A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
People with serious mental illnesses (SMI) have conditions like schizophrenia, depression, or bipolar disorder. Many adults with SMI are parents. Parenting can be a valuable, rewarding part of family life for people with SMI. However, parents with SMI may face a variety of challenges. Studies have shown that parents with SMI may face stigma and discrimination, and they are much more likely than parents without SMI to have child welfare systems get involved with their families or to lose custody of their children. In addition, parents with SMI may have challenges balancing the everyday demands of parenthood while also managing their SMI.
In previous studies, support from peer specialists has been shown to aid people with SMI in their recovery process. A peer specialist is an individual who has personal experience living with SMI and who has been trained to provide support to others with SMI, but who is not a therapist. Peer specialists may be employed at mental health agencies to serve as positive role models for clients with SMI. In a recent NIDILRR-funded study, researchers asked a diverse group of individuals familiar with peer supports to describe how peer support might specifically benefit parents with SMI. They wanted to find out more about the challenges and needs of parents with SMI, how peer specialists might be especially well-suited to meet those needs, and what unique challenges peer specialists might encounter when supporting parents with SMI.
Researchers at Parents Empowering Parents: National Research Center for Parents with Disabilities and their Families interviewed 22 informants who were individuals with diverse knowledge regarding the lived experiences of parents with SMI. The informants included therapists and staff at community mental health agencies; agency directors and policymakers; experienced peer specialists; and persons served by community mental health agencies. All of the informants were parents, and most had experience living with SMI and receiving professional and peer support services themselves. The informants were interviewed individually for 1 to 2 hours, and they also participated in a full-day group workshop to identify common experiences among the informants. The informants were asked to describe the unique challenges and needs of parents with SMI; how peer specialists can meet those needs; and how support from peer specialists was unique.
The researchers identified several recurring themes in their interviews with informants. These themes centered on several challenges and unmet needs and the ways that peer specialists may be able to use their lived experience with SMI to help:
- Parents with SMI may feel isolated and may encounter gaps in support and resources available in the community. Peer specialists can leverage their community connections to help parents access resources and advocate for themselves and their families.
- Parents with SMI may not reach out to obtain mental health supports, due to perceived biases in the child welfare system and fear of being referred to Child Protective Services. While not a substitute for traditional mental health services, peer specialists can offer other types of mental health support. For example, they can provide support based on their own experience through a more equal-status relationship with clients. They may also be able to encourage the building of self-determination and autonomy for these parents, so that parents can begin to see that change is possible and that they are capable of making it happen.
- Parents with SMI may be coping with stigma, self-blame, or complex family relationships, and may need advice on decisions around family planning or if and how to disclose their SMI to their children or other family members. Peer specialists may be able to help to reduce stigma through relationships that are nonjudgmental and that foster autonomy and choice for clients. Unlike therapists, they can utilize self-disclosure to share their own lived experiences with SMI and serve as role models for success.
- Parents with SMI may find that ordinary parenting challenges can become magnified by their mental illness. Peer specialists can draw upon their own experiences living with SMI in order to assist parents. They may have time tested strategies to address the every-day problems, like preparing nutritious meals, helping their children with homework, or driving them to appointments, and bigger issues like planning for the future.
In addition, the informants noted that some parents with SMI may prefer to work with a peer provider who also has parenting experience. However, others may find that connecting with a peer provider who understands life with an SMI and who can be reflective about the role of family in recovery is just as valuable, regardless of the peer provider’s parenting experience.
The informants also described some challenges that peer specialists may face when supporting parents with SMI. Due to the emotional nature of family relationships, peer specialists may be triggered themselves by witnessing the challenging family experiences of their clients. Peer specialists may also feel especially compelled to help their clients when the welfare of young children is involved, which could challenge the professional boundaries of the peer specialist. For example, a peer specialist may have difficulty turning down a request to drive a parent and child to an appointment on their personal time. Related to this, it may be challenging for peer specialists to support their clients’ freedom of choice if they feel that the client is making choices which could harm their young children.
The authors noted that peer specialists can fill some of the existing service gaps for parents with SMI. However, supporting parents with SMI may be emotionally challenging for peer specialists. The authors recommended additional training and organizational supports for peer specialists serving parents with SMI, such as training on issues related to having a history of traumatic experiences. They also noted that not all peer specialists may wish to work with parents with SMI. Based on the findings of this study, the authors noted that the quality of the match between peer specialist and client may be especially important when the client is a parent. Although peer specialists may not necessarily need to be parents themselves, shared experiences and values around family life may be an important part of the matching process. Future research may also be useful to identify the components of a successful peer support program for parents with SMI.
To Learn More
The National Research Center for Parents with Disabilities and Their Families offers many resources for parents with disabilities and the professionals who work with them, including how-to videos, information about parental rights, and the ParentingWell practice profile. This Center also supports the Disabled Parenting Project, online space for sharing experiences, advice, and conversations among parents with disabilities as well as those considering parenthood.
What is Peer Support and What is NOT Peer Support? From the Rehabilitation Research and Training Center on Pathways to Positive Futures. While this factsheet is geared toward youth with SMI, it offers an excellent explanation of the basics of peer support relationships, including setting boundaries for what is not part of the supportive relationship.
To Learn More About this Study
Nicholson, J., and Valentine, A. (2019) Key informants specify core elements of peer supports for parents with serious mental illness. Frontiers in Psychiatry, 10(106). This article is available free in full text from the publisher and from the NARIC collection under Accession Number J72160