child, sibling, spouse/partner, other kin, or friend) interactions, the caregivers' positive and negative perceptions about the relationship, and the relationship with the health care treatment team. OUD can influence family dyadic interactions by increasing levels of objective and subjective burden.6,19 Family relationships in OUD suffer from emotional exhaustion, depression, feelings of isolation, neglect, anger, physical abuse, sexual abuse, and stigmatization.6
Caregiver resilience
Resilience was added as a predictive outcome because clinical research suggests positive psychology, such as resilience training, promotes health by focusing on positive emotions and optimal functioning rather than the pathology of mental illness or negative emotions.29 Positive psychology has also been linked to better immune functioning and increased longevity.29 People who are more resilient are better able to adapt and may have fewer negative outcomes than people who are less resilient.29,30 Recent research by the University of Pennsylvania on resilience training showed an increase in well-being, optimism, and hope and a decrease in psychological symptoms associated with stress, SUD, and feelings of hopelessness when people participated in resilience training programs.30
The Resiliency Model was chosen because it was previously used to study treatment outcomes in mental health populations and stress reactions.31 The concepts are discrete, observable, and can be generalized to multiple populations. The conceptual definition of resilience and the notion it is an attribute that can change over time was also retained from the Resiliency Model. Resilience is defined as a complex process for coping with disruptive, stressful, or challenging life events in a manner that provides individuals with added protective and coping skills over and above what they had prior to the disruptive event.15 The Resiliency Model emphasizes the environmental and social influences on a person's resilience, such as protective factors. Such protective factors are essential to family coping in OUD.
In the new model, caregiver resilience is the ability to move past a difficult life event by acquiring additional support and coping skills necessary to reestablish balance among caregiving responsibilities and life. The goal of caregiver resilience is to provide additional support and foster coping skills, so that families can move past a difficult life event and reestablish balance in their life.8 Caregivers who perceive adequate support and have their needs met are more likely to be resilient and able to continue with caregiving duties.5,32 However, resilience is a multidimensional, complex characteristic that varies among people, time, and context.31 Caregiver resilience may diminish in times of extreme stress, such as treatment for overdose or incarceration without adequate support.
Caregiver burden
Caregiver burden is prominent in the literature for caregivers of individuals with OUDs and serious mental illness and subsequently added to the model as another predictive outcome. Family caregivers often experience both subjective and objective burden. Caregiver burden is operationalized as the extent to which caregivers recognize the emotional and physical distress caused by their caregiving activities and the impact it has on their financial status and social life.19,23
Construct an integrated framework
The new integrated model emerged as the Model of Family Caregiver Resilience and Burden in Opioid Use Disorder and is depicted in Figure 2. The theoretical framework was tested during a PhD dissertation course at the University of Massachusetts Dartmouth and revised based on findings from the multiple regression and the qualitative data in Figure 3. The newly synthesized theory has 4 major philosophical assumptions: (a) caregiver, care recipient, and dyad characteristics and the amount of support received influence the amount of caregiver resilience and burden experienced; (b) care recipient behavioral problems and stigma contribute to higher levels of caregiver burden; (c) caregivers who are overburdened, stressed, stigmatized, and those without adequate support experience more subjective and objective caregiver burden; and (d) caregivers in good physical and mental health and those who receive support and can cope with their situation are more likely to be resilient.
Figure 3.: Final revised model.
NURSING IMPLICATIONS
An evidence-based framework that incorporates support for family members of persons with OUD needed to be developed and widely disseminated. The model is intended to facilitate identification of important life patterns that influence the health and behavioral outcomes for these family caregivers. Caregivers with adequate support and coping skills are more likely to be resilient; however, caregivers who are overburdened, stressed, stigmatized, and those without adequate support experience greater caregiver burden.5 The Model of Family Caregiver Resilience and Burden in Opioid Use Disorder emphasizes the critical impact of caregiving on the health and well-being of family caregivers and offers several implications for research, policy, and practice. The model is derived from empirical literature and research; however, translational research is needed to increase resilience and facilitate coping in this population of frequently forgotten family caregivers. The intrinsic and extrinsic factors associated with caregiver resilience or what resilience strategies are effective in this population remain unanswered. It is important to improve the mental and physical well-being of family caregivers because research findings suggest caregiver well-being and support are directly connected to care recipient outcomes.12,13,24 The newly synthesized theoretical framework can help clinical providers to understand the necessity of screening family caregivers for negative health outcomes, such as caregiver burden, psychosocial trauma, or secondary stress and connecting those at risk with social support and other types of community resources.
LIMITATIONS
According to Walker and Avant,14 synthesized theories are limited in their generalizability by the quality of evidence upon which it is based, and testing is required to reaffirm empirical validity. Some of the empirical data used in the construction of the new theoretical model are from mental health and SUD populations and not specifically OUD. In addition, the literature search was restricted to peer-reviewed articles published in English. Finally, the new theory does not include all possible relationships or outcomes. For example, the model does not provide a clear conceptual definition of how resilience transcends time or how multiple negative life events affect an individual's ability to be resilient. In individuals with OUD, relapse and overdose can be recurrent traumatic experiences for both the caregiver and care recipient and more research is needed to understand this phenomenon.
CONCLUSIONS
Family caregiver resilience and burden are not individual matters; these predictive variables involve several factors including coping skills, family support, and multiple community and policy factors. Understanding the relationship between caregiving outcomes and protective factors could help nurses to develop evidence-based interventions to increase resiliency and decrease the psychosocial trauma and stress associated with caregiver burden.
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