Understanding family perspectives on supported employment

Abstract

Background:

One integral way by which individuals in recovery pursue meaning and productivity in their lives is via employment. Unfortunately, the vast majority of individuals with serious mental illness (SMI) who express the desire to work remain unemployed. Families have the potential to play an important role in the domain of supported employment (SE), though may not have the knowledge or skills to do so.

Aims:

This quantitative study aimed to better understand the perspectives of family members on the role of employment in recovery and the barriers faced by their loved ones in pursuing work.

Method:

Participants included 86 family members of individuals with SMI who were affiliated with their state NAMI Chapter and agreed to take part in an online survey. Wilcoxon signed-rank tests were used to determine meaningful differences between the highest and lowest ranked statements for each main research question.

Results:

Family members recognize that employment is important to recovery and offers individuals with SMI a valued social role. Relative to other factors, financial independence and being employed in a competitive job were viewed as less important to recovery. The most salient barriers to employment included stable housing, need for transportation, concerns about losing benefits, low self-esteem, and medication side effects.

Conclusions:

While family members can appreciate the importance of SE and their loved ones’ desire to work, they still tend to rank other factors as more integral to recovery. This underscores the need for additional education about the potential for employment to facilitate these other factors in recovery.

Keywords

Supported employment recovery serious mental illness families

For the last few decades, a central tenet of the Recovery Movement has been that individuals with serious mental illness (SMI) should be treated with equity, such that they have access to the same rights and opportunities as all others in society (Costa et al., 2017; Davidson, 2016). Moreover, the Recovery Movement has upheld and asserted that individuals with SMI can and do lead meaningful, productive lives even when continuing to experience psychiatric symptoms. One integral way in which individuals in recovery create meaning in their lives and pursue productivity is via employment. Extant research has offered support for the role of employment not only in addressing individuals’ material or financial needs, but also in boosting self-esteem, decreasing social isolation, and improving quality of life (Bouwmans, Sonneville, Mulder, & Hakkaart-van Roijen, 2015; Dunn, Wewiorski, & Rogers, 2008). Employment has also been shown to help reduce psychiatric symptoms and mental health services use (Dunn et al., 2008; Mueser, Drake, & Bond, 2016). Importantly, qualitative research has offered support for the role of employment in recovery even during challenging times when individuals may be experiencing heightened psychological distress and/or or unstable housing (Dunn et al., 2008). This suggests that securing employment remains an important goal irrespective of individuals’ point in recovery. Yet, despite these well-documented benefits, the vast majority of individuals with SMI who express the desire to work remains unemployed (Drake, Bond, Goldman, Hogan, & Karakus, 2016; Mueser & McGurk, 2014).

More recently, the Individual Placement and Support (IPS) model of supported employment (SE) has come to represent the most successful strategy by which to assist persons with SMI to obtain and retain employment, thus reducing the discrepancy between those who want to work and those who are gainfully employed. Reviews of the IPS literature suggest that an average of between 50% and 60% of individuals who engage with this form of SE service obtain competitive employment (Bond, Drake, & Becker, 2012; Marshall et al., 2014; Modini et al., 2016; Mueser, Bond, Drake, & Becker, 1997). Nonetheless, disseminating this model across systems of care and securing necessary funding within such systems remain challenging (Costa et al., 2017; Drake et al., 2016). In addition, accessing SE is often contingent upon appropriate referrals made by mental health providers, whose own attitudes and beliefs may serve as barriers to proper linkage (Costa et al., 2017). An overreliance on providers to determine when linkage to vocational services is appropriate conflicts with client-centered services and a shared decision-making process wherein, with the appropriate information, clients can make their own choices about the role of employment in their recovery (Mueser et al., 1997). Given these limitations, more research is needed to explore additional avenues by which to support persons with SMI in pursuing opportunities for employment. One such potential avenue points to the potential role of family members in supporting their loved ones in recovery to seek employment.

The significant impact of SMI on family systems has been well-documented, particularly among family members who serve as caregivers for their loved ones (Saunders, 2003; Wirsén et al., 2017). This research has highlighted the role of family in providing emotional, social, and material/financial support for loved ones with SMI – a multitude of supports that can both improve treatment and recovery outcomes, while also lessening considerable burden (Dixon et al., 2001; McFarlane, Dixon, Lukens, & Lucksted, 2003). In the last two decades, evidence-based practices for the care of persons with SMI has expanded to include the involvement of family in recovery, with the aims of enhancing collaboration in care-planning and reducing caregiver suffering or burden (Dixon et al., 2001; Mueser, Torrey, Lynde, Singer, & Drake, 2003). There has been less focus on conducting research to examine the role of family members in the implementation of psychosocial rehabilitation efforts, such as SE, for persons with SMI (McFarlane et al., 2000). The limited research that has been done suggested that family members may not have accurate information pertaining to process and effectiveness of SE and, perhaps as a result, discourage their loved ones from pursuing employment due to concerns about increased stress (Bond et al., 2001). Family members may also not have been included or considered as an important part of an individual’s support network, and/or know how to facilitate their loved one’s efforts to secure employment (Bond et al., 2001). In sum, while families have the potential to play an integral role in the domain of SE, they may not have the knowledge, skills, or opportunities to do so. Additional research is thus needed to better understand the perspectives of family members on the role of employment in recovery and the barriers faced by their loved ones in pursuing work. This article seeks to address this gap in our understanding by exploring these questions among families.

Methods

Participants

Participants included 86 family members of individuals with SMI who were affiliated with their state NAMI Chapter and agreed to take part in a survey on the role of employment in recovery (see Table 1 for sociodemographic characteristics).

Table 1.

Demographic characteristics of family members (N = 86).

Characteristic	n	%
Age
25–34	14	16
35–44	8	9
45–54	15	17
55–64	29	34
65 or over	20	23
Gender
Male	15	17
Female	71	83
Hispanic or Latino origin
Yes	3	4
No	81	94
Race
American Indian or Alaska Native	1	1
Asian	2	2
Black or African American	1	1
White	82	95
Education
High school or GED	1	1
Some college	11	13
2-year college degree	4	5
4-year college degree	30	35
Professional degree	5	6

Materials

The current project utilizes data from 86 family members of individuals with SMI who were affiliated with their state NAMI Chapter in Connecticut. All participants agreed to complete The Family Survey, which was developed for use in this study to capture families’ views about the role of employment in recovery for their loved ones with SMI. As part of a larger study examining the perspectives of providers, families, and consumers on SE, a provider survey was developed in a participatory way to include input from persons in recovery, employment specialists, family members, providers, and advocates. The original provider survey article describes the initial process for developing this measure (Costa et al., 2017). It is important to acknowledge that stakeholders in the state of Connecticut are highly invested in implementing SE and have been committed to doing so for many years. Creating this survey in a participatory way ensured that we could compare findings across three important stakeholder groups (e.g. providers, families, and persons in recovery) to better understand attitudes toward SE. We, in concert with CT NAMI, adapted the provider survey for use in our study.

For the family member survey, respondents were first asked to indicate the degree to which they believed various elements were important to recovery for individuals with SMI using a 5-point Likert-type scale (1 = not at all important, 5 = very important). The Family Survey then explored family members’ views on a range of topics pertaining specifically to employment and recovery, including the following: the perceived relationships between SMI, employment, and recovery; the role of family members in promoting employment for loved ones in recovery; and factors preventing individuals with SMI from working. Family members indicated the degree to which they agreed with a list of statements spanning these topics using a 5-point Likert-type scale (1 = fully disagree, 5 = fully agree). Finally, family members were asked to indicate the degree to which they believed numerous factors served as barriers to individuals with SMI obtaining and/or retaining a job. These items were also measured using a 5-point Likert-type scale (1 = not at all a challenge, 5 = very much of a challenge). The highest and lowest rated statements and barriers can be seen in Tables 4 and 5.

Procedure

All participants were affiliated with their state NAMI Chapter and had agreed to be contacted via the organization’s listserv. Individuals received an email from administrators on the leadership board at the NAMI Chapter that described the purpose of the research study and included a link for an online survey using the Qualtrics platform. All participants agreed to complete The Family Survey on a voluntary basis without any monetary incentive. The Qualtrics software automatically transferred the information from each survey to a database as the survey was being completed; individual surveys were labeled according to de-identified number IDs. Once the survey was closed, the database was downloaded for analysis. As the data that were collected and analyzed for the purposes of these analyses were de-identified, this research study was determined to be exempt from formal review by the university Institutional Review Board.

Data analysis

IBM SPSS Statistics 24 software was used to analyze the data. Sociodemographic characteristics of participants were summarized using descriptive statistics. Means for the ratings of each statement in the survey were determined; summary data pertaining to the most and least commonly endorsed beliefs about SMI, recovery, and employment are included for descriptive purposes only. The remaining data were organized according to the highest and lowest ranked statements for each main research question (e.g. ‘What are the most important components of recovery?’; ‘Which barriers pose the greatest challenge to persons with SMI in obtaining/retaining a job?’). The five highest rated statements were compared with the lowest five rated statements for each main question. Wilcoxon signed-rank tests were utilized to determine statistical significance between the highest and lowest ranked variables for each research question, with levels of significant established at p < .01.

Results

Tables 2 and 3 provided descriptive information about the most and least commonly endorsed beliefs by family members on the perceived relationships between SMI, recovery, and employment. It is evident from the top five most commonly endorsed beliefs that family members, to some degree, recognize the critical role that employment may play in the recovery process. Family members pointed to the importance of providing their loved ones with a valued social role via employment, as well as ensuring that the person’s employment preferences are honored. Also, family members do not tend to believe that their loved ones with SMI will experience a symptom exacerbation and/or relapse should they become employed, nor do they endorse the notion that other recovery goals should be achieved prior to pursuing employment.

Table 2.

Five most commonly endorsed beliefs regarding the relationship between SMI, recovery, and employment.

Survey statement	M	Respondents endorsing ‘fully agree’ (%)
A person’s preference for the kind of work he or she would like to do should be respected as much as possible.	4.41	48
Having a goal of obtaining employment is often important to recovery.	4.34	47
Persons with SMI should receive personalized benefits counseling to encourage them to seek financial independence.	4.19	29
A major reason why more people with SMI do not work is because they face employment discrimination.	4.13	31
Families should encourage their loved ones with SMI to get a job because it will offer him or her a valued social role or a positive sense of identity.	4.09	31

SMI: serious mental illness.

Table 3.

Five least commonly endorsed beliefs regarding the relationship between SMI, recovery, and employment.

Survey statement	M	Respondents endorsing ‘fully agree’ (%)
Families should discourage their loved ones with SMI from seeking employment because working is stressful and might make him or her sicker or precipitate a relapse.	1.97	2
Most people with SMI should focus on taking care of themselves and shouldn’t be expected to work.	2.14	1
Most people with SMI do not want to work.	2.17	5
Families should discourage their loved ones with SMI from working until he or she is well enough to do so independently.	2.45	2
Employment is not that important a goal for a person with SMI and should not be pursued until the person has achieved other recovery goals (e.g. clinical stability) first.	2.67	8

SMI: serious mental illness.

Table 4 presents the five highest and five lowest ranked statements with respect to family members’ perspectives on the important factors in the recovery of individuals with SMI. Having good quality medical care is considered by family members as most important in the recovery of individuals with SMI. Being stably housed was viewed as the second most important factor. The third and fourth most important factors to recovery were complimentary – having a sense of hope, and having a sense of purpose and meaning in life. With respect to family members’ perspectives on less important components of recovery, eliminating all psychiatric symptoms was viewed as the single least important factor. Despite their expressed views in Table 2 about the relationship of employment with SMI and recovery, however, being financially independent and being employed in a competitive job were also ranked among the least important factors for the recovery of persons with SMI.

Table 4.

Family perspectives on the five most and five least important factors in the recovery of individuals with SMI.

Most important components	M	Respondents endorsing ‘very important’ (%)	Least important components	M	Respondents endorsing ‘very important’ (%)
Having good quality medical care	4.89	84	Eliminating all psychiatric symptoms	3.05	9
Being stably housed	4.85	85	Being employed in a competitive job	3.59	2
Having a sense of hope	4.84	86	Being financially independent	3.64	21
Having a sense of purpose and meaning in life	4.83	86	Being connected to something larger than oneself	4.29	50
Learning how to live with psychiatric symptoms	4.74	74	Participating in social and recreational activities	4.31	47

SMI: serious mental illness.

Note: Paired comparison between most important and least important statements to determine significance of difference was performed using Wilcoxon signed-rank test and all comparisons presented as p < .01.

Table 5 presents the five highest and five lowest ranked statements with respect to family members’ perspectives on the challenges and barriers to enabling persons with SMI to obtain and maintain employment. With respect to family perspectives on factors impeding or enabling individuals with SMI to work, stable housing was identified as the most challenging factor in obtaining and maintaining employment. Other logistical factors thought to be significant challenges included the need for transportation and concerns about losing disability benefits. Family members also considered low self-esteem or self-confidence as one of the most significant challenges for persons with SMI to obtain and maintain employment. Importantly, suggestions by family or friends that working may adversely impact mental health, and having been advised not to work by professionals in the past due to fear of relapse, were rated among the least challenging factors for employment. Cultural and contextual factors (e.g. immigration status, difficulties speaking/understanding English) were also ranked among the least significant challenges.

Table 5.

Family perspectives on the five most and five least challenging factors in enabling individuals with SMI to obtain and maintain employment.

Most challenging factors	M	Respondents endorsing ‘very much of a challenge’ (%)	Least challenging factors	M	Respondents endorsing ‘very much of a challenge’ (%)
Stable housing	4.51	50	Owe back child support	3.02	7
Low self-esteem or self-confidence	4.49	52	Family or friends have suggested working may not be good for mental health	3.29	13
Need for transportation	4.44	49	Immigration status	3.51	20
Concerns about losing disability benefits	4.41	48	Advised not to work in the past by professionals for fear it would be too stressful or precipitate relapse	3.54	13
Side effects of medications	4.39	47	Difficulties in speaking or understanding English	3.55	21

SMI: serious mental illness.

Discussion

This article sought to advance the existing literature on the perspectives of family members regarding the role of supported employment in recovery for their loved ones with SMI. Our results confirmed that family members identify employment as having an integral role in recovery, particularly as related to providing a valued social role for individuals with SMI and consistent with the importance they place on the person having a sense of meaning and purpose in life. Extant research has suggested that family members might dissuade their loved ones from seeking employment due to fear about the potential negative effects of increased stress (Bond et al., 2001). In contrast, our findings found that, relative to the perceived benefits, family members were less concerned about the possibility of a symptom exacerbation and/or relapse. This offers preliminary support for important advancements in family members’ attitudes toward and understanding of the facilitative role of employment in recovery. It is important to acknowledge that the families participating in this study were affiliated with their state NAMI chapter and, thus, may have received more psychoeducation about the supported employment model and recovery. Nonetheless, the fact that these families did not endorse the more traditional belief that symptoms should be ‘managed’ prior to securing employment is encouraging.

Despite these promising results, and in contrast to authors’ expectations, being employed in a competitive job was ranked by families as among the least important factors for recovery more broadly. That is, when compared with other aspects of recovery – for example receiving adequate medical care, being stably housed, having a sense of hope, purpose, and meaning in life – achieving financial independence and being gainfully employed were considered less important. Whereas the vast majority of respondents (84%–86%) ranked these aforementioned aspects of recovery as ‘very important’, only 20% of the sample ranked financial independence and competitive employment as such. There are a few possible explanations for this apparent contradiction in the data. First, the majority of respondents in our sample have at least a 2-year college degree. To the extent that education serves as a proxy for socioeconomic status, this may indicate that the families represented in our sample are from higher income backgrounds. It is plausible that families with greater financial means are in a better position to offer their loved ones with SMI financial support and, thus, consider employment and financial independence as less essential. Second, families’ beliefs about the most important aspects of recovery, relative to gainful employment and/or financial independence, might also depend on the ages of their loved ones with SMI. Unfortunately, these data were not collected as part of this survey. Finally, this paradoxical finding in the data mirrors that which was reported in the provider survey article (Costa et al., 2017). That is, both providers and families seem to have difficulty truly appreciating that employment and access to material resources are just as important to individuals with SMI as they are to providers/family members themselves. Costa and colleagues (2017) posited that these attitudes might reflect subtle forms of stigma and discrimination toward individuals with SMI.

Importantly, these findings also suggest that family members’ perspectives may differ in important ways from the lived experience and perspectives of persons with SMI. Qualitative research has highlighted that employment remains an important goal for individuals with SMI even during difficult and stressful times, including those marked by unstable housing (Dunn et al., 2008). Indeed, research has found that individuals have continued working, up to full-time, even while ‘literally homeless’ (Dunn et al., 2008). In addition, whereas family members ranked having a sense of hope, purpose, and meaning in life as more important than gainful employment, consumer-focused research has suggested that work itself promotes these values (Dunn et al., 2008; Salyers, Becker, Drake, Torrey, & Wyzik, 2004). In their 10-year follow-up of individuals engaged in SE programs, Salyers and colleagues (2004) found that consumers identified improved self-worth and hopefulness as among the positive effects that working had on their lives. These discrepant perspectives suggest a continued need for psychoeducation that furthers families’ understanding of just how critical employment may be to their loved one’s overall recovery.

Finally, this article addresses an important gap in the literature by providing information on perceived barriers to supported employment from the viewpoint of family members. To our knowledge, this is the first study to shed light on barriers to supported employment from the perspective of individuals’ natural supports. Among the most significant challenges identified by families were unstable housing, need for transportation, fear of losing disability benefits, medication side effects, and low self-esteem/confidence. Our results indicated that approximately half the sample (47%–52%) endorsed each of these barriers as ‘very much of a challenge’ with respect to obtaining and maintaining employment. Logistical barriers have been consistently cited in the broader literature on experiences of recovery for individuals with SMI (Bradshaw, Armour, & Roseborough, 2007). Taken together, these findings indicate that better access to transportation and continued education about the ‘financial binds’ and fear of losing one’s safety net that result from working while receiving benefits may address important barriers to employment. Furthermore, from an intervention perspective, our results suggest that it is integral to address logistical barriers – such as those related to housing instability and/or transportation – alongside psychological ones (e.g. low self-esteem/confidence) (Becker, Xie, McHugo, Halliday, & Martinez, 2006). Of note, prior research has offered support for the facilitative roles of community involvement and ‘mutual-help groups’ for individuals with SMI in boosting empowerment and self-esteem, as well as reducing stigma (Ilic et al., 2012). Thus, perhaps one means by which to help individuals increase their self-esteem and confidence in the context of looking for a job is to offer informal support groups for those in recovery pursuing similar goals – such groups might be organized via IPS services and/or local NAMI chapters. Lastly, our findings indicate that family members perceive medication side effects, including drowsiness and/or tremor, as impeding employment. Future work would do well to explore in greater depth how and in what context medication side effects might serve as a barrier to employment. Nonetheless, these results suggest that it might be useful to discuss the potential impact of medication side effects on employment with consumers and their families. Facilitating this type of open dialogue could enhance the personalized nature of SE services. For example, if a vocational specialist were aware that his or her client experienced considerable drowsiness in the morning, they could focus their job search on positions with flexible hours and/or identify with family members how to support their loved one in getting to work.

Limitations

Those who completed the survey – the majority of whom were White (95%), female (83%), and had some college education (52%) – are likely not representative of a more diverse population of family members of persons with SMI. Importantly, families representing diverse racial and ethnic backgrounds might endorse different beliefs about the role of employment in recovery. For example, families of individuals with SMI representing diverse backgrounds, both with respect to race/ethnicity as well as socioeconomic status, may have identified contextually sensitive barriers (e.g. immigration status, difficulties speaking/understanding English, difficulties reading) as more salient than those represented herein. In addition, all of the family members in our sample were affiliated with their local NAMI chapter and may not be representative of family members in general. Given that supported employment is a well-established practice in the state of Connecticut, this particular chapter of NAMI may also differ in notable ways from NAMI chapters in general. As such, our findings are not generalizable and warrant further examination. Lastly, it is also important to note the limitations inherent to any self-report measure – namely, that there may be discrepancies between what family members report and how they act. Generally, individuals tend to respond in ways that they perceive as favorable or preferred in the eyes of the researchers. While the Family Survey yielded important quantifiable data, a qualitative approach may have provided additional information about why family members responded in the ways that they did and/or how certain barriers posed challenges to securing employment. Furthermore, future qualitative work might focus on exploring with family members in greater depth what their role might be in supporting their loved one’s employment goals.

Conclusion

This article addresses an important gap in the literature by exploring the perspectives of family members on the role of employment in recovery and the perceived barriers to employment for their loved ones with SMI. While family members can appreciate the importance of SE in recovery and recognize that their loved ones want to work, they still tend to rank other factors as more integral to recovery. This underscores the need for additional education about the potential for employment to facilitate these other factors in recovery deemed more important – including fostering a sense of hope, purpose and meaning in their loved ones’ lives.

Future research would do well to expand data collection using the Family Survey to include families that are not connected with NAMI and, thus, may not have the same access to psychoeducation about SMI, recovery, and the facilitative role of supported employment. In addition, including families from diverse backgrounds as related to race/ethnicity and socioeconomic status will be integral to better understanding culturally and contextually informed barriers and facilitators to SE. Deepening our understanding of the unique barriers and facilitators to vulnerable consumers and families will allow us to tailor recovery-oriented support accordingly. Given that logistical and financial barriers were identified by families as impeding employment, future research should also consider offering subsidized transportation programs in tandem with SE. While traditional IPS can include transportation to/from job interviews by vocational specialists, our results suggest that transportation challenges remain a concern past the interview phase. Researchers might consider comparing outcomes for traditional IPS versus ‘enhanced’ IPS that more directly targets these barriers on a longitudinal basis.

Supplemental Material

Supplementary_Table_per_Reviewer_Comments_9-5-19 – Supplemental material for Understanding family perspectives on supported employment

Supplemental material, Supplementary_Table_per_Reviewer_Comments_9-5-19 for Understanding family perspectives on supported employment by Kristen Keefe, Thomas Styron, Maria O’Connell, Kate Mattias, Larry Davidson and Mark Costa in International Journal of Social Psychiatry

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Connecticut Department of Mental Health and Addiction Services, the US Substance Abuse and Mental Health Services Administration, and the National Alliance on Mental Illness, Connecticut Chapter (NAMI-CT).

ORCID iDs

Kristen Keefe

Mark Costa

Supplemental material

Supplemental material for this article is available online.

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