Clients' experiences of navigating boundaries in EIP services
Research type
Research Study
Full title
Service users’ experiences of navigating boundaries in the relationship with their care-coordinators in Early Intervention in Psychosis services and the potential impact of the client’s culture on navigating and experiencing the boundaries.
IRAS ID
332871
Contact name
Sandra Marzec
Contact email
Sponsor organisation
Canterbury Christ Church University
Clinicaltrials.gov Identifier
N/A, n/a
Duration of Study in the UK
1 years, 1 months, 29 days
Research summary
Research Summary
The main aim of this study is to investigate service users’ experiences of navigating boundaries in the relationship with their care-coordinators in Early Intervention in Psychosis (EIP) services.The aim is to recruit 10-12 participants from the Early Interventions in Psychosis Services in Bexley, Greenwich, and Bromley (OXLEAS NHS Foundation Trust). The semi-structured interviews will be used to gather data from participants. The research will provide valuable information in relation to clients’ care, including the cultural aspect of the care and the possible need for its adaptation to the client’s cultural needs.
The potential participants will need to meet inclusion criteria, which comprise:
• Engagement with the EIP service for more than 6 months to ensure that a relationship with the care-coordinator has been developed and the client is able to comment on that relationship.
• Symptoms of the psychosis need to be assessed by a clinician/care-coordinator and deemed as managed well enough to be able to engage in the interview.
• Risks are to be discussed prior to recruitment with the service user’s care coordinator or a team member who knows them well.
• Currently in the community due to the possible distress of the symptoms while in the hospital and possible difficulties in engagement with the interview while in the hospital.
Summary of Results
Three main themes were found, each with subthemes: Role Complexity, Blurred Lines, and Self-Disclosure. It is important to note that within these themes, there are variations in how people experience them. Not everyone will relate to all of the themes. An overall theme of Respect was also highlighted, with all participants mentioning respect as key to managing boundaries in their relationship with their care coordinator. Below, all the themes are described.
Respect
Respect emerged as an overall theme across all participants, who highlighted its importance in navigating boundaries with care coordinators (CCs). For many, respect was fundamental to establishing and maintaining a positive relationship. It involved not only professional recognition but also personal acknowledgment of the CC’s identity and understanding of differences. Respect was crucial in acknowledging cultural and personal differences, with participants appreciating when CCs demonstrated empathy and avoided judgment. Cultural aspects of respect were also significant, as different cultures have varying practices for showing respect. Ultimately, respect was seen as essential for building trust and ensuring a supportive therapeutic relationship.
Role Complexity
Between Friendly and Professional. The relationship with the care coordinator (CC) was described by participants as a mix of friendly and professional. Some participants felt that the CC should be like a friend to better support them. Many felt that a personal connection was important for openness and trust, as it helped them feel more comfortable sharing. However, participants also recognised the need for professionalism, including working towards shared goals and being efficient with time. Some mentioned that the CC's limited availability made the relationship feel more professional, and a few were very clear about its professional nature. Overall, while professionalism was important, having a personal connection was key to creating a space where participants felt safe and able to be vulnerable.
Flexible Support. All participants saw that care coordinators offered different types of support, like helping with medications, getting back into society, achieving goals, and providing emotional support. The support was described as flexible and based on what each person needed at the time. Care coordinators also helped keep clients motivated to stick to their goals and continue recovering. Sometimes, care coordinators took part in activities like walking or sport events to help clients feel more comfortable getting back into society. These activities showed how care coordinators had to adjust their usual boundaries to fit each person’s needs.
Power Imbalance. Some participants noticed that while care coordinators were flexible with the support they offered, they sometimes felt pressured to accept help, which made them uncomfortable. Participants often found it difficult to refuse home visits and felt there was an expectation to accept support. Cultural differences may have made it harder for some clients to accept certain types of support, such as help with household chores or practical tasks, and they struggled to communicate this to their care coordinators. The desire for privacy was also a factor, as some participants did not want their family to know they were using the service.
Navigating through Stigma. Five out of ten participants mentioned stigma related to mental health, especially psychosis, in their culture. One participant explained how the word for psychosis in their language translates to "crazy," which adds to negative views. Due to this stigma, many participants described "suffering in silence," as seeking help is often discouraged or hard to access. Mental health issues are usually handled privately within families. Some participants also spoke about how their cultures value privacy and secrecy, which can make it difficult to seek or accept help. For example, some were uncomfortable with home visits from care coordinators because they hadn't told their families about using the service, and they worried about confidentiality.
Blurred lines
Unspoken unless crossed. Eight out of ten participants noted that boundaries with care coordinators (CCs) were rarely discussed unless an issue arose, typically when boundaries were crossed. Some found it difficult to define clear boundaries, and cultural differences made it harder to address these issues without a space for open discussions about boundaries. Some participants were also hesitant to talk about boundaries, fearing it might suggest something was wrong or that they had caused trouble. This reluctance could reinforce power imbalances, as participants may feel unable to assert their boundaries. Despite not talking about boundaries openly, participants recognised that boundaries were shaped by themselves, their CCs, and the service.
Two (or more) sides of the line. Many participants recognised that setting boundaries involves multiple aspects, including their own boundaries, their care coordinator's (CC's) boundaries, and broader service boundaries. Some felt that while CCs set certain limits, they also played an active role in defining their own boundaries and expected their CC to acknowledge and respect them. Respect for personal and cultural boundaries was seen as crucial in the therapeutic relationship. While some participants viewed boundary-setting as a mutual process, others highlighted the role of the service in defining boundaries. It was also noted that, although service guidelines shape some boundaries, they are not always consistent.
Contextual. Participants recognised that boundaries could change depending on the length of the relationship, the setting, and the care coordinator's (CC’s) gender. Some noted that over time, their relationship with the CC became more personal. The setting also influenced how boundaries were viewed, with office environments requiring more formal boundaries, while informal settings allowed for greater flexibility. Gender played a role as well, with some participants feeling more comfortable engaging in activities outside the office with a CC of the same gender, potentially linked to cultural norms around gender roles. Participants had to carefully navigate these shifting boundaries, taking all these factors into account.
Mindful Interactions. This subtheme highlighted various aspects of mindful interactions, such as avoiding inappropriate comments, maintaining a non-judgmental attitude, and being aware of cultural differences. All ten participants recognized the importance of staying mindful in their interactions with care coordinators (CCs). Many participants emphasized being careful in communication to avoid saying anything inappropriate, and some felt their CCs needed to do the same. Being mindful was also seen as crucial to prevent uncomfortable situations. Some participants mentioned adjusting their communication based on cultural context, known as code-switching. Some felt more comfortable with CCs from similar cultural backgrounds, while others found it possible to build a relationship and connection with CCs from different cultural backgrounds who showed understanding and a non-judgmental attitude.
Self-disclosure
Client as a focus. Six out of ten participants observed that they did most of the sharing during their sessions with their care coordinators (CCs). Participants often shared more personal details than the CCs, recognizing this imbalance as part of the dynamic where they were the ones seeking help. Some participants understood that the CC, needing less support, would naturally share less about their personal life. The therapeutic setting provided participants with space to focus on their own needs, with the expectation of being listened to without the need for reciprocation, something they valued compared to other relationships.
Facilitating relationship-building. Participants recognised that while the primary focus of their relationship with care coordinators (CCs) was on their own experiences, the CC’s self-disclosure also played an important role in building a stronger connection. Nine out of ten participants noted that sharing personal information helped build rapport and trust. Many felt that the CC’s self-disclosure normalised their own experiences, making them feel less isolated and more understood. Some participants even expressed a desire for more self-disclosure from CCs, believing it would reduce the gap between the professional and the client, although not all forms of self-disclosure were seen as beneficial.
Importance of context. Most participants felt that self-disclosure was helpful but recognised it needed to be used carefully in a therapeutic context. They believed the focus of the relationship should remain balanced, with the client guiding when and how personal information is shared. Some participants stressed the importance of timing and avoiding sharing too much, as it could disrupt the flow of the session. They also noted that if a care coordinator's personal sharing didn't align with the client's cultural experiences, it could create a sense of disconnection rather than understanding.REC name
Wales REC 4
REC reference
23/WA/0320
Date of REC Opinion
11 Jan 2024
REC opinion
Further Information Favourable Opinion