Picturing a mental health journey: experience of a participatory photovoice approach to presenting recovery narratives of people with lived experiences and caregivers in Ethiopia

Abstract

Background

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PhotoVoice is a participatory approach that uses photography to offer a useful platform for sharing the stories of people with mental health conditions whose voices are often marginalized. This study aimed to explore the experiences of people with lived experiences and caregivers in constructing brief recovery narratives presented at training sessions that highlight their experiences before, during, and after mental health treatment.

Method

A participatory photovoice study was carried out with 16 participants from the Sodo district, Ethiopia. The participants were people with lived experiences (n = 8) and caregivers (n = 8) selected via purposive sampling. Field notes, photographs and testimonies arising from the PhotoVoice sessions were analysed together with in-depth interviews with participants. The data were analysed via narratives used during photovoice sessions and thematic analysis.

Results

The PhotoVoice training experience was mostly positively received and brought to light a variety of perceived benefits through providing an inclusive understanding of mental health and related misconceptions and by addressing stigma and discrimination-related myths in the community. Furthermore, the participants reported the benefit of being engaged in productive activities that improved their communication and relationships with other people. The photographs revealed the stigmatized experiences of participants seeking alternative treatment solutions and challenges in accessing and gaining awareness of mental health. Stress and fear of public speaking and negative feedback from their family and community were the main barriers to participation in the photoVoice sessions.

Conclusions

This study shows that PhotoVoice training has important value in eliciting insights from participants’ lived experiences. The findings indicate that this approach is important for the empowerment of people with lived experiences and their family members and for coping with the stigma and discrimination they encounter. Stakeholders working in mental health can use and adapt this participatory technique to empower service users and family members and reduce the impacts of stigma associated with mental illnesses.

Introduction

Stigma related to mental illness, particularly stigma within the healthcare system and among healthcare professionals, has been found to be a major obstacle to treatment and recovery [1, 2]. The influence that stigma has on people seeking treatment, their families, medical professionals, and society at large makes addressing stigma in psychiatry crucial [3].

There is growing recognition in the field of global mental health of the advantages of working with people with lived experiences (PWLEs) of mental health disorders in research [4]. To lessen stigma, the Lancet Commission on Ending Stigma and Discrimination in Mental Health reported that employing strategies that directly or indirectly involve social contact between individuals with and without lived experience can effectively reduce stigma [2, 5]. Engaging individuals who have personally encountered mental health conditions in the cofacilitated training of primary care practitioners can decrease stigma and lead to improvements in mental health services [6,7,8] and can also increase researchers’ understanding of the challenges of stigma and recovery processes [9].

Using photographic storytelling as a participatory tool, PhotoVoice is one way to help people with lived experiences collaborate and support recovery [10]. The notion of PhotoVoice was created by Wang and Burris (1994) as participatory action research, or citizen science, a method that enables people to identify, represent, and enhance their community by producing photographs and writing to address social issues [10].

The goals and approaches of PhotoVoice align with best practices for reducing stigma, and they complement multimodal antistigma treatments [11]. As part of a collaborative approach, PhotoVoice involves PWLES sharing their recovery stories via pictorial narratives to encourage social interaction, dispel myths, and lessen stigma [12].

In the context of an anti-stigma intervention, PhotoVoice has been a potential approach to comprehending the individualized experience of stigma associated with mental health conditions and a means of achieving personal empowerment, increased social capital and positive change [13, 14]. Featuring visual narratives in which people with mental health conditions share their stories has been shown to be a successful strategy to reduce stigma [15, 16]. The narratives discussed during the photovoice sessions have helped the participants reflect on their illness experiences, strengthen their self-efficacy to disclose and share their stories publicly, and share their experiences with one another, their family members, healthcare workers, and members of the research team.

This study adopted a clear working guide, specifically the RESHAPE training manual (which reduces stigma among healthcare providers) [12,13,14, 17]. This PhotoVoice training was developed in partnership with PWLES to reduce the stigma associated with mental health among healthcare professionals, with the training themes, materials, and techniques developed through in-depth consultations with PWLESs. The goal of this study was to demonstrate the recruitment experience and to understand the perceived benefits, perceived harm/disadvantage(s), and recommendations provided by the participants. A further aim was to present the experience of constructing and relating testimonies using PhotoVoice from the perspective of people with lived experience to learn how they experienced the process unfolds context specifically.

Method

Study setting

This study is a component of the International Study of Discrimination and Stigma Outcomes (INDIGO) collaboration, an ongoing worldwide network of efforts to reduce stigma that led to the implementation of the INDIGO Partnership research program in five nations [17, 18]. This program aims to develop an in-depth understanding of individuals’ experiences of mental health conditions via collaboration among service users and caregivers, which creates a new environment in which knowledge can be shared. This study was conducted in the East Gurage Zone of Sodo District, Ethiopia. This area has served as a population and study foundation for vital health research, particularly the PRIME study, which aims to integrate mental health services into primary healthcare, involving people with lived mental health challenges in planning, implementation, and evaluation [19].

Participant characteristics

A total of sixteen people participated in the training: 8 PWLEs (2 men, 6 women) and 8 caregivers who provided care and were involved in the training paired with PWLEs (2 men, 6 women). The participants had been diagnosed with the following mental health conditions: depression (n = 2), bipolar disorder (n = 1), psychotic disorders, e.g., schizophrenia (n = 4) and alcohol use disorder (AUD; n = 1). The majority of participants were from the Gurage ethnic groups, followed by the Oromo and Amhara ethnic groups.

Recruitment and consent process

Following approval from the King’s College London Research Ethics Committee (HR-19/20-17252), ethics approval was obtained from the College of Health Sciences, Addis Ababa University IRB (protocol number 072/19/SPH). A letter of cooperation was sent to the Sodo district health administration and to the primary health facilities in which the studies were conducted. The study participants were selected on the basis of the revised RESHAPE manual criteria and the INDIGO Partnership study on adapting and piloting a social contact-based intervention to reduce mental health stigma among primary care providers [17, 18].

The RESHAPE approach to the selection of participants is as follows: people with lived experiences (PWLESs) must be recuperated and exhibit clear signs of recovery that, since starting treatment, healthcare professionals and families have evaluated PWLEs as having improved. The PWLEs should preferably be from the surrounding area and receive care from the primary healthcare facility there. The PWLEs should have received a diagnosis from a psychiatrist or psychiatric nurse. The PWLEs need to have disclosed their condition to at least one family member, friend or relative and be ready or willing to attend the sessions. In addition, the Ethiopian site meets further criteria: PWLEs need to be diagnosed with one of the priority mental illnesses in Ethiopia, which includes depression, bipolar disorder, and schizophrenia [20].

To prevent any pressure from participating in the program, the following actions were taken. After receiving the listed potential candidates, the INDIGO Partnership field coordinators gave the eligible participant a briefing on the training’s goals and scope, its duration, and how confidentiality for any data collected would be maintained. They also gave them the option to withdraw from the program at any time if there were any unfavourable conditions. Written consent was obtained from each participant prior to participation. The participants asked their family members and friends to provide consent to be photographed, with the understanding that the images might be shown to other participants during the PhotoVoice sessions. They then submitted the written consent forms to one of the field coordinators.Before starting the training session, two in–person contacts were made with each participant. The first meeting was intended to establish rapport, assess the participants’ readiness/voluntarism, and obtain verbal consent. It was also checked whether participants had disclosed their condition to family members; if not, they were encouraged to disclose if there was no apparent risk of harm to do so. The second meeting was held after one week and focused on addressing any concerns about their involvement in the PhotoVoice process. Written consent was obtained at this stage.

PhotoVoice training

The PhotoVoice process was based on the RESHAPE intervention, which aims to improve mental health service provision through stigma reduction (12–14,17). The training was carried out over the course of 5 sessions, the first two of which were held on back-to-back days, and the other three occurred one week apart, with the last session occurring two weeks after the previous session. Each session lasted 8 h. The training followed the RESHAPE PhotoVoice manual. The training was led primarily by five professionals, including one physician with a specialty in psychiatry, two PhD holders, and a health education and communication specialist. The SHOWED method (S = What do you see here, H = What is truly Happening, O = How does this relate to Our lives, W = Why does this problem or strength exist, E = How can this lead to Empowerment, D = What can we do about it?) was used to support participants in developing a narrative for their photographs. The participants were given time to complete their assignments of taking pictures and narrative stories, think back on the previous session, and prepare for the next session during the breaks between sessions.

The training covered a wide range of empowering topics, with a primary focus on how to use the cameras, tips for taking pictures, and preparing recovery stories [12]. These tests involved testimonies by service users and caregivers using the photographs that participants had taken. The structure of the testimonies involved covering experience before, during and after starting treatment. There were three stages of this interactive training approach. The first step was choosing which pictures to show the group; each participant made this decision. Second, adding context made the story associated with each picture clear. Third, they shared the narrative with the participants, including their implications for their mental health condition. The training methodology comprised didactic presentations and group discussions, exercises, group presentations, role plays and activities, and reflective question-and-answer sessions.

Data collection

In addition to field notes, photographs and testimonies from the participants, in-depth interviews were held with all of the service users and caregivers who participated in the training. The interviews lasted between thirty and thirty-five minutes per participant. The study topic guide was based on the RESHAPE manual, which was customized for the specific context and focused on the recruitment process, overall experience, perceived benefit, perceived harm/disadvantage(s), and recommendations of PWLES and caregivers through qualitative data collected after the final training session, using an Amharic-translated interview guide. The photos captured by each participant were displayed and presented to fellow participants to narrate their recovery stories during the photovoice sessions.

Data analysis

The adopted interview guide was translated into Amharic. The data acquired were transcribed verbatim in Amharic and then translated into English by the Ethiopia site team (EG, BA). A codebook was developed via deductive and inductive approaches. The coding was then performed via Open Code version 4.03, with the same individuals conducting the interviews (two behavioral health specialists from Addis Ababa University). Intercoder agreement was checked via a sample of transcriptions, and inconsistencies were discussed so that the different coders reached the same level of understanding of each code. The gathered data were presented thematically through compiling the ideas into an organized structure. We also presented an analysis of the mental health narratives and photos provided by the participants, which were used to tell their mental illness treatment journey. The description was thus presented in line with the thematic sections. Field notes and testimonials were included in the description of the results. Finally, the analysis report was presented and validated by the participants during a workshop held with them and other stakeholders.

Supplement file 01 contains an overview of the qualitative methodological characteristics according to the COREQ guidelines [21].

Results

The results from the study are organized and presented via the following two major themes and codes:

Theme 1: recovery stories

• 1. 1.1 Before treatment.

• 2. 1.2 During treatment.

• 3. 1.3 After treatment.

Theme 2: experiences with photovoice

• 4. 2.1 Facilitating factors of participation.

• 5. 2.2 Barriers to participation.

• 6. 2.3 Perceived benefits and acceptability of photovoice training.

• 7. 2.4 Feedback and suggestions.

Theme 1: recovery stories

The recovery stories were constructed on the basis of the patient’s experiences before, during, and after treatment for mental health conditions documented during the PhotoVoice training sessions. The recovery stories illustrated the adversity and self-defined strengths, successes, or survival to depict the participants’ experiences. In addition to the brief summary of the recovery stories, individual case stories are presented, with the names of the individuals changed to maintain the confidentiality of the patient’s identity.

Before treatment

This section describes the experiences of service users with mental health conditions before accessing treatment, their struggles and the impacts on their personal lives and the lives of their family members.

Social isolation, being left out from important community life either induced by the community or self-isolation, was a core narrated hardship. For example, participants reported exclusion from idir (a traditional solidarity organization rooted in the community that was founded to offer emotional and financial help during difficult times), neighbors coffee ceremonies and other important community gatherings. Negative labelling of both PWLESs and caregivers appeared to be prominent, with different stigmatizing names given to both groups. The other negative experience reported was dropout from education and work due to stigma or the effects of mental health conditions. This also highly affects participants’ ability to lead their household, as most women living in the area where this study was conducted are housewives who handle home chores, including cooking, cleaning, laundry, and child care, in addition to participating in social activities with their community.

The physical or bodily component involves the experience of conditions, such as muscle wasting, that arise from prolonged chaining because of the mental health condition episode they experience before the treatment phase. One service user described his experience of multiple injuries because of his overconsumption of alcohol. Emotionally having low self-esteem and living with fear hinder people from doing what they love.

• I loved going to church and used to go there often, but once I was diagnosed with this condition, I was afraid that another episode might happen and that people in the neighborhood would see me. As a result, I was not able to go as often as I would have liked (female service user).

The most significant problem related to receiving treatment that participants mentioned was their preference for religious or traditional healers over medical options. This was driven by the assumption that mental illness is the outcome of the wrath of God, a family curse, an evil spirit possession, or other similar explanations. The other is stigmatization fear; participants emphasized that prior to starting seeking health care, they do not want other individuals or the public to know that they are seeking mental health treatment.

During treatment

This topic addresses how service users engage with their treatment; how family, friends, and community-based health workers support them; how they bring them to mental health care; and what difficulties they confront while receiving the treatment.

Some participants were encouraged to seek medical attention after a prolonged period of time spent looking for help from religious or traditional healing. Family members, who were thought to be reasonably knowledgeable about mental health, played an important role in this decision. Service users emphasized that community health workers also play a vital role in the identification and referral of people with potential illnesses during home visits. Primary health care givers reportedly made significant contributions to the successful continuation of care over time.

An elementary teacher at Sodo Buie noted that when I was a college student, when I started to notice symptoms of mental health conditions, after I started going to health care, a health worker helped me accept and love myself and encouraged me to continue my follow-up and not to give up on myself (female service user).

The challenges of receiving treatments that participants experienced included access to health care after starting follow-up. Specifically, since the health service coverage area’s catchment is large, service consumers are compelled to travel considerable distances, which can be discouraged and cause financial hardship for most of them.

After treatment

Service users and caregivers described how the lives of service users have changed following access to mental health care.

Almost all of the participants highlighted that they carried out their work and continuing education after receiving the necessary care. The participants included housewives, farmers, teachers and students. The ability to carry on and do effectively at what they do was one of the greatest improvements they observed.

The ability to engage in social activities and interact with their neighborhood is the other thing that they accomplished now that they were unable to do previously. In terms of personal change increasing self-worth, self-esteem, particularly the ability to believe in themselves to be healed and continue one’s normal life, is also reported.

An elementary teacher at Sodo Buie noted that I was diagnosed with this condition while attending college, and I nearly dropped out without receiving any treatment for almost three years. My family used to tie me up so I could not leave them or the neighbors. However, I noticed a significant improvement when I began visiting a healthcare institution. I have since graduated and returned to my regular life, where I teach Amharic to seventh graders (female service users).

Theme 2: experiences of photovoice

The second theme explores the experiences of PhotoVoice from the perspectives of participants, facilitating factors and barriers to participation and perceived benefits.

Facilitating factors of participation

Most of the participants previously participated in similar training, which motivated them to participate in the PhotoVoice sessions. Another motivator for participation was the understanding and empathy of facilitators who were aware of the conditions faced by those receiving mental health services.

-In the previous PhotoVoice training, I received valuable advice related to various mental health issues, which encouraged me to look forward to transferring what I gain (female service users).

Furthermore, the respondents reported that the objectives of the training aligned with the problems the participants were facing and were responsive to the needs and issues of the participants. A particular attendee said that encouragement and support from family members and neighbors were important. Many highlighted that their close and repeated contact with health facilities increased their chance of participating in the program. To continue the consecutive sessions successfully. The provision of a safe, accepting, and encouraging setting where participants feel comfortable sharing their stories was one of the essential reasons mentioned.

• -I did not experience any negative treatment from others who were not attending the training. We were motivated by the professionalism and expertise of the doctors leading the training, as well as the helpful advice they provided. We are eager to implement what we have learned in our daily lives (female service users).

• -We are eager to improve our health and well-being and therefore remain enthusiastic about attending future training sessions (female care giver).

Barriers to participation

On the other hand, discouragement from family members and the community was a significant barrier stemming from misconceptions and negative attitudes, such as the idea that mental illness can be cured only by God. Difficulty leaving other daily household duties and responsibilities at home was prominently stressed by female caregivers and service users. The other reported barrier was limited transport access to the training location, the wider catchment area of the training coverage, travel expenses and security concerns, which paused challenges for some participants to engage easily/confidently.

Some respondents reported experiencing stress when they participated in the PhotoVoice training sessions with a feeling of pressure to perform up to expectations. Although the training included basic public speaking skills, some of the service users reported fear of speaking in front of other audiences, especially while presenting to the audience. To some extent, this impeded their involvement in subsequent training sessions.

• I occasionally feel so stressed during presentations that I cannot breathe, so I took a break from the training session and asked trainers for assistance (female service users).

Perceived benefits and acceptability of photovoice training

The participants noted that the most comfortable and enjoyable aspects of the program were public speaking and writing recovery stories, which involved talking about their condition and concerns, communicating with peers, openly sharing experiences, and offering support to one another.

Another aspect that participants appreciated as a positive experience was the introduction to using a camera and capturing photos, which most participants found enjoyable given that most were from rural settings and had limited exposure to smart technology.

• I did not have a habit of taking pictures before, but I learned how to take better pictures during the training. Although it was winter and there weren’t many things to capture, I am glad I learned a new skill (female service user).

• It feels lucky to have the opportunity to share my own experiences regarding my mental health issues. I believe that someone can learn from my story just as I have learned from the experiences of others during the training. Inspiringly, people can still survive and thrive despite their challenges (female service users).

An understanding of discrimination and stigma through personal experiences and observations of the community was also reported. Most participants emphasized that stigma and discrimination towards individuals with more severe mental health issues were prominent. The community was reported to hold negative views towards individuals with mental health issues. The respondents noted that this issue was addressed well during the training. The topics of stress and its management, discussing and learning from each other about stress and ways to cope with it were also valuable parts of the training.

• We have got much knowledge regarding stress, stigmatization and others. However, I never forget the stigmatization concept, as I experience stigmatization (male service user).

Service users reported the main benefits of participation as acquiring a clearer understanding of mental health, stigma and misconceptions and being able to identify with people with similar challenges. Participating in the PhotoVoice sessions was perceived as enhancing their relationships with family members, helping to establish new friendships, and enjoying productive conversations and collaborations with others. In particular, the participants stated that it increased their confidence in their ability to return to work and support their family. For example, one service user participant stated that:

-It benefited me a lot. I can’t work previously, but now at least I am thinking on how to restart my job so that I can change myself and support my family. I also want to help others with similar problems (male service users).

With respect to the stigma response, the participants reported that they learned how to deal with stigma when they faced it. They expressed a primary concern to prevent stereotypes from impeding them from pursuing their goals and not allowing others’ misconception in the community to affect their self-perception. This was linked to a desire to become self-sufficient. Another valuable lesson reported by the respondents was the enhanced ability to take care of their own well-being, with some participants describing how they started to implement changes in their daily routines. For example, their diet and hygiene should be put in order.

• -We discuss how society can label individuals with mental illness as “not healthy” or associate them with being dependent on medication. However, during training, we learned that we should not let these stereotypes hold us back (female service users).

• -One of the main lessons I obtained from the training is that if we should prioritize our diet, cleanliness, and lifestyle, we can be as healthy as anyone else (female service user).

On the caregiver side, the participants demonstrated that the training gave them important insights into how to communicate with and approach those who have mental health conditions, as well as enhanced ways to interact by connecting with others who are experiencing similar experiences.

• The training has helped us learn to handle situations in which people may become aggressive or upset, which has changed how we approach such individuals. This has been valuable in improving our interactions with people with mental health conditions (female caregivers).

Generally, both participant groups (service users and caregivers) appeared to have had pleasant experiences in terms of exploring the recovery experiences of service users as well as providing essential tools for managing stress and stigma.

Feedback and suggestions

A common suggestion was for the training to continue in a uniform manner, underlining that the training would refresh their memory. The respondents requested expanding the scope of training to include more individuals and types of mental health conditions. The other expressed desire was to involve important stakeholders in the training, particularly religious leaders, concerning government bodies, and linking this training to the local mental health association and the wider community. Finally, one caregiver suggested that for future training programs, integrating life experiences can foster compassionate approaches that match health services to each person’s particular needs and viewpoints.

• -I would like to see more participants with mental illnesses involved in the training and for it to continue in its current successful format (female caregiver).

• -It should not focus only these people. After the association is established, every concerned body, including the government body, should be involved. If religious organizations and others work together, better results can be obtained (male caregivers).

Discussion

In this study, we examined both the experience of PhotoVoice by service users and caregivers and the resulting recovery narratives. Through the use of the photovoice method, the participants were able to capture their experiences, enabling descriptions and pictures through creative photography and storytelling.

Creating recovery narratives via PhotoVoice was found to be both acceptable and feasible for people with mental health conditions, indicating its potential use to support recovery-related outcomes such as positive identity development, empowerment, and community integration. Our data point towards participants showing a strong inclination or acceptance towards the training. Managing vulnerabilities and striving for a purposeful life are key components of personal recovery [22, 23]. Investigating visual stories is beneficial for recovery-focused mental health. Furthermore, some studies have shown that the stigma associated with providers may be minimized by learning about people’s individual recovery journeys and contributions to their communities [4, 14, 24]. The present findings reiterate the previously reported benefits to service users of sharing recovery experiences in terms of empowerment, equipping participants with crucial tools for overcoming stigma, and providing essential perspectives on how to interact and engage with communities and those who are struggling with mental health illnesses [16, 18, 25, 26].

This study broadly consists of challenging recovery narratives before initiating mental health treatment and focuses mainly on social isolation, being labelled, and physical and emotional difficulties. This mirrors the findings of an earlier study in which photographs taken by participants depicted what it is like to live with mental illness and/or substance abuse, including feelings of isolation and marginalization [11, 12, 17].

There are several interconnected aspects of mental illness recovery. A person’s ability to function better was demonstrated by their accomplishments in school and workplaces, which helped to reduce stigma and boost self-esteem and agency. The recovery theme of this study highlighted that once the service users had the required care, they resumed their jobs and furthered their educational pursuits and the capacity to continue and perform well at what they do is another of the most significant changes they recognized [27].

This study’s methodological approach makes it possible for participants to realize the social and personal aspects of recovery, interact with their neighborhood and take part in social events, and have confidence in their ability to carry on with their regular lives owing to increased levels of self-worth and self-esteem. This result supports previous research showing that recovery encompasses a variety of events in people’s daily lives that provide opportunities for involvement in meaningful activities to assist service users in appreciating their potential and ways to live well and implementing collaboration at all levels. Reducing isolation and increasing self-worth are two social aspects of rehabilitation that permeate service users’ lives. These included receiving support from and providing support to loved ones [9, 17, 24, 26, 28,29,30].

The findings from this study suggest the importance of engaging multiple members of the community and people with a range of different mental health conditions. In addition, involving different stakeholders, such as religious leaders, people with lived experiences of mental illness, and healthcare workers, in this type of participatory training may be more impactful. Previous research on PhotoVoice has identified this type of intervention as particularly useful through enabling participants to share inspirational recovery stories, reflect back on their challenges and share lessons with their community. The use of recovery stories coupled with imagery enhanced communication and empathy among service users and healthcare workers.

One of the strongest points of this study is how the PhotoVoice methodology allowed researchers to develop further into the participants’ subjective experiences and develop empathy. One of the potential limitations of this study is that the training following previously established connections with the facilitator in the service setting may have had an impact on high positive respondent engagement. Considering that some individuals had prior experiences similar to this one, the results may not be entirely attributable to this training. Future research may enhance the validity of PhotoVoice data from a wider range of people included in the sample and the process of training led by co-facilitation.

Conclusion

Using participatory approaches such as PhotoVoice helps empower people with lived experiences in describing their mental health challenges and coping strategies to their caregivers and to their health workers. The approach also allows service users to play a more proactive role in sharing their experiences with other people affected by mental health conditions and caregivers so that care givers can be more empathetic. In addition, the results identified the potential to involve people with lived experiences, empowered through this training, to become involved in grassroots-level advocacy for mental health services by bringing people who are the targets of stigma and discrimination to the fore and providing opportunities to have their voices heard. From this study, we understand that people with mental health conditions pass through different and complex recovery processes, mainly because of stigma, discrimination and a lack of knowledge about mental health services and the long-term nature of some types of mental illnesses. Therefore, participatory and empowerment approaches are helpful for understanding and addressing the lived experiences and needs of service users and their caregivers.