A Participatory Evaluation of an Urban Garden Project in Ecuador: Exploring Factors That Impact the Recovery of People With Severe Mental Health Problems

Phase 1: Cognitive Mapping on the Concept of Recovery

Four cognitive mapping sessions of 2 h each were held to define ‘recovery’ from the perspectives of partners with an SMHP and identify the main factors that influence their recovery process. Workshops were guided by two questions: (a) What comes to your mind when you think of recovery from a mental health problem? and (b) What factors do you think are associated with this recovery and your well-being? The sessions were conducted either face to face or online via Zoom. Sessions were audio-recorded and transcribed verbatim for analysis. Through these cognitive mapping sessions, recovery was defined as ‘the non-static and non-linear process, with ups and downs, in which one copes with the illness and walks towards well-being’. This definition was used to guide the subsequent phases of this study.

Phase 2.1: Photovoice Project

The Photovoice methodology was used to understand the elements that the partners consider important for their personal recovery process (Wang & Burris, 1997). They were asked to create photography projects around two themes: (a) ‘my recovery’ and (b) ‘the impact of Huertomanías on my recovery’. Five sessions of 2 hours each were held by a professional photographer and the research team to introduce photography techniques and photovoice methodology and its ethical considerations. Several meetings were established to comment on the progress of each photography project. The final stage of the project consisted of individual meetings with the partners, in which each of them selected around 10 photographs and created a short narrative (100–150 words) that best represented its reality and the selected theme. A final group session was convened in which each participant presented their final project. Finally, individual interviews with each partner were conducted to delve deeper into the participants’ photovoice projects. These interviews were audio-recorded for later transcription. A total of 6 hours of transcription were used for later thematic analysis (see Appendix 1 for full interview guide in supplementary material).

Phase 2.2: Individual Interviews

Twelve individual interviews were held with family members and their mental healthcare professionals. The interviews lasted between 40 minutes and 1 hour and were carried out via Zoom. The interview guide (see Appendix 2 in supplementary material) was based on the Most Significant Change (MSC) methodology (Davies & Dart, 2005; Serrat, 2017) and inquired into the participants’ perspectives on the health and well-being of Huertomanías’ partners prior to their participation within the programme and its impact on their recovery process.

Phase 3: Written Feedback and Feedback Sessions

Due to the participatory nature of this study, two feedback sessions of 2 hours each were held with the participants during analysis and interpretation of data at each stage (see Figure 1). When more convenient for participants, feedback was received in written format. Community involvement in the analysis and interpretation phases of participatory studies occurs less frequently than in other research phases (Cashman et al., 2008). However, this was considered essential to this study – the joint interpretation of data in which different perspectives are articulated and integrated enriches study results. Importantly, this process ensures that the study’s findings are faithful to the experiences and stories of the participants.

Autonomy

Interpersonal Relations and Participation

This theme emerged from participants’ accounts of Huertomanías influencing partners’ interpersonal relationships and the relationship that they maintain with their environment. According to participants, Huertomanías was able to generate a deep sense of belonging:

[Huertomanías has helped the partner] in feeling accepted, in feeling that there is a place where they could go, where they would be understood to a certain extent [...] that helped them feel a sense of belonging. I mean, they would say “I’m a part of Huertomanías.” That helped. (F5.1)

Additionally, participants described that Huertomanías promotes their active participation within society. As a family member explained:

Being able to go to different places, when they participated in the sale fairs every Sunday. They went to museums, to all the activities that were scheduled, like participating in mental health forums. They have given an interview on the radio, and all these things [...]. (F4.1)

Some family members shared how their relatives had previously isolated and how they had lost their connections with the world due to stigma and discrimination regarding their mental health; however, they also described how Huertomanías benefits their relatives in providing access to spaces where they can navigate on social worlds:

... [Huertomanías’ director] has not isolated them from the world, she has welcomed them to the world; and in this world where they live, in the one we live in, she has introduced them to a lot of people. (F3)

Participants reported Huertomanías has been an accepting, inclusive, and flexible work space, which allows them to develop social bonds, to connect and experience fraternity. As mentioned by one partner:

Huertomanías is being a part of a project which seeks to embrace differences, which seeks to build a community, which seeks to be democratic by giving everyone an equal value, and where there’s a lot of good humour and friendships. (S1)

In addition, the garden space emerged as an important component to help form a deeper connection with the environment. In fact, to be able to be in contact with nature was described as “therapeutic even though it’s not therapy” (F3):

We work in a garden where there are flowers, plants and animals. This helps me to identify myself with what I’m doing, with the contact with nature and ecology. (S3)

In relation to the above, a family member also mentioned:

Huertomanías is a space where you can remember, that plants continue to grow, that the products continue to come out. And there’s this important symbolism of the soil: the cycle of life, the cycle of death, the cycle of production, of harvest, the sowing, the sun, the moon, all that. So, I believe that this is good for [their partner] and to embrace her condition. (F1)

Mental Health

Beyond the accounts of Huertomanías supporting its partners by fostering their autonomy and providing a space for relationships to be nurtured, participants directly referred to the impact of Huertomanías on their well-being and mental health management. They described the validation received from coworkers with mental health knowledge, the job’s flexibility, the social support offered by peers, and the sense of humour infused throughout the programme as factors that promoted acceptance of the diagnosis, adherence to treatment, and crisis management, thus contributing to their non-linear recovery process.

A family member shared an experience that portrays their view on how Huertomanías’ members have supported its partners’ mental health by being knowledgeable about mental health problems and through their willingness to be in contact with their mental healthcare professionals.

The bigger context of this quote narrates the experience of a partner wanting to quit their psychiatric treatment because their doses were augmented excessively, to which Huertomanías’ director accompanied them to negotiate on those doses:

S3 had stopped going to his psychiatrist for some time and did not want to go back because their medication doses were augmented excessively, [..] But [Huertomanías director] probably suggested that they go back to the psychiatrist and continue with the treatment and see how it goes. I have seen her take care of those things, and not only with S3, because she knows all the psychiatrists who treat them. [Huertomanías director] accompanied S3 to go to the doctor again, obviously, we both were there with them. (F3)

In line with the above, F3 also shared that within Huertomanías, the team not only demonstrates a commitment to supporting partners during the process of engaging and negotiation with their psychiatrists but also establishes Huertomanías as a designated space where partners are given the opportunity to openly question and address their doubts around medication, encompassing aspects such usage, dosage, and side effects:

But he [Huertomanías’ Partner] told her [Huertomanías’ Director], “I want you to tell me what these pills are for and what side effects they have.” So, she resolves their doubts, she resolves their anxieties, even if it’s about their treatment, because that gives them security and then they [Huertomanías’ Partners] continue with the project, they continue working. (F3)

Moreover, an interviewee also suggested that having a structured job, and specifically one that has to do with nature, helped a partner face a depressive episode:

When they have had very strong episodes of depression and they don’t want to get out of bed, Tuesday arrives, which is when they go to remove the soil and do more field work, [...] they decide to get up early to go and fight depression. In other words, in those small things, for me that is really significant; that even though they are ill, they have a place to go, where they want to go and that for me is more than enough. (F1)

A family member also reflected on how all members of Huertomanías have contributed to the mental health crisis management of its partners:

One day one of the partners had a crisis in the garden, and no one, none of them wanted to leave this boy all alone, no, no, no, no and no. [...] they were there to support the boy [...] So you can see that they respect each other and help each other, they support each other. (F3)

Family Dynamics

Huertomanías was also described as prompting a process of change in family dynamics, facilitating care, understanding of mental health problems, and emotional support (for both, the partners and the families). One family member explained that meeting other people going through similar experiences contributed significantly to understanding things from a different perspective:

That was a contribution [of Huertomanías]. Meeting other people who were suffering from the same illness. Seeing other mothers who are also in situations of having children with schizophrenia does give you another perspective. That is a contribution. I mean, there should exist more support networks and in the garden I found four families, which, within the community is minimal; but at least we are four families who know that we are in a similar situation. And, it helps. [...]. (F5.1)

Family members mentioned acquiring new caring roles, which requires them to de-stigmatise and learn about mental health, incorporating ways in which they can be more supportive. These changes, which are on-going, have been promoted by the opportunities of participating in gathering spaces with other family members, as described above, and by having access to new understandings of mental health that focus on autonomy and community care, as F4.1 and F3 mentioned:

We realise that with this type of project the family can assimilate better, erasing the stigmas that there are with this type of illness. (F4.1)

Family Support

Participants suggested that family has been an important contributor to the recovery process of Huertomanías’ partners given the care and support, both financial and emotional, that they have provided. For example, F4.1 and F4.2 recalled how they have supported financially their family member [partner], since before he moved in with them, back in 2015.

Yes, we have always taken care of [the partner] financially … We even helped them from afar [when the partner lived in another country]. And now, we help them here.

A partner also described how their family has been essential to their recovery:

My stepfather, my mother and my father, yes, those are three fundamental pillars, but above all my stepfather and my mother who have been much more involved in my process. (S5)

Despite that the family was consistently reported as a fundamental support system, a level of complexity was identified in this theme; some family members have stories that portray the ways in which they have caused pain, due to the lack of knowledge on mental health or as a consequence of stigma:

The family always tends to overprotect and even I started being overprotective until I realised that it wasn’t good for them [...] Huertomanías, gave us the light of that: To be able to let go, to loosen up a bit, because overprotection is bad, very bad. (F4)

An interviewee also expressed how sometimes the family is not able to fulfil all of the partners’ needs:

[...] The family system is not able to have all the resources, the solidity, the energy and the conditions to be able to give S5 the containment and the collective support [...] that they need. (PS5)

The aforementioned quote demonstrates the burden that is put on caregivers due to the lack of comprehensive policies and appropriate healthcare services that address the needs of people living with SMHPs.

Public Policy and Healthcare Services

According to participants, public policy and the access or lack of access to integral healthcare services has directly affected the recovery process of partners. The absence of public policies related to community mental health was discussed, as well as the deficiencies in mental health services. A healthcare worker explained how multiple services and systems are necessary to address the different needs of people living with SMHPs:

What would be ideal, obviously, is to have a network. A network where, on one hand, there is a health care system, and on the other, there are work options, for example, spaces such as Huertomanías [...]. So, the idea is that, ideally, there would exist such networks. Yet somehow, it doesn’t exist in the country. We have a health care system that isn’t working as a network and that doesn’t have the capacity to provide all these elements. [...]. (PS1)

The interviewees also suggested that the State should be taking a more active and responsible role to improve the recovery process and quality of life of people living with SMHPs. Improvements suggested included having access to an integral medical treatment or having available medication all year long. Some family members reported that people living with SMHPs seem to be forgotten by the State, since there is a lack of initiative to help them or organisations that work with them. F3 suggested that:

[...] the State, as such, should take responsibility. In the same way as with the disabled, that are missing a foot, that are deaf, this and that, the same with mental health. Because sometimes it’s not very noticeable [referring to the disability], and people think that they can do it; but the mind is everything. They need help. They need help so they can work according to their abilities. To include them in any way. Even medical care, any sort of help. The State needs to own that responsibility. Or help the institutions, because private institutions do a lot of things, so the State can help them [...]. (F4)

On the other hand, while some members mentioned that the health system was deficient and precarious, one participant stated that the Ecuadorian health system made it easier for their family to cope with the recovery process.

[...] The social system is very important, the facilities that there can be in a country, the attention that there can be from a government. For example, for the disabled, it's important. And for all of us. We were in a bad situation there [country of origin] and here [Ecuador] it changed everything in our life. We started from scratch here. (F4.1)