Current Research for Working with Families with Psychosis PDF

**Current Research for Working with Families with Psychosis:** *Domenico Giacco (Warwick)* **Class Prep:** **Intro to FI** **What is Family Intervention?** - Family intervention is a psychological intervention which is evidence-based for people experiencing psychosis and their families....

**Current Research for Working with Families with Psychosis:** *Domenico Giacco (Warwick)* **Class Prep:** **Intro to FI** **What is Family Intervention?** - Family intervention is a psychological intervention which is evidence-based for people experiencing psychosis and their families. - There are different types of family intervention but all work to include family members directly in the therapy - Clinicians, family members and service users have sessions together - Often in people's home **NICE Recommendations** - 1.3.7.2 Family interventions should: - Include the person with psychosis or schizophrenia if practical - Be carried out for between 3 months and 1 year - Include at least 10 planned sessions - Usually every-other week - Take account of the whole family's preference for either single-family intervention or multi-family group intervention - Take account of the relationship between the main carer and the person with psychosis or schizophrenia - Have a specific supportive, **educational** or treatment function and include negotiated problem-solving or crisis management **Who is a carer?** - Carers can be anyone who has regular close contact with adults with psychosis and schizophrenia, including advocates, friends or family members, although some family members may choose not to be carers \[Psychosis and schizophrenia in adults (NICE guideline CG178)\] - Family members include carers and family members who the person with psychosis or schizophrenia lives with or is in close contact with. \[Psychosis and schizophrenia in adults (NICE guideline CG178)\] **Carers as a resource** People with psychosis who have carers will usually have better outcomes and quality of life than those who don't - Accessing relevant services during the early phases of psychosis (Jansen et al., 2015; Morgan et al., 2006) - Improving treatment/medication adherence (Garcia et al., 2006) - Identifying early signs of relapse (Guest & Burns, 2001) - Reducing admission and relapse rates (Normam et al., 2015) - Gains from psychological therapy (Garety et al., 2008) - Improved reasoning skills and flexibility in thinking (Jolley et al., 2014) **Experience of caregiving in psychosis** - High levels of burden: \~80% (Magliano et al., 2003; Patel et al., 2004) - Feel their caring role has adverse effects on other parts of their life, e.g. emotional well-being, social functioning, financial burden and physical health - High levels of burnout (Onwumere et al., 2015; Angermeyer et al., 2006) - Exhaustion, feelings of negativity towards the person they're caring for - 30-40% report clinical levels of depression (Raune & Kuipers, 2004) - 30-40% report PTSD symptoms (Kingston et al., 2015; Loughland et al., 2009) - High levels of loss and grief (Patterson et al., 2005) - Victim of violence and aggression -- 52.9% (Onwumere et al., 2014) - Social isolation (Hayes et al., 2015) - Stigma and shame associated with mental health difficulties can reduce the social networks of carers (Magliano et al., 2005; Gutierrez-Maldonado, Caqueo-Urızar & Kavanagh, 2005) **Expressed Emotion (EE)** EE = a measure of the family environment *Considers the family interactions to be either positive or negative* - Being critical, hostile, overinvolved, may not be helpful ways of responding but these are very common ways of interacting - Being 'overinvolved' may be an adaptive response in early psychosis (Van Os et al., 2001) - High EE has been identified as common in caregiving relationships across multiple disorders (Wearden et al., 2000) - 'High EE carer' is a shorthand to describe carers in a high EE relationship, not a fixed quality of the carer **Understanding EE** - It was developed as a research measure - It is measured by scoring an interview (the CFI), with the carer talking about the client, on 5 different dimensions (criticism, hostility, emotional overinvolvement, warmth, positive remarks) - It is a measure of a particular relationship at a particular point in time - It can change - It is not situated 'in' a person but in the interaction between people **Impact of EE** - High EE has the potential to impact both client and carer - High EE is a predictor of outcomes in schizophrenia: - 21% relapse in those in low EE relationships - 50% for those in high EE relationships - High EE is strongly correlated to carer burden - Burden is related to poor carer outcomes including: - stress, distress, low self-esteem and less effective coping strategies. **The role of Beliefs** - Carer beliefs are linked to expressed emotion (hostility, criticalness, overinvolvement). - Cognitive theory suggests that it is not events in themselves which cause us distress, but the way we think about those events which leads us to feel distressed - ABC model -- Activating event, Belief, Consequence - Carers' appraisals of the situation and their perception of the resources they have to cope impact on carer burden and are independent of the severity of the experiences of the client (Scazufca & Kuipers, 1996) **Overinvolved Relationships** **Critical/Hostile Relationships** **Positive Relationships** **Beliefs about Psychosis** - Leventhal's Illness Perception Beliefs Model - Identity -- the symptoms, the name of the illness - Cause -- the aetiology of the illness - Cure/control -- the extent to which the illness can be cured or managed and what that might be like in real terms - Consequences -- the impact (e.g. personal, social, financial) on the individual experiencing psychosis, as well as the carer themselves - Timeline -- the perceived length of time the illness with continue - These dimensions will impact on the emotional and practical responses of carers and people experiencing psychosis **Cognitive Model of Caregiving *(Kuipers et al., 2010)*** **Summary & How this links to FI?** - Caring for someone who is experiencing psychosis can be a difficult and stressful experience for family members - Carers have may have different responses to caring due to factors such as expressed emotion and appraisal styles - Interventions can include helping carers to understand psychosis in relation to their loved one, acknowledge the carers own difficulties and provide them emotional support, work on the relationship between the family and the individual and think about the impact that psychosis has had on that - We include family members in our work because intervention has been shown to help the clients we work with and also the carers themselves - Additional - \[ \] Read: Understanding the Needs of Carers of People with Psychosis in Primary Care - \[ \] Read: Effectiveness of Family Intervention for Preventing Relapse in First-Episode Psychosis Until 24 Months of Follow-up: A Systematic Review with Meta-Analysis of Randomised Controlled Trials - \[ \] Cognitive Model of Caregiving in Psychosis **Notes: Family Interventions for Psychosis: the Models, the Evidence, the Implementation** **Family Interventions for Psychosis** - Models of family interventions ('how to work with families?') - Evidence on FI for psychosis ('Do family interventions work'? - FI implementation in mental health services ('How are family supported in practice and what are the barriers?' - FI in acute mental health care settings (general inpatient care, people treated under the Mental Health Act) **Models of Family Intervention** - Systemic-oriented family interventions - Psychoeducational approaches to family with the patient - Psychoeducational interventions to the family without the patient - Integrated interventions (separate interventions for patients and the whole family) (Models/Evidence, reference 'Rodolico et al., 2022, Lancet Psychiatry') **Systemic-Oriented Family Intervention** - The **whole family is the target of the intervention** - Family considered as a self-governing cybernetic system → family have their own dynamics and mechanisms that may be related to symptoms - Therapists focus on relationships between members; their interactions, and dynamics Requires lots of training, skill and understanding of cultural and psychological model **Psychoeducation** Talk to the family members of someone with psychosis and discuss (in user friendly language) what the disorder is, why they have to take medication & how it works. **With the Patient** - Team the family and patient how to communicate effectively → in some families communication can be disrupted - particularly when there's lots of stress - Joint crisis care planning - what are the early signs of crisis → *when people relapse, they present at the beginning with signs and symptoms (e.g. disturbed sleep, changes to feeling / eating)* - Relapse prevention - pick up on these signs for patient and families - Plan in place if these signs appear - Focus on Emotional Climate → researches found (50s/60s) in families with more Expressed Emotion (e.g. critical/over emotionally involved) - can impact the risk of relapse **W/out the Patient - Relatives' Psychoeducation** - Focused on information provision and family emotional climate - Can be done individually or in family groups - Different groups of carers or families → peer support and exchange - Carer groups → those who provide significant emotional and physical support - Very effective when the patient refuses to engage in support/intervention **Integrated Intervention** **Separate Psychoeducation Interventions** - Provided separately to patients and relatives **FPsy + patient behavioural or skills training** - FPsy to all family training only to patients **Community-based care intervention** - Family support provided as part of a wider community-based provision (e.g. Assertive Outreach - not done much anymore) → EIS use assertive outreach methods - NICE recommends offering everyone in EIS Family Intervention **The Evidence** *Rodolico et al., 2022 - Meta-Analysis* - Almost all interventions models were associated with a lower probability of 12- month relapse than TAU - Exception: brief (less than two sessions) psychoeducation and interventions only focused on crisis planning - evidence is still unclear regarding its effectiveness → suggests the need for more sessions of family involvement - Relapse rate: Family psychoeducation alone (10%), FPsy + behav/skills training and mutual support (17%) and systemic oriented (16%) - Relapse rate in TAU was 37% **Reflecting on the Evidence** FI work and reduce relapse. Everything is effective but needs to be done for more than a couple of sessions. FI effective because - family can understand more about diagnosis, medication (adherence & potential side-effects) and support & encouragement to seek help / better understanding for clinician regarding the patients environment. Crisis plan-focused and brief interventions fail to show effectiveness → too brief to get to know the families & dynamics and engage effectively → intervention may not be implemented properly **Implementation** - Given the effectiveness of family interventions, they should be implemented in practice - (see *The National Institute for Care and Clinical Excellence, UK, and the Royal Australian and New Zealand College of Psychiatrists*) - However, their implementation is still limited **Systematic Review** - Question: How is the involvement of families is implemented in the treatment of patients with psychosis? - Methods: systematic review including both qualitative and quantitative studies. - Analysis method: Thematic analysis of data from papers Implementation reference is '*Eassom, Giacco et al., 2014, BMJ Open*' **Identified Evidence** - Over half of the studies were based on UK findings - Approaches were FPsy primarily, but also Open Dialogue, Systemic Psychotherapy and purely Behavioural Therapy - Vast majority were cross-sectional and staff-focused studies (e.g. Open Dialogue) - More attention to barriers than to facilitators **Themes** ***Red = Don't Work*** ***Green = Make it Work*** 1. **Training Needs** - Get training but move out of service or don't get the right supervision → doesn't work for FI 2. **System-wide Approaches and Attitudes** - Consider the organisation culture → what their priority is - E.g. focus on medication may result in FI being a lower priority - Even if staff are trained for FI - if colleagues don't agree with it, may be less inclined to refer into it or agree with its outcomes - Should be a shared focus in the team for FI to be implemented effectively 3. **Reservations About Involving Families** 4. **Problems with Engaging Families** - Families still need to be engaged but consider different ways to engage. - Critical period of engagement with families → engaged early on = better outcome - Important to have a shared message across the service about Family Involvement 1. **Complex Needs** - Can be difficult if there are complex relationships within the family - Important to be willing to share power/control with family regarding intervention & crisis-planning (e.g. what the patient wants to happen when they're unwell) 2. **Working Relationships** - Active use of effective communication skills → also possible to be trained - FI = 3 way meeting → need to learn to navigate this dynamic - Continuity of care is important → having the same person deliver the intervention *(E.g. having a point-of-contact for the families)* 3. **Individualisation** - Listen, be curious of individual and culture - Relinquish control a little bit - Also consider delivery → e.g. if families are busy --- meeting outside of working hours, via video calls etc. - Helps with engagement with intervention → assist with barriers to treatment **Reflection** - Is there something that research has not captured so far and would be worth investigating? - What do you think the implications for practice are? **Inpatient Care** - Background: service user and carer voices are often not heard in implementation research on family involvement - Question: How can we improve implementation of family involvement in inpatient care? - Focus groups with patients, carers, staff *Giacco et al., 2017* **Implementation in Inpatient Settings** **What should carer involvement entail:** - The right time for involvement - Providing carers with information - Involving carers in all aspects of care planning and discharge - Adopting a supportive approach towards carers - Valuing the personal knowledge of cares on patient's condition **Practical Challenges of Carer Involvement:** - Identify carers → information not regularly obtained (particularly in crisis) - Problems in assessing and obtaining patients' consent/capacity - Complexities of information sharing - Difficulties with engaging carers - Systemic and organisational constraints *Kaselyonite et al., 2019 - Pathway of Family Engagement* **Obtaining consent from the newly admitted patient for carer involvement** **Organising a meeting/discussion with the patient, their carer and clinician within 7 days of admission** **Topics for discussion in the meeting:** - **Reason for admission** - **Information provision - *hospital processes, legal rights, visitation policy etc.*** - **Ways of working together in care and discharge planning** **Family Support - Involuntary Care** **Admittance under the MHA:** *Previous research -*\* family/friends of patients carers felt isolated and unsupported by services. **Mental Health Act (MHA) review -** provide support to informal carers (family and friends) of people who are detained *Jankovic et al., 2011* **Information about mental health laws:** *"I would have loved to be able to have somebody else jus to **help me understand** all the legality of it, what my rights were"* **Continuous support:** *"A **confidential adviser** or a **buddy assistant** to talk to over the phone or in a private safe room, **one-to-one**, not in coffee mornings but like **regular get-togethers** or session"* **Specificity of peer support:** *"a professional's been education to know those things but a **carer** would have **gone through it themselves personally.**...sometimes **real-life events** give you **better knowledge.**"* **Gaps** - No interventions available focused on one-to-one and situation-specific support for carers (particularly when they have a relative in hospital under the MHA) - **Why one-to-one?** - Issues are sensitive, need for information is specific to MHA **Evidence-based solution** - Peer support programme, tested successfully in Germany, adapted and tested for England - OPAL project **Family Involvement in 'service transitions' - inpatient & outpatient care** **Interventions** 1. Psycho-education in hospital → *works a little* 2. Discharge planning → *doesn't work well on its own* 3. Psychoeducation/discharge planning/community follow-up → **most effective** *Petkari et al., 2020* **Evidence** Interventions including carers that take place both in the **hospital** and the **community** have the clearest evidence for benefit on **relapse reduction** **Implications** - Comprehensive/sustained interventions have the best evidence - Rational for implementation/resourcing? **A Positive Example: Early Intervention Teams** 1. Family intervention is offered to all eligible patients 2. Explicit standard of care, monitored regularly 3. All staff trained 4. Meta-analytic synthesis: FPsy improves service user functioning and reduces relapse *Claxton et al., 2017; Singh et al., 2021* **Final Reflection** - FI are effective in reducing relapse. - There are implementation challenges. - All staff can be trained to FPsy (e.g. in EIT); more intensive approaches (systemic family therapy, specific forms of psychoeducation / behavioural skills training) need specialist training. - At present, whole team approach and continuity of care seem to be key for both effectiveness and implementation. - Peer support could be one of the possible key future ingredients of FI.