Introduction
Context
The COVID-19 outbreak was sudden and unexpected. The first known case in the Republic of Ireland was identified in Dublin on the 29th February 2020 and thereafter, as in many countries around the world, the infection rate accelerated rapidly. On March 11th 2020, the World Health Organisation declared a pandemic, warning that countries were not doing enough to stop contagion. Subsequently, the Republic of Ireland entered its first lockdown with the closure of all schools, colleges and other public facilities; the application of restrictions on social gatherings and closure of non-essential businesses; and the request for the general public to work from home, where possible, and for vulnerable citizens to ‘cocoon’ (Kennelly et al. Reference Kennelly, O’Callaghan, Coughlan, Cullinan, Doherty, Glynn, Moloney and Queally2020). Similar steps were taken across the globe. Despite substantial progress in safe and efficacious vaccine development and rollout, the long-term course of the pandemic remains uncertain (Skegg et al. Reference Skegg, Gluckman, Boulton, Hackmann, Karim, Piot and Woopen2021). Crucially, the net effect of COVID-19 on health systems internationally has been a radical transformation in how healthcare is provided (Mann et al. Reference Mann, Chen, Chunara, Testa and Nov2020) – the pace of change outstripping anything seen previously.
While justification for Early Intervention in Psychosis (EIP) services is multifarious (Correll et al. Reference Correll, Galling, Pawar, Krivko, Bonetto and Ruggeri2018; Lieberman et al. Reference Lieberman, Small and Girgis2019; Behan et al. Reference Behan, Kennelly, Roche, Renwick, Masterson, Lyne, O’Donoghue, Waddington, McDonough, McCrone and Clarke2020), the need to ensure acceptable, timely and effective EIP service delivery has taken on renewed importance recently as the pandemic presents unique challenges to the provision of high quality, safe EIP services (O’Donoghue et al. Reference O’Donoghue, O’Connor, Thompson and McGorry2020). Family members of people experiencing a first episode psychosis (FEP) are likely to have more need for support at this time, potentially experiencing: enhanced isolation; increased contact with their family member with psychosis in a restricted environment; deterioration of family relationships; and less access to in-person clinical team input (with carer burden amplified as a result). Along with the general population, such families may also be unable to enact many previously effective coping strategies (due to public health guidance) and their resilience is being challenged as a consequence.
Psychoeducational interventions for families of individuals experiencing psychosis have been shown to decrease global morbidities, perceived carer burden, negative caregiving experiences and expressed emotion within the family unit (Sin et al. Reference Sin, Gillard, Spain, Cornelius, Chen and Henderson2017). There is also evidence that – more broadly defined family intervention (incorporating psychoeducation, problem-solving, emotional processing, stress management and communication components) – reduces family criticism of service users and frequency of conflict communication in early psychosis (Claxton et al. Reference Claxton, Onwumere and Fornells-Ambrojo2017).
Rationale for intervention development
From March 2020, with in-person family groups no longer viable in the Republic of Ireland, service delivery to families in the Dublin and East Treatment and Early Care Team (DETECT) EIP service was altered on the basis of public/occupational health advice, evolving clinical judgment and service capacity. Other considerations for service adaptation included limited resources, long pre-pandemic waiting lists and geographical factors posing barriers to care access. Due to the necessity to ensure EIP continues despite COVID-19, 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).
Aim
This article aims to: describe PERCEPTION; offer reflections on our experience of delivering it; make recommendations for future research in this area; and synthesise key learning to assist the integration of similar interventions in other EIP services during, in the aftermath of, and beyond the COVID-19 pandemic.
Setting
DETECT is Ireland’s first EIP service. DETECT has responsibility for three geographically defined catchment areas, in South Dublin and Wicklow (Republic of Ireland), with a population of 390,000. DETECT conducts a rapid FEP assessment service and offers individually tailored interventions to people experiencing a FEP and their families. These include pharmacotherapies, physical health and lifestyle interventions, psychological interventions, family interventions and support, and vocational, educational, and psychosocial recovery interventions.
Article overview
A descriptive account will now be presented of the development and implementation of PERCEPTION, with reflections from the clinicians involved, on supporting families using a multidisciplinary, blended, telehealth approach.
PERCEPTION
Intervention development
In line with evidence of the advantages of multidisciplinary collaboration (e.g. an enhanced skill range to meet complex needs) (Mental Health Commission, 2006) and blended interventions (e.g. rapport facilitation) (Davies et al. Reference Davies, Shepherd, Beatty, Clark, Butow and Shaw2020), we developed PERCEPTION to offer psychoeducation and peer support for families attending the DETECT service. This intervention aimed to educate families on psychosis, its treatment and the factors that influence recovery; provide guidance on communicating with a family member experiencing psychosis; and offer a safe space for families to share their lived experience and learn from each other.
PERCEPTION was delivered by social work, psychology and psychiatry predominantly over the online platform Zoom. Social work assessed clinical need, led intervention coordination and delivery, and established a safe, non-judgmental, online environment; psychology revised the intervention content for the online format and provided technical and mental health support during the intervention; and psychiatry offered medical guidance at a time when access to health services was greatly restricted.
Intervention structure
Prior to commencement, families were met in-person (adhering to public health guidance) by social work in DETECT. At this meeting, social work appraised family suitability, readiness, and motivation and provided initial informational, instrumental and emotional support. We deemed this initial in-person meeting necessary due to the isolation communicated by many families via telephone during the pandemic. We prioritised this meeting to conduct a comprehensive social work assessment of family needs and establish a therapeutic alliance to foster ‘buy-in’ for the online aspect of the intervention.
All PERCEPTION modules were co-facilitated by the members of the multidisciplinary team. Modules lasted 90 minutes and were delivered once per week over a 4-week period. 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 psychoeducation curriculum comprised four online modules, presented using Microsoft PowerPoint, in consideration of the impact of online delivery on attention spans (Rasheed et al. Reference Rasheed, Kamsin and Abdullah2020). Intervention design was underpinned by psychoeducation and peer support theory (Castelein et al. Reference Castelein, Bruggeman, Davidson and Gaag2015; Maheshwari et al. Reference Maheshwari, Manohar, Chandran, Rao, Shrivastava and De Sousa2020). An outline of the topics covered in PERCEPTION’s psychoeducation curriculum is displayed in Table 1.
Table 1. PERCEPTION’s psychoeducation curriculum
a Legalisation underpinning psychiatric hospitalisation in the Republic of Ireland.
b A recovery framework that can assist a person to take ownership over their wellbeing and integrate self-management into daily life.
The online ‘questions and answers’ session afforded families an opportunity to ask the multidisciplinary team questions related to the knowledge shared in each module. The online mutual peer support discussion session – founded on the principles of respect, shared responsibility and collective agreement of what is helpful (Mead et al. Reference Mead, Hilton and Curtis2001) – aimed to offer families a safe space to voluntarily come together to help each other address common problems and shared concerns (Davidson et al. Reference Davidson, Chinman, Kloos, Weingarten, Stayner and Tebes1999). Families used this time to: articulate and normalise their lived experience (and for some – the trauma) of psychosis; develop new coping mechanisms for the family unit; and discuss ways of supporting their loved one.
In consideration of the privacy and security implications of telehealth (see Hall & McGraw, Reference Hall and McGraw2014 for a review) we implemented procedures to mitigate risk. We designed a consent form that ensured that all families engaged in the intervention from a safe, secure physical setting, free from interruptions. Participation required keeping video on throughout, using audio muting when appropriate, treating other families with respect, and maintaining confidentiality during, and after, the intervention. Limits to confidentiality were also made clear (e.g. the mandatory reporting of child protection concerns). Families were informed that Zoom operates using end-to-end encryption, that their use of Zoom requires acceptance of its privacy policy (https://zoom.us/privacy), but that no information shared online would be stored by the team. A safety protocol was put in place prior to commencement. Each service user’s FEP assessment was taken into consideration when determining the risk posed to families in taking part in the intervention. If risk to the wellbeing of service users, family members, or clinicians was identified, participants (and their loved one) were to be phoned by a team member to assess this risk. To ensure protection from harm, the relevant clinical team was to be informed of identified risk and, if necessary, emergency or police services were to be contacted in these circumstances. If participants communicated distress, we sought to validate their difficult position, give them the option to stop taking part, and offer one-on-one phone and email support.
Engagement, support and follow-up
Two groups were run, in parallel, on different days over 4 weeks. Of the families invited, 60.71% of these commenced PERCEPTION. Of those families who began, 88.24% completed all sessions. We consider this a high degree of engagement in light of family engagement levels reported in EIP services elsewhere (Iyer et al. Reference Iyer, Malla, Taksal, Maraj, Mohan, Ramachandran, Margolese, Schmitz, Ridha and Rangaswamy2020). We provided a ‘pre-Zoom’ preparatory session to each family to identify and address potential technology glitches, usability issues, or problematic internet connections. Phone and email technical support was provided, if needed, by assistant psychologists, while groups were running.
One-month post-intervention, we followed up with families via Zoom to link in with and offer additional support to, the family unit. The 1-hour follow-up provided an update on the wellbeing of families and whether this had improved or worsened since intervention completion. In cases where the service user’s mental health or the family dynamic had deteriorated, additional guidance and supports were provided. For example, families could be offered further follow-up via Zoom or telephone or service users could be referred to DETECT’s clinical psychologist for individual therapy.
Discussion
Reflections on intervention delivery
We experienced telehealth, in this context, as patient-focused, safe and efficient. This is in line with best available evidence supporting the feasible implementation and acceptability of telehealth for mental health service users (Santesteban-Echarri et al. Reference Santesteban-Echarri, Piskulic, Nyman and Addington2020), research identifying clinicians’ largely positive attitudes towards telehealth (Connolly et al. Reference Connolly, Miller, Lindsay and Bauer2020) and case examples describing telehealth’s benefits in psychosis management (Donahue et al. Reference Donahue, Rodriguez and Shore2021). A multidisciplinary team was necessary for delivery of condensed, concise, dynamic, educational presentations and the provision of vital support to families. In intervention delivery, we needed to be flexible and agile to engage in real-time team working and problem solving.
We believe certain features of PERCEPTION augmented accessibility, improved families’ engagement in care, and contributed to our positive experience of providing it. We hypothesise that the blended approach adopted fostered trust, and consequently engagement, by enabling us to get to know families initially through in-person interaction (Farrelly et al. Reference Farrelly, Lester, Rose, Birchwood, Marshall, Waheed, Henderson, Szmukler and Thornicroft2015). Families appeared happy to engage with this type of intervention as it could offer a safe and secure environment, enable participation from any location with an internet connection, and reduce carer burden (through enhancing ease of access to services – from home). While the experience of clinicians feeling ‘uncomfortable’ in situations involving high expressed emotion, complex countertransference reactions, and high-risk disclosure online have been previously reported with telehealth (Richardson et al. Reference Richardson, Reid and Dziurawiec2015), we perceived the online environment not to be conducive to such occurrences. We posit that this may be linked to how communication between clinicians and families occurred predominantly through group interaction via video or instant messaging. The emotional content of families’ communication may have been curtailed as a consequence.
In line with conclusions of a recent literature review, we perceived telehealth to be a favourable environment in which to implement the principles of trauma informed care (Gerber et al. Reference Gerber, Elisseou, Sager and Keith2020). For example, using headsets promoted confidentiality and clinicians ensuring participants could see their body language promoted trustworthiness. Though PERCEPTION required additional technology and human resources (e.g. laptops for team members, a large monitor to enable an assessment of participant wellbeing throughout and extra clinicians to provide technical support to families).
It was our experience that the online environment was conducive to the type of peer support offered by the intervention. The vast majority of families freely shared aspects of their lived experience without being prompted by the team. However perhaps communication, prior to intervention commencement, of the relevance of all family experiences to learning about recovery in psychosis might have improved engagement. This could offset the risk of participants questioning the value of learning through peer support when circumstances differ between families. However, we believe that telehealth afforded families ample opportunity to interact, perhaps even more so than in-person interventions, where more extroverted families might dominate.
We encountered multiple barriers to intervention implementation, including the challenges of appraising distress online (due to the absence of in-person cues) and supporting participants to fully comprehend education material in a virtual environment. In order to promote a motivating group dynamic and to maintain momentum, we encouraged frequent use of the Zoom ‘chat feature’ during Microsoft PowerPoint presentations, role-played communication styles and posed questions to families to actively stimulate conversation, while sticking to strict timelines.
Recommendations and future directions
As PERCEPTION was developed and delivered out of necessity, rather than as a planned study, a scientific evaluation is now imperative. To our knowledge, evaluations of four telehealth psychoeducational interventions (augmented with peer support) for family members in psychosis have been published. The data available indicate such interventions are acceptable, feasible, and efficacious in enhancing knowledge about prognosis, reducing stress, and increasing perceived social support (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, Reference Rotondi, Anderson, Haas, Eack, Spring, Ganguli, Newhill and Rosenstock2010; Sin et al. Reference Sin, Henderson and Norman2014), but require adequate digital confidence, competence, and governance (Lobban et al. Reference Lobban, Appelbe, Appleton, Billsborough, Fisher and Foster2020). While our clinical experience corresponds with these data, there is currently an urgent need not just to replicate these studies but also to broaden evaluation foci. These include more rigorous quantitative appraisals of efficacy, that afford enhanced control of bias, as well as in-depth qualitative examinations, exploring: intervention acceptability; why certain aspects of the intervention were, or were not, helpful to families; the perceived value, benefits, harms and unintended consequences of the intervention; and families’ recommendations for intervention improvement. For post-pandemic service planning, identifying the preferences for clinicians providing, and family members receiving, online versus in-person family interventions in FEP would be helpful. There is also a need for evidence on the extent of family member exclusion from telehealth due to sensory or cognitive impairment, poverty and the lack of digital literacy and how such obstacles can be surmounted.
Until such data are published, we recommend that post-pandemic – in line with the accessibility, choice and autonomy objectives of recovery oriented services (Davidson et al. Reference Davidson, Rowe, Tondora, O’Connell and Lawless2008) – the option of receiving in-person or online interventions is offered to families. As a policy recommendation, we suggest that EIP services currently, and considering, utilising telehealth to provide services should consult guidelines for its use, identify the privacy, security, and administrative measures that should be taken, and assess the impact of their implementation (Watzlaf et al. Reference Watzlaf, Zhou, DeAlmeida and Hartman2017). Also, to optimise platform functionality and improve the support provided to families, training for clinicians in both telehealth and the use of newly developed online platforms is required.
Conclusion
In light of the vital role family members play in aiding recovery in psychosis (Wood & Alsawy, Reference Wood and Alsawy2018), the influence of family dynamics on recovery outcome (Hinojosa-Marqués et al. Reference Hinojosa-Marqués, Domínguez-Martínez, Kwapil and Barrantes-Vidal2020) and the impact of psychosis on the mental health of the family unit (Jansen et al. Reference Jansen, Gleeson and Cotton2015), it is crucial that EIP for families is responsive and innovative, now and into the future, to prevent unnecessary human suffering through the COVID-19 pandemic and beyond. Adopting a multidisciplinary, blended, telehealth approach can assist service providers to attain balance between protecting public health and offering a meaningful, therapeutic intervention to support families in the current epoch.
Acknowledgements
The authors would like to acknowledge the families who completed the intervention and the Saint John of God Community Services Clg for providing the technology necessary to deliver it.
Conflict of interest
The authors have no conflicts of interest to disclose.
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. The authors assert that ethical approval for publication of this Perspective Article was not required by their local Ethics Committee.
Financial support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
