Grief, Hope, Mental Health, Mental Health Nursing, Mental Health Treatment, Recovery, Self esteem

Working with Families and Informal Carers

This blog post is related to another paper I wrote as part of my mental health nursing degree submissions. It was a ‘choice’ module and I chose it because, well, I feel very very strongly about not only patient involvement but the involvement of family and/or informal carers who often get left out. I should add now that I’m only talking about involvement that is healthy and wanted…

My interest in this aspect of mental health care stems from being an invisible carer. A child with an absent mother and then as an adult also. Background: I would visit my mum aged 5 every 3 weeks for the weekend and witnessed a lot of her pain. She would need to lie down a lot because she was tired. She acted strangely. She could do things with me sometimes and others not at all. It was silent actually. I didn’t understand why but I knew it was related to this outwardly ‘weird’ thing I noticed she ‘had’ that nobody talked about let alone explained.

As an adult, the only contact I had with her team was if I happened to be at her house when a random CPN turned up. She had no interest in me. Or the time I found out she was secretly in hospital. It’s not acceptable.

So…. I want others to think about what we mean by carers. Carers are not just those that live with a person affected by mental health problems or e.g parents but children (living with or not – as above), siblings, friends and even Joe Bloggs in the shop. Joe Bloggs may be the only person in their life. I want others to actually recognise carers. Ask questions. After all biopsychoSOCIAL.

I want then, carers to have support. Education. Involvement. A care plan of their own if wanted.

You get my drift I’m sure.

Here’s my paper:

A Critical Analysis of the Importance of Working Collaboratively with Families and Informal Carers.

This review will address the importance of working with families/informal carers, initially providing a background of serious mental illness (SMI) and carer support. It will then focus on the impact on carers when a loved one develops SMI, followed by the theory and evidence base for working with carers, the role of psychoeducation and, finally, my reflection/plan for supporting carers, and appropriateness of psychoeducation in practice.

For consistency/ease of reading, families/informal carers will be referred to as carers, unless specific studies refer to families; the term patient/loved one for patients with SMI.

Background:

SMI includes the schizophrenia spectrum, anxiety/affective disorders, eating disorders, and personality disorders (American Psychiatric Association, 2013, cited in Corrigan, 2014). Families/carers are those providing unpaid care/support, inside or outside home, to someone who cannot manage otherwise because of Illness (physical/mental disability/addiction) (Carers Trust UK, 2012; Gamble and Brennan, 2006). Carers can also be children/young people/friends or community persons.

Seven million people live with SMI at any one time (Pinfold and Corry, 2003), including 7,500 young people suffering psychosis annually, in the UK (Foster, 2011). Approximately 1.5 million care for them (Rapaport et al, 2006). Carers save the public £1.24 billion annually (Yesufu-Udechuku et al, 2015) looking after relatives with Schizophrenia, but often have no opportunity, although legally entitled, for an annual carers assessment (Department of Health, 1995 cited in Askey et al, 2009; Rapaport et al, 2006), to review their independent needs – Physical/carer role/mental health (Department of Health, 1999 cited in Askey et al, 2009). Even if they do, needs are not always provided (Pinfold and Corry, 2003; The Schizophrenia Commission, 2012). Rethink (2003 cited in Rapaport et al, 2006) found 1 in 5 carers had an assessment of which just 28% had a carers plan. Many are unaware of their rights (Carers UK, 2003 cited in Askey et al, 2009). Also carers, despite patient health benefits, are sometimes excluded from care planning and family intervention for psychosis/schizophrenia (Kuipers, 2010 cited in Cree et al, 2015; Heru, 2006 cited in Cree et al, 2015; The Schizophrenia Commission, 2012; National Institute for Health and Clinical Excellence, 2014; 2013; The Schizophrenia Commission, 2012). Carers Trust UK (2013) suggests a range of carer support services be accessible as one of their six key standards for mental health service improvement.

Carer impact when a loved one develops a SMI:

The following patient statement illustrates what carers may experience (The Schizophrenia Commission, 2012, p4):

“You discover that you cannot trust your senses, your mind plays tricks on you, and your family or friends seem part of a conspiracy to harm you”.

Although caring can be strongly positive (Nolam and Lundh, 1999 cited in Yesufu-Udechuku et al, 2015), a loved one becoming unwell can be traumatising. There is often nonfinite grief/loss with no death to mourn and uncertainty of the future (Bruce and Schultz, 1998). Adjustment to loss may lead to abandoning future hope (MacGregor, 1994 cited in Richardson et al, 2013). Considering illness can fluctuate/be unpredictable, grief may continue (McElroy, 1987 cited in Richardson et al, 2011). Others, may state it could be worse – this may stop carers offloading, leading to guilt/apologies if they do (Bruce and Schultz, 1998). Anger towards their loved one, who is seen as a victim, can create guilt/shame because of these emotions (Jones, 2004 cited in Richardson et al, 2011). For siblings, anger can be related to “survivor guilt” (Millier, 1996 cited in Richardson et al, 2011). Relationships may be strained (Rose, 1998b cited in Rose et al, 2006).

Mental illness stigma often has profound effects on carers/patients sometimes preventing seeking, or staying, in treatment. Eighty-seven percent have experienced stigma (The Schizophrenia Commission, 2012). Families may believe they caused illness through poor parenting or genes; outsiders can reinforce this, even blaming for slow recovery (Corrigan et al, 2014). Siblings/spouses, who choose to live with them, are sometimes viewed with greater responsibility, taking blame when treatment is not followed, and subsequently relapses (Phelan et al, 1998 cited in Corrigan et al, 2006). Others may discriminate against carers based on their connection with the patient through ‘Courtesy Stigma’ (Goffman, 1993 cited in Corrigan et al, 2014) and/or suffer ‘Vicarious Stigma’ which explains subjective powerlessness/grief witnessing patient discrimination (Corrigan and Miller, 2004 cited in Corrigan et al, 2014). This sometimes leads carers to keep illness secret (The Schizophrenia Commission, 2012), compounding the isolation/tensions, undermining patients coping capabilities (Corrigan et al, 2014; The Schizophrenia Commission, 2012). They may fail to seek help from professionals due to previous bad experience with services (Lefley, 1989 cited in Corrigan et al, 2014), leading to further burden.

Understandably, it is unsurprising carers health can be severely affected through stress. They are more at risk of developing mental illness than the general population, impacting how well they can care, and quality of life (Shah, Wadoo and Latoo, 2010). Carer illness often results from being overwhelmed/exhausted (Smith, Gregory and Higgs, 2011). These are all experiences of ‘Carer Burden’, a term described by Platt (1985 cited in Askey et al, 2009) as “the presence of problems, difficulties or negative events that influence the life of a family member when taking care of the client”. Burdens are ‘objective’ (health/leisure/financial) and ‘subjective’ (embarrassment/loss/anxiety) (Kavanagh, 1992 cited in Askey et al, 2009) having a larger impact depending on carers own reactions/situation/illness severity, (Barrowclough et al, 1994 cited in Askey et al, 2009) and whether support (emotional/financial), information, skills and space is provided (Schneider et al, 1999 cited in Askey et al, 2009).

As stated, carers often lack support from services and may have to battle for basic services (The Schizophrenia Commission, 2012). This is nonsensical considering the crucial role they play (Yesufu-Udechuku, 2015). Such struggles has had, although rare, catastrophic effects on families/patients regarding risk to others or themselves, from inadequate support/community funding. Unfortunately media reporting of serious incidences increases stigma, but, conversely, highlights important issues of support levels/poor communication/staff failures, impacting illness/ceasing medication (BBC News, 1998).

Another large impact is the complex issue of sharing information creating tensions between all. Carers report they are excluded/unappreciated by professionals, thus reinforcing self-blame (Cree et al, 2015)/increasing feelings of loss/grief and isolation (Allison et al, 2004). Carers report they are viewed negatively/not taken seriously, creating disappointment. Equally carers may hold back sharing, fearing professionals will break confidentiality (Cree et al, 2015).

Sharing is essential to all given the impact of not doing so, personally/practically and financially. Given SMI can lead to crisis, carers should have information needed (Allison et al, 2004). For example, information was found unshared with parents of young people who later completed suicide (Stanley and Manthorpe, 2001 cited in Rapaport et al, 2006).

Lack of sharing is often due to confidentiality/ethical perceptions. Professionals are bound by legal/ethical frameworks and professional codes of conduct (Rapaport et al, 2006). The latter, criticised by Beauchamp and Childress (1994 cited in Rapaport et al, 2006) for “oversimplifying moral requirements”. Professionals understandably fear personal disciplinary/legal action through breaching confidentiality. Patient consent is required (Allison et al, 2004) although mental capacity to provide consent is an issue as patients usually consent when having capacity, creating frustration to carers (Bellhouse et al, 2003 a,b cited in Rapaport et al, 2006).

Breach of trust is an issue for professionals/carers providing reciprocal information (Backler, 2001 cited in Rapaport et al, 2006 and Allison et al, 2004) particularly when patients lack capacity. However, professionals could, and should, provide carers with general information/signposting and listening (Bogart and Soloman, 1999 cited in Improving MI Practices, 2016).

Theory/Evidence Base for Working with Carers:

Much research exists around causes and/or exacerbation of SMI and how this understanding can benefit carers supporting patients, as well personally. Initially focussed on schizophrenia this formed the theories and evidence base for working with carers/patients, intended to improve outcomes. These include carer burden/impact, as discussed, stress vulnerability and expressed emotion (EE).

‘Stress vulnerability’ first proposed by Zubin and Spring (1977) explains illness as an interrelation between stress and vulnerability. Vulnerabilities are thought to be influenced by a number of factors including biological aspects such as inherited genes/brain processes and other aspects such as personality/life events/environmental factors (Gamble and Brennan, 2006). Stresses can be positive/negative and are ‘ambient’ (daily stressors everyone experiences), or high stress ‘life events’. Individuals react to stress uniquely and not everyone becomes ill. This model suggests stress levels combining vulnerabilities causes illness, especially when increased. Although aspects are unchangeable, families/patients can mitigate some through coping skills/effective medication/reducing substances and environmental factors, for example (The Gloucestershire Hearing Voices and Recovery Groups, 2011).

Expressed Emotion (EE), originally termed ‘Emotional Involvement’ (Smith, Gregory and Higgs, 2011) was initially proposed in the 1950’s by Anthropologist, George Brown (1986) when researching patients with schizophrenia leaving asylums for community care. He found some did well but others returned with florid symptoms. The latter relapsed after returning to a parent or wife than those with siblings/new lodgings. He hypothesised patients were susceptible to heightened emotions. Brown could predict those returning to hospital by interviewing one family member, noting facial and verbal emotion. The key to relapse, he hypothesized, was criticising their relative, with an emotional tone; whereas high dissatisfaction and no emotion was not correlated to relapse.

Later research by Brown and colleagues, found less than 35 hour carer contact in high EE households decreased relapse likelihood (Smith, Gregory and Higgs, 2011). Interestingly, unemployed patients had increased relapse likelihood, increasing further when mothers worked and patients were home alone (Brown, 1986); Increased or decreased stimulation levels, affects social functioning negatively (Wing and Brown, 1970 cited in Smith, Gregory and Higgs, 2011).

The terms high EE (HEE) and low EE (LEE) were coined by Brown, Birley and Wing (1972 cited in Smith, Gregory and Higgs, 2011) and an assessment tool (Camberwell Family Interview – CFI), rated as the best quality (Humbeeck et al, 2002) was developed by Leff et al (1982; 1985 cited in Smith, Gregory and Higgs, 2011) to rate if a household displays HEE. If they do not, the family shows LEE (Smith, Gregory and Higgs, 2011). According to Kavanagh (1992 cited in Askey et al, 2009) increased carer burden equals increased HEE.

Leff & Vaughn (1985 cited in King et al, 2003) states LEE families viewed loved ones illness legitimate, demonstrating more understanding towards their problems. Indeed, such families as a result are less likely to control behaviours viewed as not under their loved ones control. In HEE families attitudes tend to be critical/emotionally overinvolved (EOI) and hostile (King et al, 2003). As well as being implicated in relapse in schizophrenia, HEE has been shown to affect the health/outcome of other mental illnesses (Butzlaff and Hooley, 1998 cited in Barrowclough and Hooley, 2003; mentalhealthcare, 2014), although there is some debate to whether HEE is an understandable reaction to the stress of living with relatives illness/symptoms and the symptoms themselves are indicative of a relapse independently rather than causation (Brown et al, 1972 cited in King et al, 2003; Hooley et al, 1995 cited in King et al, 2003; Smith, Gregory and Higgs, 2011).

In the late 1970’s, the above research led to the evidence base for family work in schizophrenia, then other mental illnesses, aiming to reduce relapse risk and provide family support (mentalhealthcare, 2014). Research indicates medication, combining family work, is most effective for psychosis (Pitschel-Walz et al, 2001 cited in French, 2010), particularly when accessed early thus families feel better enabled to care (Reed and Stevens, 2007 cited in French, 2010). Driving this forward, in 2004, the early psychosis declaration (Foster, 2011) was released detailing a five year plan to: Improve access, engagement and treatment/raise community awareness/ promote recovery/increase family engagement and support and practitioner support.

With early intervention, full recovery is possible or at least decreases future impairment; with relapse rates minimised by over 50% (World Health Organization and International Early Psychosis Association, 2004; Royal College of Psychiatrists, 2012). Much of family work is educational (Smith, Gregory and Higgs, 2011) and is recommended through Early Intervention Teams in the National Institute for Health and Clinical Excellence guidelines (2013; 2014) upon first episode but also Carers Trust UK (2013) recommend it for all care pathways.

The role of psychoeducation:

Carers frequently want practical advice (Leavey et al, 1998 cited in Gamble and Brennan, 2006; Lobban and Barrowclough, 2009). Providing it can help break down some beliefs around mental illness (Faddon, 1998 cited in Gamble and Brennan, 2006), though unfortunately, professionals do not necessarily view it within their remit (Kuipers, 2010 cited in Yesufu-Udechuku et al). A study carried out by Rahmani et al (2015) on families with a relative with schizophrenia found 88.9% had a negative attitude towards them but with psychoeducation, attitudes significantly improved.

Psychoeducation is recommended by the World Health Organisation (2012) for psychotic illnesses, including Bipolar. It aims to support recovery through services working with carers as ‘partners in care’ within treatment planning. Carers are viewed as helping not hindering (Encyclopaedia of Mental Disorders, 2016; Improving MI Practices, 2016). Differing from family therapy, focus is on illness not the family (Improving MI Practices, 2016) although another aim is increasing their wellbeing (Encyclopaedia of Mental Disorders, 2016). Studies claim psychoeducation has positive effects on quality of life/psychological wellbeing (Yesufu-Udechuku et al, 2015).

Coping skills are taught along with illness education, aiming for relapse reduction, decreasing isolation and restoration of occupational/social functioning for better patient outcomes (Encyclopaedia of Mental Disorders, 2016). Through illness education, they can discover how best to manage it, identifying early warning signs/symptoms; reported to reduce hospitalisation by 20-50%. Patients/carers benefit from knowing they are not alone (Improving MI Practices, 2016), are better equipped to solve problems, knowing crisis management information (Dixon et al, 2001 cited in Improving MI Practices). Additionally, self-blame/blame from others can be reduced (Smith, Gregory and Higgs, 2011) as can negative views towards services (Addington et al, 2003 cited in Yesufu-Udechucku et al, 2015; Tennakoon et al, 2000 cited in Yesufu-Udechucku et al, 2015).

However it is important to consider psychoeducational content, as contrary to claims of effectiveness, it does not always improve outcomes (Barrowclough and Hooley, 2003) as attributes such as blame/anger towards relatives can be difficult to change (Eisner and Johnson, 2008).

According to Lam (1991 cited in Gamble and Brennan, 2006), improved medication adherence/monitoring of patients by services and LEE achieves better outcomes through family intervention. Care costs are claimed to reduce (due to fewer crises), relieving burden on services (McFarlane et al, 2003 cited in Improving MI Practices, 2016).

However the opposite has been found; in LEE environments, psychoeducation led to increased psychotic relapse (Linzen et al, 1996 cited in Smith, Gregory and Higgs, 2011), though families tend to withdraw if they perceive a drawn-out intervention (Leff et al, 1982 cited in Smith, Gregory and Higgs, 2011). This illustrates the importance of tailoring information at the appropriate time (Smith, Gregory and Higgs, 2011), pitched at the right level (French, 2010). Overall though, it appears much literature around psychoeducation proves a more favourable outcome for carers/patients.

Reflective Development Plan/Psychoeducational Approaches:

During this module, our family groups created a psychoeducational leaflet for families, choosing anxiety, because we know worry is common in families. We felt it important to use recovery language to offer hope (our whole ethos!), normalise, and provide anxiety management. It included general information/wallet sized relaxation techniques to cut out/a worksheet identifying personal triggers/symptoms/thoughts/coping techniques, and mindfulness art to colour in. We worked well together, using individual strengths, agreeing an action plan and were pleased with the end result. We received good feedback and it was not difficult to do.

I think it could be transferable to all settings, forming the basis of a useful conversation. Like any intervention though, I recognise it needs to be tailored, as families have varying needs. They may not experience significant anxiety, or already have the knowledge! Timing, type of psychoeducation (content/length/mode of delivery) will determine effectiveness/usefulness, as our speaker, Louise discussed, but before anything I would consider the therapeutic alliance and appropriateness.

SMI is in my family and I have faced most, if not all, barriers/issues discussed: capacity/engagement/confidentiality/not being offered or aware of a carers’ assessment/plan or family work. I was unaware these problems are so widespread. Perhaps I am biased but I concur with the theories of stress vulnerability, burden and EE and feel able to incorporate/consider these in practice. I do, therefore, feel very strongly about the importance of working with carers and the need to make them aware of support available, even if their loved ones do not consent. I feel more confident having discussions without breaching confidentiality and gently challenging information sharing perceptions, and reflections, in practice.

I look forward to using the assessment tools, offering carers assessments and carer plans having learnt from the module that these will form the basis of formulation/engagement/planning/wellbeing/identifying appropriate psychoeducation (single/multi-group/website/book/leaflet/1:1 etc.) around knowledge of illness/medication/triggers/EWS etc. and support needs (problem solving/carer groups e.g. Rethink Siblings Network/Bipolar UK/referrals/contacts etc.). I will continue developing knowledge of/confidence in using these and contact Gina Smith for further family work support/learning and getting more involved with carer work.

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