Hostname: page-component-7bb8b95d7b-dtkg6 Total loading time: 0 Render date: 2024-09-27T23:26:54.019Z Has data issue: true hasContentIssue false

A qualitative study exploring the acceptability of a telehealth intervention for family members of people experiencing a first episode psychosis: PERCEPTION

Published online by Cambridge University Press:  27 September 2024

David Marshall*
Affiliation:
DETECT Early Intervention in Psychosis Service, Dublin, Ireland
Donal O’ Keeffe
Affiliation:
ARCHES Recovery College, Dublin, Ireland Mental Health Ireland, Dublin, Ireland
Megan Carroll
Affiliation:
Cluain Mhuire Community Mental Health Services, Dublin, Ireland
Emily Cleary
Affiliation:
Cluain Mhuire Community Mental Health Services, Dublin, Ireland
Dearbhail Ryan
Affiliation:
Cluain Mhuire Community Mental Health Services, Dublin, Ireland
Eimear Counihan
Affiliation:
National Forensic Mental Health Service, Dublin, Ireland
Sean Naughton
Affiliation:
DETECT Early Intervention in Psychosis Service, Dublin, Ireland School of Medicine, Health Sciences Centre, University College Dublin, Dublin, Ireland
Eoin Geary
Affiliation:
St Michael’s Unit, North Lee Mental Health Service, Mercy University Hospital, Cork, Ireland
Mary Clarke
Affiliation:
DETECT Early Intervention in Psychosis Service, Dublin, Ireland School of Medicine, Health Sciences Centre, University College Dublin, Dublin, Ireland
*
Corresponding author: David Marshall; Email: david.marshall@sjog.ie
Rights & Permissions [Opens in a new window]

Abstract

Objectives:

Family members of people experiencing a first-episode psychosis (FEP) can experience high levels of carer burden, stigma, emotional challenges, and uncertainty. This indicates the need for support and psychoeducation. To address these needs during the COVID-19 pandemic, we developed a multidisciplinary, blended, telehealth intervention, incorporating psychoeducation and peer support, for family members of FEP service users: PERCEPTION (PsychoEducation for Relatives of people Currently Experiencing Psychosis using Telehealth, an In-person meeting, and ONline peer support). The aim of the study was to explore the acceptability of PERCEPTION for family members of people who have experienced an FEP.

Methods:

Ten semi-structured interviews were conducted online via Zoom and audio recorded. Maximum variation sampling was used to recruit a sample balanced across age, gender, relatives’ prior mental health service use experience, and participants’ relationship with the family member experiencing psychosis. Data were analysed by hand using reflexive thematic analysis.

Results:

Four themes were produced: ‘Developing confidence in understanding and responding to psychosis’; ‘Navigating the small challenges of a broadly acceptable and desirable intervention’; ‘Timely support enriches the intervention’s meaning’; and ‘Dealing with the realities of carer burden’.

Conclusions:

Broadly speaking, PERCEPTION was experienced as acceptable, with the convenient, safe, and supportive environment, and challenges in engagement being highlighted by participants. Data point to a gap in service provision for long-term self-care support for relatives to reduce carer burden. Providing both in-person and online interventions, depending on individuals’ preference and needs, may help remove barriers for family members accessing help.

Type
Original Research
Copyright
© The Author(s), 2024. Published by Cambridge University Press on behalf of College of Psychiatrists of Ireland

Introduction

The processes of experiencing psychosis and pursuing well-being are so profoundly dissonant from consensus reality that it often causes rifts and damages relationships between people in recovery and their family members (Marriott et al., Reference Marriott, Bernard, Larkin, Boden-Stuart and Larkin2024). Reclaiming confidence in one’s senses and beliefs following a psychotic episode, living with the impact of psychosis on self and identity, navigating agency and powerlessness in psychotic experiences, and pursuing coherence in psychosis related memories are all very difficult to understand if you have never experienced psychosis (O’Keeffe et al., Reference O’Keeffe, Keogh and Higgins2021; Dijkstra et al., Reference Dijkstra, Rijkeboer, Noordhof, Boyette, Berendsen, de Koning, Japien Bennen, Hofman and de Haan2024). Often family members struggle to communicate with their loved one, are unsure of what psychosis means, and unclear of its aetiology. They also can fear chronicity, find it difficult to deal with uncertainty, and feel stigmatised and deeply isolated (Estradé et al., 2023). Consequently, supporting family members in sense making, coping strategy development, and empowerment is a vital component of any mental health service.

Effective, time-limited, multidisciplinary treatment, in the form of Early Intervention in Psychosis services, has become the standard of care for individuals experiencing psychosis (National Institute for Health and Care Excellence 2014). Alongside antipsychotic medication, diverse psychological, vocational, and family interventions are imperative in facilitating sustained recovery and community integration (Boydell et al., Reference Boydell, Onwumere, Dutta, Bhavsar, Hill, Morgan, Dazzan, Morgan, Pararajan, Kuipers, Jones, Murray and Fearon2014; Claxton et al., Reference Claxton, Onwumere and Fornells-Ambrojo2017). Caring for, and supporting, a person experiencing psychosis places considerable demands on family members (Mui et al., Reference Mui, Chan, Chan, Hui, Chang, Lee and Chen2019). There is evidence that family members can themselves be adversely affected by their relative’s psychosis, with many reporting feelings of loss, stigma, fear, and lower levels of social support, resulting in increased carer burden (Dillinger & Kersun, Reference Dillinger and Kersun2020). Metaanalytic evidence suggests that family intervention in early psychosis decreases global morbidities, negative caregiving experiences, and expressed emotion within the family unit (Sin et al., Reference Sin, Gillard, Spain, Cornelius, Chen and Henderson2017).

The COVID-19 pandemic presented considerable social, economic, and healthcare challenges. On March 11, 2020, the World Health Organization declared a global pandemic and urged countries to take action to reduce the rate of contagion. Within Ireland, mitigation measures, such as the request for individuals to work from home and for vulnerable populations to ‘cocoon’, interrupted social and community networks, recreational activities, in-person learning, and access to healthcare (Hyland et al., Reference Hyland, Shevlin, Murphy, McBride, Fox, Bondjers, Karatzias, Bentall, Martinez and Vallières2021). This resulted in significant, unprecedented widespread stress that took many forms.

Consequently, continuity in the provision of Early Intervention in Psychosis Services for people experiencing a first-episode psychosis (FEP) and their families was of sustained importance in this context (O’Donoghue et al., Reference O’Donoghue, O’Connor, Thompson and McGorry2021). However, amid the pandemic, providing multifaceted interventions in an environment of reduced in-person interaction and social distancing posed significant challenges to how support was offered. Unprecedented changes to the operation of healthcare services ensued. Healthcare staff had to acquire new skills and rapidly develop novel ways of working, including providing assessment and intervention virtually. To ensure continuity in family support and respond to these challenges, we developed a novel, multidisciplinary, blended, telehealth intervention, incorporating psychoeducation and peer support, for family members of FEP service users: PERCEPTION (PsychoEducation for Relatives of people Currently Experiencing Psychosis using Telehealth, an In-person meeting, and ONline peer support).

Little research has been conducted into the acceptability of telehealth interventions for family members of people experiencing an FEP. Five studies have previously indicated that online telehealth interventions are feasible, acceptable, and effective in reducing stress, enhancing knowledge about prognosis, and increasing perceived social support in families (Chan et al., Reference Chan, Tse, Sit, Hui, Lee, Chang and Chen2016; Rus-Calafell et al., Reference Rus-Calafell, Teismann, Kullmann, Alatas, Ballero-Reque, Holewa, Rüsberg, Brüne, Mercedes and Schneider2024; Rotondi et al., Reference Rotondi, Haas, Anderson, Newhill, Spring, Ganguli, Gardner and Rosenstock2005; Rotondi et al., Reference Rotondi, Anderson, Haas, Eack, Spring, Ganguli, Newhill and Rosenstock2010; Sin et al., Reference Sin, Henderson and Norman2014). However, these telehealth interventions were based on websites that participants could log onto and engage with. This factor limits the transferability of findings to people who would not have the digital confidence to navigate such websites. Two other studies included a combination of people with schizophrenia and their family members (Rotondi et al., Reference Rotondi, Haas, Anderson, Newhill, Spring, Ganguli, Gardner and Rosenstock2005; Rotondi et al., Reference Rotondi, Anderson, Haas, Eack, Spring, Ganguli, Newhill and Rosenstock2010). Thus, the family perspective may have been difficult to distil. We could identify no study in the literature that evaluated an intervention that combined psychoeducation, peer support, and online and in-person sessions, for families of people experiencing an FEP.

To address these gaps in the literature, we aimed to explore the acceptability of PERCEPTION. A descriptive account of PERCEPTION’s development and implementation, with reflections from the clinicians involved, on supporting families using this approach has previously been published in this journal (O’Keeffe et al., Reference O’Keeffe, Marshall, Wheeler, Allen, Ronan, Buckley, Counihan and Clarke2023).

Methodology

Context

This study was conducted in an Early Intervention in Psychosis Service in Ireland, Dublin and East Treatment and Early Care Team (DETECT). DETECT has been delivering in-person psychoeducation for family members since its inception in 2006. In response to the COVID-19 pandemic, the existing in-person family psychoeducation programme was converted into a blended intervention (consisting of online and in-person components).

Intervention description

PERCEPTION is a multidisciplinary, blended, telehealth intervention, incorporating psychoeducation and peer support, for family members of people experiencing an FEP. It aims to educate families about psychosis, its treatment and the factors that influence recovery; provide guidance on communicating with a family member experiencing psychosis; support relapse prevention; and offer a safe space for families to share their lived experience and learn from each other through mutual peer support. PERCEPTION was cofacilitated by Social Work, Psychology, and Psychiatry.

Prior to commencement, family members were met in-person for a 60-minute individual session. This session was delivered by a Senior Social Worker and focused on assessing readiness and motivation to participate; offering brief emotional and psychological support; and providing initial information on what is psychosis, what to expect from treatment, and the interventions of the Early Intervention in Psychosis service. COVID-19 protocols were adhered to during these meetings: temperatures were taken, antibacterial handwash was used, masks were worn, and social distancing practiced. Following this, four 90-minute online sessions were delivered over the platform Zoom. ‘Zoom coaching’ was offered at the beginning for those unfamiliar with technology or use of the Zoom platform.

Each intervention module comprised three components: online psychoeducation (30 minutes); an online ‘Questions and Answers’ session (15 minutes); and an online mutual peer support discussion session (45 minutes). The latter — underpinned by the principles of shared responsibility, respect, and collective agreement of what is beneficial — offered families a safe supportive empathic space to voluntarily come together to help each other address common issues and shared concerns (Davidson et al., Reference Davidson, Chinman, Kloos, Weingarten, Stayne and Tebes1999; Mead et al., Reference Mead, Hilton and Curtis2001). Psychoeducation and peer support theory informed intervention design (Castelein et al., Reference Castelein, Bruggeman, Davidson and Gaag2015; Maheshwari et al., Reference Maheshwari, Manoha, Chandran, Rao, Shrivastava and De Sousa2020). More detail on PERCEPTION curriculum, structure, and intervention components is provided in our previous publication (O’Keeffe et al., Reference O’Keeffe, Marshall, Wheeler, Allen, Ronan, Buckley, Counihan and Clarke2023).

Design and ethics

This study is an acceptability evaluation of an intervention using qualitative methods. We collected data by conducting semi-structured interviews with 10 family members of people who had recently experienced an FEP attending the DETECT service. Methodology and findings are reported on in a manner that corresponds with the Standards for Reporting Qualitative Research (O’Brien et al., Reference O’Brien, Harris, Beckman, Reed and Cook2014). Reflexive thematic analysis with clear ontological and epistemological positions informed data analysis.

Ethical approval was sought from, and granted by, the St. John of God Research Ethics Committee. Consequently, it has been conducted in accordance with the ethical standards laid down in the Declaration of Helsinki and its later amendments. We developed a protocol to manage distress if encountered during data collection. No such distress was communicated during the interviews. Data were stored as electronic files on an encrypted server with participants’ consent.

Participants, sampling, and recruitment

People were considered potential participants in our study if they were aged 18 years or over, had participated in PERCEPTION between September and October 2020, and were a family member of someone who had recently experienced an FEP attending the DETECT service. Maximum variation sampling was used to recruit a sample balanced across age, gender, relatives’ prior mental health service use experience, and participants’ relationship with the family member who is experiencing psychosis. Upon completing PERCEPTION and being identified as someone who could add diversity to our sample, family members were invited by the Clinical Gatekeeper to consent to sharing their contact details with the research team. If they were agreeable to be contacted, a research team member explained the study to them, answered any questions they had, and obtained written informed consent to participate if they were happy to do so.

Data collection

Ten semi-structured interviews, lasting between 30 min–60 min (mean = 45 min), were conducted online via Zoom, audio recorded, and transcribed by DR. Interviews were guided by a semi-structured interview topic guide focused on eliciting how PERCEPTION was experienced by participants (see Table 1). We stopped collecting data when dataset richness was deemed to be sufficient (Malterud et al., Reference Malterud, Siersma and Guassora2016). An appraisal of information power (study characteristics that influence dataset quality necessary to achieve objectives) was performed to determine this.

Table 1. Summary of interview topic guide

Data analysis

The interviews were transcribed, and transcription accuracy was checked by the research team. Any personal identifiers were removed and the dataset pseudonymised. Data were analysed by hand using reflexive thematic analysis; where the researcher is positioned as active in the research process rather than someone who uncovers ‘emerging’ themes. This approach to data analysis allows data to be classified, evaluated, and reported, resulting in a succinct, clear, and understandable thematic structure that describes the dataset as a whole. It is an accessible and theoretically flexible approach, which emphasises the centrality of researcher subjectivity and reflexivity, and can provide a rich and detailed account of qualitative data (Braun and Clarke Reference Braun and Clarke2022).

We performed the 6 steps of reflexive thematic analysis in line with the guidance of the originators of this approach: familiarising yourself with the data; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and producing the report. Analysis was essentialist, inductive, exploratory, and guided by relativism. Data were analysed by coding for key ideas, concepts, and patterns, which were then assessed for similarities and differences and combined into themes to illuminate participants’ experience of PERCEPTION.

Rigour, quality, and reflexivity

To promote quality and rigour in all aspects of the study process, we demonstrated commitment by persevering to recruit sufficient participants. We used a clear audit trail clarifying the research strategy, data analysis, and findings. The interviewer (DR) refined and practiced her interview skills to ensure interviews were sensitive to the participant’s context. Analysis was thorough and shaped by extensive reflexivity. Finally, quotes used were always contextualised and never allowed to speak for themselves.

One author is a Senior Social Worker, one author an Academic Psychologist, three authors are Assistant Psychologists, one author is a Senior Registrar, and three authors are Consultant Psychiatrists. We engaged in reflexivity throughout the research process to explore our role in data collection, analysis, and interpretation. This was done to be aware of our own biases, to dialogue with them, and to be cognisant of how these could impact findings. The interviewer (DR) attempted to remain impartial, non-judgmental, and broad-minded in her questioning for participants’ authentic experience to be elicited.

When analysing the dataset, we tried to acknowledge our assumptions at the beginning of the process, to have a heightened awareness of them, and to approach the analysis in an open and neutral way. For example, one author predicted that participants would feel generally positive about PERCEPTION due to the informal feedback she received when facilitating it. To reduce the impact of these assumptions, we actively searched for data incongruent with them.

Results

Information on the sample is presented in Table 2. Four shared themes were generated and will now be outlined. Figure 1 provides an overview of the thematic structure developed. Additional data supporting themes developed are displayed in Appendix 1.

Figure 1. Overview of thematic structure.

Table 2. Sample demographics and relative’s psychiatric diagnoses

Developing confidence in understanding and responding to psychosis

The first theme describes how PERCEPTION’s education about psychosis, medication, and communication made participants feel they had more tools to help them support their family member. Participants spoke of how the internet can be a daunting source of information about psychosis: sometimes inaccurate, often overwhelming, and not always relevant to their family member. PERCEPTION was viewed as a way to redress this by providing knowledge, teaching skills, and enhancing confidence. It was described as offering correct, evidenced based information on the likely trajectory and outcome of psychosis; assisting participants to manage psychiatric stigma and helping them understand the process of recovery.

Many participants experienced psychiatric stigma, particularly around their relative’s use of antipsychotics. Lisa was resistant about her son going on medication as she felt that he would change as a person:

“[By participating in PERCEPTION] I realised the extent of the stigma that surrounded mental illness but that was also around medication which [I] had inside myself as well”.

Lisa came to accept medication in her son’s life and acknowledge its positive effect over time. Prior to receiving PERCEPTION, she had searched online and discovered much misinformation. Consequently, Lisa found the evidence-based knowledge shared at intervention sessions beneficial.

Psychiatric stigma led some participants to feel as if they needed to retreat into ‘hiding’. This involved feeling compelled to conceal their struggle, being resistant to their relative taking medication, and denying the need for help. Following PERCEPTION, participants described feeling more prepared for a potential relapse and more skilled in interacting with their relative due to enhanced communication skills. Consequently, some communicated that they felt more hopeful for the future.

Jack took part in PERCEPTION because his daughter began to experience psychosis in school. He described wanting to receive the intervention to help his daughter overcome the life challenges that psychosis brings. Jack noted that he felt bewildered looking at information about psychosis online. In the following interview extract, he described how, through intervention attendance, learning about the recovery process and understanding how mental health care works helped him:

“Being able to understand the treatment and recovery provided us with hope which we found incredibly valuable. Our family was surprised by how long and slow the recovery process is; we found it very helpful to have somebody accompany us in trying to understand the process”.

Navigating the small challenges of a broadly acceptable and desirable intervention

The second theme describes participants’ openness and acceptance to receiving support both online and in-person. Participants noted that having an opportunity to discuss their individual needs in-person prior to starting the intervention was helpful. They described how it aided them in understanding what to expect. Many commented on the value of being walked through the Zoom platform prior to commencing and being supported to manage technical difficulties as they occurred.

One participant, Adam, decided to participate in PERCEPTION following his daughter’s experience of an FEP. During his interview, Adam noted that meeting a facilitator in person was vital, as this built rapport that would provide continuous support throughout the intervention:

“Well, that [the initial session] was really important you know, and it meant that we had a shoulder to lean on as it were, even if we didn’t have to use it. As it happened, I did phone DM [PERCEPTION facilitator] once or twice for advice. It was really good to know that you could do that.”

In general, participants appreciated the opportunity to avail of an intervention they liked, their experience was broadly positive, and they found the intervention acceptable. Some participants reported that PERCEPTION helped them feel less alone, stigmatised, and abandoned by society during the COVID-19 pandemic. For many, the online platform Zoom was perceived as a safe and supportive space, where they could share difficulties, receive helpful information, and learn ways of managing difficulties to integrate into their lives. Participants acknowledged the emotional value of opening up about their experience of psychosis in their family online. They commented on how PERCEPTION being mostly online increased accessibility. However, some had to navigate a small number of challenges while participating (e.g., feeling comfortable sharing online, troubleshooting with technology, and having the confidence to ask questions online).

Chris decided to participate in PERCEPTION after learning his nephew experienced an FEP. In his interview, he highlighted difficulties encountered in building rapport and connections with the other families and facilitators. He commented that it takes time to feel comfortable sharing personal experiences over Zoom. However, as time went on, Chris was able to navigate this by committing to the intervention. Gradually he felt supported by being in a familiar, safe, and acceptable space online. In the following quote from his interview, Chris describes how as time went on, he found that joining PERCEPTION from home made him more at ease interacting with families and the facilitators:

“In a classroom setting it’s brilliant, but in the comfort of your own home you may be a little bit more comfortable in the aspect where say you had a question in a classroom you might not want to put your hand up type of thing. You don’t know a lot of the people around you in close proximity, whereas you feel a little bit safer when you’re in your little shell on screen to share with others”.

Timely support enriches the intervention’s meaning

The third theme describes the importance of the early delivery of PERCEPTION following an FEP diagnosis. Many participants spoke of how early intervention is crucial as it is beneficial to receive information, advice, and guidance as early as possible. Some mentioned how going even a few months without support was too long. Participants described the intervention as providing a safe space to both receive timely practical and emotional support and talk freely about their experience to the other family members and clinicians.

Repeatedly listening to others share their experiences was reported by many participants as invaluable in fostering unity, connectedness, and belonging. PERCEPTION offered a way to connect on a deep level, empathise with others’ journeys, and provide practical and emotional support. Many participants found comfort in knowing early in the recovery process that they were not alone in their experiences.

Jessica attended PERCEPTION seeking help for her family following her son’s diagnosis of an FEP, which she found ‘traumatic’. She did not know what way to turn or what to do and needed immediate support. In the following quote from her interview, Jessica describes the value of timely peer support through PERCEPTION:

“It was helpful to have [peer] support early on. The longer the sessions went on, people gave each other advice, [it] can be powerful to hear it [advice] from others who are going through similar things. Support with the family members in turn helps with the person who has psychosis”.

Dealing with the realities of caregiver burden

The fourth theme describes participants’ experience of adjusting to, and caring for, their relative following a diagnosis of an FEP. For participants, caregiver burden encompassed many complex experiences and emotions. These included feeling overwhelmed, blaming the self, and feeling guilt. Some participants described how challenging psychosis is, despite doing everything they could for their family member.

For most participants, the intervention highlighted the importance of their own self-care and well-being, the integral role that the family unit plays in the recovery process, and the value of supporting their relative. Many participants emphasised the desire for both more structured self-care guidance and somewhere they could continue to return to for support at different points along the trajectory of their family member’s recovery.

Sarah decided to attend PERCEPTION after her partner experienced an FEP. For Sarah, attending the intervention gave her a new perspective in her caregiving role. She became aware of the importance of looking after herself and her own well-being, as well as supporting her partner. In the following interview excerpt, Sarah explains that by receiving the intervention to understand and learn about psychosis, she also dealt with the caregiver burden by enhancing her own coping strategies:

“I wanted the tools and a little bit of an understanding of the disease itself, but also to try to see whether I could learn something to kind of help me through this difficult period as well… and I think it did the job”.

Discussion

Main findings

This study investigated the acceptability of a multidisciplinary, blended, telehealth intervention, incorporating psychoeducation and peer support, for family members of FEP service users: PERCEPTION. Broadly speaking, the intervention was experienced as acceptable, with the convenient, safe, and supportive environment and challenges in engagement being highlighted by participants. In general, participants reported that PERCEPTION increased their knowledge about psychosis, its treatment, and relapse prevention and this in turn increased their confidence in responding to the needs of, and helping support, their relative. Participants described how they deeply valued the opportunity to attend the intervention, share challenges and coping strategies, and receive helpful information.

As PERCEPTION was mostly delivered online, participants reported accessibility was a major advantage. The diverse perspectives presented may reflect how people can assign different degrees of importance to attending an intervention in-person and the accessibility of a remote interaction. Our findings largely correspond with those of previous authors who have also reported good acceptability for telehealth interventions for families with a relative experiencing psychosis (Chan et al., Reference Chan, Tse, Sit, Hui, Lee, Chang and Chen2016; Rotondi et al., Reference Rotondi, Haas, Anderson, Newhill, Spring, Ganguli, Gardner and Rosenstock2005, Rotondi et al., Reference Rotondi, Anderson, Haas, Eack, Spring, Ganguli, Newhill and Rosenstock2010; Sin et al., Reference Sin, Henderson and Norman2014). However, these studies relied on participants’ self-directed engagement with intervention material and a somewhat ‘competent’ level of digital literacy (Lobban et al., Reference Lobban, Appelbe, Appleton, Billsborough, Fisher and Foster2020). Our findings nuance this knowledge by demonstrating the value of the blended approach and the pre-intervention coaching in the use of the Zoom platform, as well as the unique challenges of delivering this form of service model. Further, our study adds to this literature by exploring the perspectives of different types of family members, including parents, siblings, and more extended family members.

Carer burden, self-care, and family congruence

Some participants recounted how before their family member’s FEP diagnosis, they knew very little about psychosis and felt overwhelmed by the abundance of information online which was not always accurate. This corresponds with a recent expert assessment of the quality of psychosis information websites online (Wilhelm et al., Reference Wilhelm, Handley, McHugh, Lowenstein and Arrold2022). In many cases, in the process of obtaining the best help for their family member, participants stopped caring for themselves. Our data suggest that PERCEPTION has the potential to improve family members’ coping and wellbeing. Findings highlight the complex feelings associated with carer burden and the need for clinicians to follow up with families about their self-care over time. If, in accordance with Family Systems Theory, we consider families as an interdependent emotional unit (Bowen Reference Bowen1966), then our data suggest that PERCEPTION has the potential to play a role in enhancing understanding of, and congruence between, different family member perspectives during what can often be a time of emotional instability and disorganisation.

Psychiatric stigma and isolation for families

Family members of people with mental illness can internalise the stigma surrounding it, which can impact their own self-esteem (Gonzalez-Torres et al., Reference Gonzalez-Torres, Oraa, Aristegui, Aranzazu and Guimon2007). The struggle with the impact of psychiatric stigma was evident throughout our interviews. This can make it difficult for individuals to seek information or feel comfortable opening up about what is going on in their family. Hence, it is crucial that people have a safe and confidential space to ask clinicians for advice and to learn from the lived experience of others. Many participants described feeling less stigmatised and more optimistic about recovery after listening to other family experiences across the FEP trajectory. Therefore, participating in PERCEPTION may offer one way for families to redress recovery pessimism, psychiatric stigma, and isolation.

Limitations

Findings should be considered in the context of several limitations. Our data reflect the experiences of a specific sample. This may impact transferability. Although our study had a 50:50 ratio between sexes, the most common relative’s psychiatric diagnosis was substance induced psychosis, and there was no ethnic variation among the sample. There is also recruitment bias potential, as family members with a pre-established interest in psychoeducation or peer support may have been more likely to participate.

As participants received PERCEPTION during the COVID-19 pandemic, carer burden and social isolation may have been heightened by the primary and secondary effects of the virus outbreak. As a result, the intervention may have been more valued by family members at this time. Findings may also have been influenced by how the pandemic and its restrictions made people desire in-person interaction more and become more accustomed to, and skilled in, technology use. Finally, although every effort was made to enhance the rigor of analysis, qualitative analysis by its nature is subjective and consequently is subject to interpretative bias.

Implications

PERCEPTION has the potential to help families feel less isolated and provide vitally needed support. Its blended nature can reach a wider population, while still providing a safe and confidential environment. Our data point to a gap in service provision for long-term self-care support for such families. Addressing this gap may help reduce carer burden.

Future directions

Further research in the post COVID-19 era is required to ascertain family members’ and clinicians’ preferences for online or in-person psychoeducation and peer support in FEP. Now that PERCEPTION’s acceptability has been explored, an investigation of intervention efficacy using a robust study design (e.g., an adequately powered randomised controlled trial) could be considered. This would support decision making for service model development to meet the complex needs of families mid, or immediately post, FEP.

Conclusion

Family members of people experiencing psychosis considered PERCEPTION to be largely acceptable when delivered in an Early Intervention in Psychosis service. The intervention has the potential to be a helpful and easily accessible form of psychoeducation and peer support for this high need group who are at risk of psychological distress and psychiatric illness themselves (Ibrahim et al., Reference Ibrahim, Ong, Wahab, Che Din, Ahmad, Ami, Sin Siau and Mohamad2022). Further evaluation is required in different settings, especially regarding the benefits and potential disadvantages of blended interventions, and the potential consequences of making digital literacy a requirement for receipt of family support. Our findings should not be interpreted as evidence to support wider implementation until a stronger evidence base can be established.

Supplementary material

The supplementary material for this article can be found at https://doi.org/10.1017/ipm.2024.37.

Acknowledgements

The authors would like to acknowledge the family members who participated in this study and the Saint John of God Community Services Clg for providing the technology needed to deliver PERCEPTION. The authors would also like to thank our Clinical Gatekeeper Felicity Fanning.

Author contributions

All authors meet the International Committee of Medical Journal Editors’ criteria for authorship. DM, MC, EC, and DR wrote the first draft of this manuscript. All authors critically edited and revised the work and agree to be accountable for all aspects of the study. All authors conceived of and designed the study; collected, analysed, and interpreted the data; and contributed to data analysis. MC and DOK provided academic supervision for research activity planning and execution.

Financial support

This research received no specific grant from any funding agency, commercial, or not-for-profit sectors.

Competing interests

None.

Ethical standards

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committee on human experimentation with the Helsinki Declaration of 1975, as revised in 2008.

References

Boydell, J, Onwumere, J, Dutta, R, Bhavsar, V, Hill, N, Morgan, C, Dazzan, P, Morgan, K, Pararajan, M, Kuipers, E, Jones, P, Murray, R, Fearon, P (2014). Caregiving in first-episode psychosis: social characteristics associated with perceived ‘burden’ and associations with compulsory treatment. Early Intervention in Psychiatry 8, 122129.Google Scholar
Bowen, M (1966). The use of family theory in clinical practice. Comprehensive Psychiatry 7, 345374.Google Scholar
Braun, V, Clarke, V (2022). Conceptual and design thinking for thematic analysis. Qualitative Psychology 9, 326.Google Scholar
Castelein, S, Bruggeman, R, Davidson, L, Gaag, MVD (2015). Creating a supportive environment: peer support groups for psychotic disorders. Schizophrenia Bulletin 41, 12111213.Google Scholar
Chan, SK, Tse, S, Sit, HLT, Hui, CL, Lee, EH, Chang, WC, Chen, EY (2016). Web-based psychoeducation program for caregivers of first-episode of psychosis: an experience of Chinese population in Hong Kong. Frontiers in Psychology 07, 2006.Google Scholar
Claxton, M, Onwumere, J, Fornells-Ambrojo, M (2017). Do family interventions improve outcomes in early psychosis? A systematic review and meta-analysis. Frontiers in Psychology 8, 371.Google Scholar
Davidson, L, Chinman, M, Kloos, B, Weingarten, R, Stayne, D, Tebes, JK (1999). Peer support among individuals with severe mental illness: a review of the evidence. Clinical Psychology: Science and Practice 6, 165187.Google Scholar
Dijkstra, SA, Rijkeboer, J, Noordhof, A, Boyette, L, Berendsen, S, de Koning, M, Japien Bennen, R, Hofman, T, de Haan, L (2024). Making sense of recovery from first psychosis with antipsychotic medication: a qualitative phenomenological study. Schizophrenia Bulletin. Published online ahead of print. doi:10.1093/schbul/sbae104.Google Scholar
Dillinger, RL, Kersun, JM (2020). Caring for caregivers: understanding and meeting their needs in coping with first episode psychosis. Early Intervention in Psychiatry 14, 528534.Google Scholar
Gonzalez-Torres, MA, Oraa, R, Aristegui, M, Aranzazu, FR, Guimon, J (2007). Stigma and discrimination towards people with schizophrenia and their family members. Social, Psychiatry and Psychiatric Epidemiology 42, 1423.Google Scholar
Ibrahim, N, Ong, HC, Wahab, S, Che Din, N, Ahmad, M, Ami, N, Sin Siau, C, Mohamad, MS (2022). Perceived burden, psychological distress, and quality of life among family caregivers of individuals with schizophrenia. Journal of Multicultural Counselling and Development 50, 195207.Google Scholar
Hyland, P, Shevlin, M, Murphy, J, McBride, O, Fox, R, Bondjers, K, Karatzias, T, Bentall, RP, Martinez, A, Vallières, F (2021). A longitudinal assessment of depression and anxiety in the republic of Ireland before and during the COVID-19 pandemic. Psychiatry Research 300, 113905.Google Scholar
Lobban, F, Appelbe, D, Appleton, V, Billsborough, J, Fisher, NR, Foster, S, et al. (2020). IMPlementation of An online relatives’ toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use. BMC Health Services Research 20, 113.Google Scholar
Maheshwari, S, Manoha, S, Chandran, S, Rao, T (2020). Psycho-education in Schizophrenia. In Schizophrenia Treatment Outcomes: An Evidence Based Approach (ed. Shrivastava, A., De Sousa, A.), pp. 275284. Springer: Cham.Google Scholar
Malterud, K, Siersma, VD, Guassora, AD (2016). Sample size in qualitative interview studies: guided by information power. Qualitative Health Research 26, 17531760.Google Scholar
Marriott, C, Bernard, M, Larkin, M (2024). Exploring family experiences and relationship dynamics where one member experiences psychosis: “We’ve been on that journey together”. In Relationships and Mental Health: Relational Experience in Distress and Recovery (ed. Boden-Stuart, Z. and Larkin, M), pp. 137154. Springer International Publishing: Cham.Google Scholar
Mead, S, Hilton, D, Curtis, L (2001). Peer support: a theoretical perspective. Psychiatric Rehabilitation Journal 25, 134141.Google Scholar
Mui, EYW, Chan, SK, Chan, PY, Hui, CL, Chang, WC, Lee, EH, Chen, EY (2019). Systematic review (meta-aggregation) of qualitative studies on the experiences of family members caring for individuals with early psychosis. International Review of Psychiatry 31, 491509.Google Scholar
National Institute for Health and Care Excellence (2014). Psychosis and schizophrenia in adults: Prevention and management. (https://www.nice.org.uk/guidance/cg178/chapter/1-Recommendations). Accessed February 16, 2024.Google Scholar
O’Brien, BC, Harris, IB, Beckman, TJ, Reed, DA, Cook, DA (2014). Standards for reporting qualitative research: a synthesis of recommendations. Academic Medicine 89, 12451251.Google Scholar
O’Donoghue, B, O’Connor, K, Thompson, A, McGorry, P (2021). The need for early intervention for psychosis to persist throughout the COVID-19 pandemic and beyond. Irish Journal of Psychological Medicine 38, 214219.Google Scholar
O’Keeffe, D, Keogh, B, Higgins, A (2021). Meaning in life in long-term recovery in first-episode psychosis: an interpretative phenomenological analysis. Frontiers in Psychiatry 12, 676593.Google Scholar
O’Keeffe, D, Marshall, D, Wheeler, A, Allen, E, Ronan, H, Buckley, A, Counihan, E, Clarke, M (2023). Through COVID-19 and beyond: developing a multidisciplinary telehealth family intervention in first episode psychosis. Irish Journal of Psychological Medicine 40, 503507.Google Scholar
Rotondi, AJ, Anderson, CM, Haas, GL, Eack, SM, Spring, MB, Ganguli, R, Newhill, C, Rosenstock, J (2010). Web-based psychoeducational intervention for persons with schizophrenia and their supporters: one-year outcomes. Psychiatric Services 61, 10991105.Google Scholar
Rotondi, AJ, Haas, GL, Anderson, CM, Newhill, CE, Spring, MB, Ganguli, R, Gardner, W, Rosenstock, JB (2005). A clinical trial to test the feasibility of a telehealth psychoeducational intervention for persons with schizophrenia and their families: intervention and 3-month findings. Rehabilitation Psychology 50, 325336.Google Scholar
Rus-Calafell, M, Teismann, T, Kullmann, F, Alatas, D, Ballero-Reque, C, Holewa, J, Rüsberg, M, Brüne, M, Mercedes, P, Schneider, S (2024). Internet-based psychoeducation and support programme for relatives of young people with early psychosis: results of the first German-language intervention. Frontiers in Psychiatry 15, 1248526.Google Scholar
Sin, J, Gillard, S, Spain, D, Cornelius, V, Chen, T, Henderson, C (2017). Effectiveness of psychoeducational interventions for family carers of people with psychosis: a systematic review and meta-analysis. Clinical Psychology Review 56, 1324.Google Scholar
Sin, J, Henderson, C, Norman, I (2014). Usability of online psychoeducation for siblings of people with psychosis. International Journal of Technology Assessment in Health Care 30, 374380.Google Scholar
Wilhelm, K, Handley, T, McHugh, C, Lowenstein, D, Arrold, K (2022). The quality of internet websites for people experiencing psychosis: pilot expert assessment. JMIR Formative Research 6, e28135.Google Scholar
Figure 0

Table 1. Summary of interview topic guide

Figure 1

Figure 1. Overview of thematic structure.

Figure 2

Table 2. Sample demographics and relative’s psychiatric diagnoses

Supplementary material: File

Marshall et al. supplementary material

Marshall et al. supplementary material
Download Marshall et al. supplementary material(File)
File 15 KB