Wildflower Alliance and Peer Respite Programs
Featured Belonging Organization and A Book Club Announcement
Dear City Person,
While I was researching about loneliness and social support, I ran into a few related community interventions. One of such interventions was peer support which I wrote about in a past post linked below while I was featuring the work of Intentional Peer Support. I would recommend reading that post first before circling back here as it offers important historical context.
I later learned about peer respite programs via the Wildflower Alliance’s Afiya Peer Respite Program which I thought to feature here in my post today. I will first provide context on inpatient psychiatric units that lead to the rise of community-based interventions such as peer respite programs. Then I will define what is peer respite and share where you can learn more about them. Then I will share about what the Wildflower Alliance offers and how similar programs can fill the service gaps in psychiatric wards. I will end with a question for readers.
*Content warning: this post will include mentions of trauma.*
Before I dive in, I have an announcement to share…
The Othering and Belonging Institute (OBI) at Berkley University is starting a free monthly virtual book club to discuss “Belonging Without Othering: How We Save Ourselves and the World” written by john a. powell and Stephen Menendian.
The first meeting to discuss chapter 1 will take place on July 17, 2024. Click here to learn how you can sign up, to access the first chapter for free, and to see where you can buy the book.
I would also recommend checking out World Cat by clicking here to see if there is a nearby public library that carries a copy of the book you can borrow for free wherever you are in the world. I could not find any in UAE that did except for NYUAD’s library which is only accessible to students and faculty. But I was able to buy a digital copy via Better World Books which you can click here to access.
Click “read more” below to see one of my past posts where I wrote more about OBI and its offerings:
I have signed up for the book club and look forward to starting, lemme know in a private email reply or publicly in the comments below if you will be joining!
Some house keeping before I continue…
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Peer respite programs arose in the US as a response to the traumatic experiences of some of those who were hospitalized at inpatient psychiatric units. Before I get into more on what they are, I will first offer some context on psychiatric units.
The Status of Psychiatric Units Globally:
Psychiatric units were designed to be spaces to serve people whose needs cannot be adequately met at an outpatient clinic. One may be voluntarily or involuntarily hospitalized for a temporary period. Involuntary hospitalization can happen for those whose physical life or the life of others is at imminent risk due to mental distress. These units are staffed by psychiatrists, nurses, and psychotherapists who offer 24/7 individual, group, and family care in the duration of the person’s stay with opportunities for patients to socialize.
Many psychiatric wards globally have unfortunately been understaffed, under funded, under-resourced, poorly managed, or/and have limited access to therapeutic and social services outside of medication which can lead to poor treatment and even traumatic experiences. Many don’t offer comprehensive planning for what happens after the patient is discharged from the hospital which can increase the risk of patients getting re-hospitalized again in the future. At worst, there can be extreme forms of human rights violations which is a belonging issue.
In the West, these issues have lead to the rise of peer respite programs and other community-level interventions as preventative or alternative approaches before the person needs to go to the hospital. However, these programs were not widespread enough or well funded enough for everyone to access. This is why the reduction in psychiatric hospitals in the 50s and 60s in the US has lead to a public health crisis as they happened before any sustainable or meaningful community-based interventions could work. Click here to read an NPR article that says more about this.
Also click here for an article by the World Health Organization (WHO) that raises concerns about widespread human rights violations in psychiatric inpatient units and how community-based interventions have been shown to be cost-reducing and effective. They further propose that community supports and community crisis management should not only focus on mental healthcare but also wider economic and social supports.
While peer respite programs have been used by people who are also using psychiatric and psychological services on the side, others have used them on their own due to traumatic experiences with the mental health system.
I personally don’t propose a complete replacement of inpatient units as I recognize that we have yet to come to a point in history where alternative community-based options as proposed by the WHO or by peer respite models are more widespread. I also recognize that no one approach will help for everyone all the time especially in life or death situations. Rather, I propose that inpatient units to be majorly improved until more effective community-based crisis and social support programs be implemented and sustained at a large scale to give people access to multiple options that could reduce the need for inpatient units in the long-term.
Inpatient psychiatric units may be the only life-saving option available in a given community and not everyone has a traumatic experience in one. In fact, a 2023 review of 31 studies from almost every continent in the globe found high levels of patient satisfaction at inpatient units. Click here to read the full study.
However, the study did also find that the major sources of patients’ lack of satisfaction were due to:
experiencing involuntary hospitalization
seclusion
restraint
physical or psychological abuse at the inpatient unit
the misbehavior of staff
poor living conditions
lack of information and transparency
Those who were satisfied were more likely to report better insight, therapy relationships, and overall functioning. This shows that addressing patient satisfaction is important for improved outcomes and that coercive treatment can be counterproductive.
At the same time, I wonder about the power dynamics involved in filling in a satisfaction survey: if one is not happy with coercive stay, they may want to do anything and say anything that could get them out as early as possible including claiming that they are satisfied when they are not.
Aside from this study, there are multiple peer reviewed studies that reflect how the numbers of people who report poor and even fatal outcomes post-discharge are significant enough to be a global public health and human rights concern. The studies show that this is not unique to the US and that makes the role of peer respite programs worth looking into as a preventative method, even if not as a complete alternative for everyone all the time.
Here are 3 global studies below that look into the experiences of patients at inpatient psychiatric wards and what can be done about it:
Study 1:
A large Danish study in 2019, linked here, compared the long-term outcomes of 62,922 recently discharged patients with 1,573,050 patients who were never admitted. The outcomes they looked at are: mortality, accidental death, criminal violence, suicide, self harm, and hospitalization because of violence. They measured these outcomes at different timeframes: within 3 months of discharge, 3-6 months of discharge, 1-5 years of discharge, and 10 years of discharge. While most patients in the study had voluntarily admitted themselves to inpatient psychiatric units, the percentage of those who experienced poor outcomes was significant.
Overall, the study found that people who were discharged from inpatient psychiatric units were at higher risk than the general public to experience poor outcomes in all the areas the researchers studied. Suicide and self harm were found to be highest within the first 3 months post-discharge while the risks for other outcomes remained the same at a 10-year period. The risk for at least one of the outcomes worsening within a 10-year period was the highest at 49.4% for those diagnosed with psychoactive drug addiction and lowest for those who were diagnosed with a mood disorder but still a significant enough number (24.4%—almost a quarter!). The researchers suggest immediate follow-up care post-discharge and long-term access to social support to address this.
Study 2:
A 2022 qualitative study gathered the responses of 262 Reddit users on their experiences of hospitalization at inpatient psychiatric units (r/PsychWardChronicles). Click here to find the full study.
Three main themes were found from the responses:
“neglect and abuse”
“coercion and obedience”
“dehumanization and fear”
The authors highlight how often respondents gave into coercive acts in the hopes of getting discharged faster.
The authors also raise concerns about how the traumatic experiences discouraged respondents from seeking future mental health services even when they are needing it. This shows that preventing these traumatic experiences in a space that is supposed to be healing is an important public health priority. It further shows the need for patients to have accessible social support shortly after being discharged.
Study 3:
A 2019 review of 72 studies from 16 countries published between the years 2000 and 2016 linked here looked at the factors that can help improve the outcomes of patients at inpatient units.
Their introduction cites multiple UK-based studies that revealed prevalent “fears about assault, concerns regarding coercion, limited recovery-focused support, and lack of therapeutic activities” as well as poor building conditions located far from patients’ families and homes and “…unsafe staffing levels and overly restrictive care.”
The review found how the 72 global studies reveal the importance of working to reduce the negative impacts of coercive treatment, ensure safe social and physical environments at the wards, foster quality relationships, and patient-centered care.
What is Peer Respite:
According to a research and practice agenda by Laysha Ostrow and Bevin Croft, linked here, peer respite programs are:
“…voluntary, short-term, residential programs designed to support individuals experiencing or at-risk of a psychiatric crisis. They posit that for many mental health services users, traditional psychiatric emergency room and inpatient hospital services are undesirable and avoidable when less coercive or intrusive community-based supports are available. Intended to provide a safe and home-like environment, peer respites are usually situated in residential neighborhoods.”
The programs are run by trained volunteer peers who have had past experiences with mental and emotional distress. The idea is about connecting people with lived experience with each other. Some offer other social services beyond a temporary residential stay as I will mention later regarding the Wildflower Alliance as an example.
Some peer respites offer a “mobile” respite where instead of the person going to the residence, trained peer staff or volunteers come to the person.
There have been other forms of respites that don’t necessarily fully fit the definition of a “peer respite” in that they are run by psychologists, social workers, or psychiatrists but staffed by trained peers or incorporate a mix of both psychological and psychiatric support as well as peer support and access to housing, education, employment, and financial assistance.
To learn more about peer respite, click here to access a free digital copy of a handbook written by both Intentional Peer Support and the Wildflower Alliance which also incorporates perspectives from other peer respites: . You can also purchase a copy to support their work by clicking here .
The Wildflower Alliance
The Wildflower Alliance is based in Western Massachusetts, USA and consists of multiple online and in-person resources that include a peer respite called Afiya among others. It is funded by Massachusetts Department of Mental Health, federal grants, regionally based hospitals, jails, housing projects, community organizations, art councils, and individual donations. These help make their services free of charge for the community.
Aside from a home-like temporary respite of 7 nights, the Wildflower Alliance also offers:
support for those who were recently discharged from an inpatient psychiatric unit to ease their transition back to the community. This can look like: thinking through next steps together, socializing together, support with needed paperwork, advocacy, support with appointments, and connecting with other community resources like housing support, career support, where to access financial support, support groups, cultural spaces, etc.
help with finding and maintaining housing and work
distributing essentials such as food, phones, sanitary items, etc.
A Discord server for people to socialize and support one another online
A drop-in social room where people can socialize, join support groups, create art, meditate, etc.
Their approach focuses more on building mutually supportive relationships where all sides learn from each other rather than a “helping” versus “helped” relationship. The assumption is that what we often label as a “crisis” to be “fixed” which can often reinforce stigma, is more seen as a clue to how someone is attempting to cope and a valuable opportunity for someone to learn something about themselves and what they are valuing in life and how they show up in relationships, and what do they want to change versus not change.
Their Afiya Respite Program is among the very few dozen in the whole US. It is designed as a homey space where people can temporarily stay in a private space with access to a common area to rest with no strict schedules imposed, access to individual and group peer support, support in brainstorming next steps and access to essential needs and community resources as described above, access to books and art materials, and limited transportation.
They further help connect people with psychiatrists and psychologists outside the respite if this is requested and allow for visitors whether they be family members or mental health providers (in Massachusetts, home-based services are offered alongside outpatient and inpatient treatment).
Even when someone is not staying at Afiya or they stay ended, they can still have access to other services listed above by The Wildflower Alliance. While some hospitals offer similar services in the form of social work, from my experience of working in the US before I moved back to the UAE is that they tend to be severely understaffed and have very limited time in their appointments. I also noticed how certain demographics such as low income immigrants strongly mistrusted them so more creative solutions need to be found to get their needs met. Some people respond better to a peer than to a hierarchal relationship. Having additional community services like Afiya can help bridge gaps in current services even if they cannot always 100% replace them.
Click here to learn more about the Wildflower Alliance and click here to learn more about their peer respite program.
A question for readers as I wrap up…
Have you heard of other creative approaches to addressing gaps in mental healthcare and belonging in your country?
Another I can think of is the Friendship Bench created by a Zimbabwean psychologist to address strongly-held cultural stigmas against seeking mental health services which you can read more about by clicking here.
For the next biweekly newsletter, I will be reflecting on what it has been like for me to shift from a weekly to a biweekly posting schedule before I take a one-month break to assess whether to keep this frequency or shift over to monthly one.
Before I fully wrap up…
I am ending each of my posts with a randomly drawn conversational card that you can consider using to deepen your conversations with people this week. So here’s today’s card drawn from a deck called Scenario Cards:
“What if today was your last opportunity to speak to uplift the world? What would be your message?”
Let me know if you end up using this question in any of your conversations and how it goes!
Click the link here to learn more about Scenario Cards. I currently earn an affiliate fee for every purchase from this link. This is so far the first affiliate partnership I have and I only plan to do so with products I genuinely benefited from. I had previously written a post about conversational cards in general prior to being invited to Scenario Cards’ affiliate program. Click here for the link to the post.