Burden of care

There is no doubt that family members and sometimes friends often experience burden of care when trying to support a relative or friend with a severe mental illness such as schizophrenia. This burden can be compounded when co-occurring disorders such as substance abuse are present. By burden, we mean that providing care is experienced as emotionally demanding and stressful over an extended period. Carers have been found to exhibit very low wellbeing as a result of the demands of care giving (Cummins et al., 2007). Carers report a range of psychological problems such as depression, anxiety and stress (Briggs & Fisher, 2000; Butler & Bauld, 2005). Carers also often report financial burden, having less time for themselves, and negative impacts of illness and stigma on relationships (Kirby et al., 1999; Milliken & Nortcott, 2003; Ranganathan, 2004). Therefore, burden is not just about immediate stress related to care, but includes relational and personal disempowerment. Burden may be associated with one or more of the following.

• Guilt – feelings of responsibility for having contributed to the mental illness through inadequate parenting or partnering, through failure to seek help sufficiently early or to provide effective care. Guilt is often associated with feelings of inadequacy and personal failure. People respond to guilt differently. Some become depressed, whereas others project their guilt and blame others.
  
• Fatigue – feeling a lack of emotional strength or having insufficient resources to continue providing care. These may be associated with constant worry about the person with a mental illness, a sense of never being able to escape from care responsibilities, and the uncertainty of the illness trajectory or their own future.
  
• Frustration – these feelings may be directed towards the person with the mental illness, towards the health system or both. When directed towards the person with mental illness, the feeling may be that they are not trying to help themselves or are self-centred and unappreciative. When directed towards the health system, the feeling may be that the system is chaotic or disorganised, uncaring, that they let carers down or neglect them, or that it is plain incompetent.

The starting point for any effective work supporting families is understanding and respecting the burden of care. Effective work aims to reduce the burden and orient carers towards their own personal and relational empowerment. In turn, this work improves the likelihood that the person with the mental illness will feel supported in their recovery. Empowerment begets empowerment, which is central to recovery.

When symptoms are less prominent, acute episodes less frequent and life functioning more independent, burden is less. However, even when there is optimal treatment and rehabilitation, many people with severe conditions such as schizophrenia will continue to experience symptoms and impairments and it is in these circumstances that work supporting families is most effective and necessary.

When we are effective in reducing the burden on families, there are likely to be benefits for the client. There is good research evidence that when families and carers can reduce their burden, their interactions with the client are less entangled, enmeshed or conflictual, potentially more empowering, and are associated with reduced frequency of acute relapse (Barrowclough et al., 2005; Clark, 2001; Glynn et al., 2006; Moore, 2005; Schofield et al., 2001; Needle et al., 1988).

Carer burden can affect the carer’s life to such an extent that they are in need of their own recovery. An obstacle here, though, is that carers will often view ‘recovery’ as only applicable to the person with the illness, only seeking help to manage the illness of the client and focusing on strategies to cope with the illness. This is to be expected, particularly in the earlier stages of the illness, as the person with the illness often becomes the central focus for the rest of the family, often drawing attention away from the needs and wants of other family members. This preoccupation can result in being enmeshed with the family member with the illness (e.g. Needle et al., 1988) and an erosion of the other family members/carers’ sense of self. It can have negative effects on their own wellbeing and growth (Schlesinger & Horberg, 1994). It is also not unusual for some family members to feel like they have lost contact with themselves completely (Karp & Tanarugsachock, 2000). If family members/carers are able to refocus back on themselves and their own experiences (Brown & Lewis, 1999; Muhlbauer, 2002), they are more likely to create a more positive self-image which helps them to more effectively negotiate the uncertainty of living with mental illness (Schlesinger & Horberg, 1994).

The skilled practitioner pursues ways of engaging carers such that they:

• feel heard
  
• have their experiences normalised where possible
  
• are provided with information and strategies to cope with the illness
  
• start to consider ways in which they could reconnect with their strengths
  
• take their own lives back
  
• find ways to move forward regardless of the fluctuations in illness symptomatology.

In effect, this type of personal and relational empowerment parallels personal recovery in mental illness (Buckley-Walker et al., 2010; Slade et al., 2008). If carers learn to help themselves they are in a better position to help the person with the illness.

Over recent years there has been an increasing focus on ‘family recovery’ (Karp & Tanarugsachock, 2000; Milliken & Nortcott, 2003; Muhlbauer, 2002; Pagnini, 2005; Rose et al., 2002). Key family recovery stages emerging from this literature are:

• initial recognition of a problem (i.e. something is wrong but hoping it will just go away, yet preoccupation with client continues to build)
  
• clearer recognition or confirmation of a disorder, yet still hoping for a cure
  
• coming to terms with the chronicity/trajectory of illness
  
• acceptance of the illness, reclaiming one’s own life.

Each of these stages requires different types of support for the family.

As outlined below, families and carers will probably benefit from accurate and practical information about illness features, origins and potential trajectories, particularly across the first three stages of family recovery. However, this recovery journey for families involves grief and loss, a reconfiguration of life directions, and working on personal and relational empowerment. This means the practitioner needs to be sensitive to where the individual family members may be on their journeys and what they are ready to work with, help them to feel heard and validated where they are, and help create opportunities for them to feel strong enough to move forward with their own lives.

There are six key ways in which we can contribute to reducing burden of care and increasing empowerment.

In this chapter we will look more closely at the three key interventions that are not covered in detail in other chapters, namely psychoeducation, collaboration and relational empowerment, and peer support. Please see Chapter 7 for more details and practical guidance as to how to work effectively with problem solving, strengths and values clarification, and goal setting and action planning.

Psychoeducation

Psychoeducation involves the provision of information about the person’s illness and the potential effects on other family members. The central questions in the minds of most carers will be:

• How did it come about (and was it my fault)?
  
• Will she or he get better?
  
• What can I do to help?
  
• What might I do that is not helpful?

Carers will not always ask these questions directly, which means that it is the responsibility of the practitioner to address them, even if they are not raised. You can approach these topics by saying something like ‘you might be wondering how or why he developed this illness’ or ‘people in your position often ask what the future holds for her’. Most times the carer will affirm that they do want information in the area you have flagged.

There are two broad approaches to psychoeducation, both of which have advantages and disadvantages. One approach is to communicate with the family from the position of an expert, whereas the other approach adopts a position of humility. You have to decide which suits the family better. If you are very skilled you can combine both but this can be difficult.

A position of expertise emphasises how much we now understand about mental illness, emphasising our understanding of its bioneurological basis and the power of evidence-based interventions, both psychopharmacological and psychosocial. The ‘survival skills’ workshops developed by Bill McFarlane and colleagues as a prelude to their multiple family psychoeducation group programme are a good example of this approach (McFarlane, 2004). Families are shown slides of brain scans that illustrate how schizophrenia is a disease of the brain and provided with high-quality information about the impact of antipsychotic medication. This kind of information is valuable because it builds confidence among families that the professional team in highly competent and up to date. It also imparts a very important message: schizophrenia is a brain disease and it is not your fault that your son or daughter has the misfortune to have acquired it.

In response to the first question listed above, the expert is likely to focus on the brain and to draw parallels with other conditions that involve constitutional defects of one or more organs. In other words, mental illness is caused by a brain defect or deficit. In response to the second question, the expert will focus on the importance of minimising relapse by careful compliance with medication, which regulates or compensates for the brain defect. In response to the third question, the expert will emphasise collaboration with the treating team, with the carer being a kind of ancillary case manager, looking out for early warning signs, monitoring medication compliance and supporting rehabilitation strategies. These are roles that many family members welcome (see below).

A position of humility emphasises how little we know about mental illness and its treatment. While acknowledging that a condition like schizophrenia involves disturbance of brain function, the humble practitioner equally admits that we have little understanding as to why or how some people develop the condition. With respect to medication, its value in treatment of acute episodes and prevention of future acute episodes is emphasised but it is equally acknowledged that there is little if any impact on negative symptoms and that side-effects such as weight gain are problematic and often difficult to manage. The humble practitioner is likely to emphasise recovery as a personal process and journey rather than something that is attributable to clinical interventions. The main advantage of humility is that family members do not develop unrealistic expectations. It may also reduce the risk of passivity. While the humble position does not so overtly absolve the family of any responsibility for the mental illness of a daughter or son, it avoids any kind of finger pointing.

In response to the first question, the humble practitioner will point to the complexity of causal factors, having reference to a biopsychosocial and/or stress diathesis model. In other words, while it is possible to point to a range of factors associated with mental illness, for any specific person it is difficult to be confident as to which or which combination of factors is most important. In response to the second question, the humble practitioner will point to evidence of a tendency for people to recover over time but will also highlight the variability of recovery trajectories and the difficulty of predicting which trajectory a particular person will take. In response to the third question, the humble practitioner might make some suggestions but also advocate for a trial and error or learning from experience approach – ‘keep doing what works and stop doing what doesn’t work’. It is also important, as mentioned above, that the humble practitioner recognises that each family member/carer has a unique recovery journey and may be more ready for some types of information and other interventions than other types. Adopting a curious, enquiring approach will help to determine the particular psychoeducational needs of the family member/carer.

Whatever position the practitioner adopts, it is useful to link families and carers seeking information to some of the many high-quality sources of information available online. It is also important to remember that simply pointing families and carers to information resources will not necessarily mean they will make the most of these resources, or in fact be able to access them. It is recommended that time is spent talking through key information with carers before providing them with written summaries and weblinks.

Some examples are:

• http://mentalhealth.com which is very good for information about diagnosis and treatment of different psychiatric disorders.
  
• http://www.sane.org which contains useful factsheets as well as some podcasts and other resources.
  
• http://www.rcpsych.ac.uk/mentalhealthinfoforall.aspx which provides factsheets and other resources prepared by the Royal College of Psychiatrists in the UK.
  
• http://www.arafmiaustralia.asn.au/recovery.html which provides useful information and stories of other people in relationship with people with mental illness.
  
• www.eppic.org.au Early Psychosis Prevention and Intervention Centre: information and fact sheets on psychosis.
  
• www.orygen.org.au ORYGEN specialist youth mental health service, a research centre and a range of education, training, advocacy and health promotion activities.
  
• www.mmha.org.au Multicultural Mental Health Australia: information about schizophrenia in different languages.

Relational empowerment

Another important psychoeducational area is that of unhelpful relationship dynamics, or reaction patterns, and how the carer might start to work on relational empowerment. As mentioned earlier, it is not unusual for different family members to deal with grief, loss and trauma in different ways. Recovery from mental illness or other problems like alcohol and drug abuse doesn’t come with an instruction manual and families often take on roles that are understandable and driven by good intentions. However, sometimes these coping reactions can over time impede their own growth and the recovery of the person with the illness.

Some of the responses and roles carers adopt may be necessary at times. For example, when crisis occurs someone needs to take control. That person may take on the role of caretaker, peacemaker or rescuer. Other family members in the same situation might withdraw and start criticising what is going on from a distance. These reaction patterns may broadly fall under the roles of victim (where the carer feels their needs are not being met or are ignored), persecutor (where the carer is angry, fed up and critical) or rescuer (where the carer tries to fix everything, often driven by guilt and worry) (e.g. Choy, 1990; Fulkerson, 2003; Karpman, 1968). These roles usually have a function, such as easing tension or containing and trying to fix or change the ‘problem’. It is important to know when certain reactions and roles are helpful and when they become less helpful. The main questions here are:

• Is the carer’s behaviour helping themselves and the person with the illness, or is it taking responsibility for their recovery away from them?
  
• What is the function of the behaviour, and how might this function be better served?

An example of ‘rescuing’ might be keeping track of psychiatric medication and putting it out for the person with the illness to take. This may lead the person with the illness to feel complacency and/or resentment for being controlled. It is not so much being protective that is the problem here, it is being ‘overprotective’. When carers find that everything in life is centred around the person with the illness to the exclusion of almost everything else then it’s probably worth looking at whether this is still the best way of responding. The challenge is when this type of caring leads to family members doing things for others that in the long run they would be better doing for themselves. This way of responding is also a problem when it prevents the carer from moving on with their own life.

An example of ‘persecuting’ is when family members become aloof, detached, confrontational, critical or underinvolved. The carer might try and make the person with the illness (or other family members) feel guilty or ashamed enough to want to change or ‘get their act together’. Unfortunately, using guilt and shame tends not to bring about long-term change and can often make things worse.

The ‘victim’ response can be when the carer blames someone else for their woes, in such a way that they feel helpless/powerless and avoid taking personal responsibility to make changes. This is not to suggest that the carer reacting in this way does not have genuine suffering – far from it. In fact, the suffering will often be ­compounded by the stigma associated with mental illness, a poor response from the mental health system, or the lack of appropriate support from family or friends. Unfortunately the suffering, distress and helplessness that family members often feel are likely to continue for themselves and the person with the illness if their ­reaction roles become rigid.

Changing these patterns can be difficult, particularly if the person has been in a caring role for many years. However, the risk of continuing such patterns is that the person with mental illness may come to view themselves as always being ‘unwell’, ‘disabled’ or ‘incapable’. This risks the possibility of them losing motivation and feeling helpless and hopeless.

Families need to find a way to care for and help their loved one that also maintains and strengthens relationships, as well as gently supports them on their recovery journey. It is important to find a balance that neither disempowers the person with the illness nor supports a pattern of behaviour that may get in the way of them living their life to the fullest. The same can be said about supporting carers.

Collaboration and relational empowerment

It is clear from both qualitative and quantitative research that families typically want to be involved in clinical decisions. Although recovery is an individual journey, it occurs within an interpersonal context. Therefore, facilitating effective collaboration between the person with the illness and their support network, and between health professionals and family and carers is a critical part of recovery support for the person with the illness and the family. Disempowerment at times appears contagious, so if families and carers feel disempowered it is likely to be reflected in their interactions with the person with the illness. However, empowerment begets empowerment, so if families and carers feel empowered in their interactions with health professions they will be more likely to pass this experience on to the person with the illness. The following areas have been identified as priorities for collaboration.

• Early intervention
  
• Crisis response
  
• Treatment plans
  
• Discharge plans

Early intervention

Families often believe that they become aware of warning signs for relapse before mental health practitioners do. It would not be surprising if this was the case as they typically have more intimate knowledge of the person and more frequent contact. They are therefore likely to notice when something seems different. However, a common complaint is that practitioners are uninterested or unresponsive when family members point to early warning signs. If a relapse does eventuate, the family understandably feels aggrieved.

Crisis response

A crisis is a subjective experience. It is also an intensely stressful experience. Families often report inadequate response to crisis. This is especially the case when the family member with the mental health problem is assessed in a hospital emergency department or by a crisis assessment team and a decision is made to send the person home. Crisis may be as much about the family not coping as the client not coping. An acute admission provides some respite and relief. Returning the client home means there is no relief for the family except perhaps that the client is not as desperately unwell as seemed to be the case. Crisis assessment typically focuses on the mental state of the client with the needs of the family being ignored or at best a minor consideration. Even when family needs are acknowledged, there is rarely effective intervention to assist families.

Treatment plans

Family members are rarely party to treatment plans. Treatment plans are typically developed by the treatment team, often with some consultation with the client. Families may get an overview at a family meeting but rarely receive a copy of the written plan and rarely actively contribute to the development of the plan. On the other hand, practitioners typically expect family members to support the plan or to play a delimited role in implementation of the plan. The research suggests that many families want a much more active role and in some cases would like to be part of the treatment team.

Discharge plans

Failure to consult with families in relation to discharge planning is one of the most contentious issues, especially when discharge is from an acute hospital admission. It is not uncommon for families to report that they first knew their son or daughter had been discharged when he or she turned up at the door. Failure to consult over discharge often feels like betrayal. It also has practical implications. The hospital may believe a person is going home into the care of the family but the family may not be in a position to provide this care at the time of discharge, even if willing to take on the responsibility at some point. At a minimum, families and carers would benefit from consultation regarding the relapse signature of the person with the illness, and what family and carers need to effectively support this person.

What are the barriers to collaboration?

Practitioners typically identify the following as reasons why they fail to collaborate with families.

• Concerns about confidentiality
  
• Respect for the autonomy of the client
  
• Difficulty contacting families
  
• Lack of time
  
• ‘Difficult’ families

There is some validity to all of these barriers but much comes down to priority. Working with families is time consuming and even more so when families are ‘difficult’. Some clients are ambivalent or even negative about collaboration with families and this means careful negotiation with both parties. Respecting the needs of the family without infantilising the client can be challenging but is very important. While time consuming in the short term, effective collaboration with families may well be cost effective in the longer term, especially if it leads to fewer acute episodes and less need for hospitalisation. Much of the relational ‘difficulty’ in families is because of the reaction role patterns mentioned above.

The challenge of confidentiality

Practitioners are bound to treat client information as confidential. This means that practitioners cannot share information about a client’s mental health or treatment with a family member without the permission of the client. Often clients freely grant permission but it is not unusual for clients to express reservation about sharing information with family members. In these circumstances the negotiation skills of the practitioner are central to a satisfactory outcome.

The following are useful tips when negotiating with a client about disclosing information to family members.

• Explain why family members want or need information.
  
• Ask the client about specific concerns they have about family members receiving specific information.
  
• Identify any specific family members the client is or is not happy for the service to communicate with.
  
• Encourage the client to identify specific things they do not want the family to know and give undertakings in relation to these specifics.
  
• Write down a list of the information that can be shared with family members that the client can sign and that can be stored in the client record as a reference point for other members of the treating team.
  
• Make sure everyone in the treating team knows that the client does not want open communication with family members and has a clear understanding of which family members the client has agreed to include in communication with the team and what kinds of information can be shared with these people.
  
• Don’t assume that consent or otherwise is static; check in with the client on a regular basis to determine how they feel about communication with family members.

Problem solving

There is an established evidence base for the effectiveness of a problem-solving framework when working with families. This section will focus on why it is helpful for ­families and on particular strategies for using problem solving with families.

Aside from psychoeducation and collaboration, the main goal when working with families is helping them to manage the various practical and emotional challenges associated with caring for a person with a mental illness. The evidence suggests that the better family members are able to cope with these challenges, the less stressful the home environment and less need for acute psychiatric care. In turn, fewer acute episodes mean less stress at home and lower burden of care. Having skills to manage stress and to cope with illness is a critical early stage in the personal and relational empowerment journey of the carer.

Problem solving is a therapy approach that facilitates family-generated solutions to problems. It does not mean that the practitioner provides the solutions. Family-generated solutions are likely to be more relevant and more successful because family members know more about their needs and environment than any practitioner can. Family-generated solutions are also empowering and build confidence among family members in their capacity to find solutions.

The role of the practitioner is to help the family clarify the problem and to find novel and practical solutions.

While problem solving seems like a very simple approach to working with people, there are some important things to bear in mind.

• Clarification of the problem should be done carefully – the problem might not be what it seems to be at first glance.
  
• Avoid the temptation to jump in and offer solutions – often the most workable solutions are those that are either generated by family members or have high levels of family endorsement.
  
• Practitioner-generated solutions might be most useful when offered as questions, e.g. ‘what would happen if …?’.
  
• When solutions don’t work, don’t worry – just get back to work with the family.

Strengths

Helping carers to identify and build strength within themselves and their families can assist in terms of finding stability throughout their recovery journeys. However, carers may struggle to identify strengths, things that are going well, and things they can draw strength from. This is particularly difficult when the focus has been on the difficulties, stress and traumas that living with mental illness can bring.

Strengths are all those things that help carers deal with challenges. They are the things that make and keep them strong, reminders of what they are capable of doing and being. Strengths might be some of the attitudes and values carers hold and can include skills and abilities. They can also be external things and people that help carers keep strong. They can be talents, resources, skills and memories that can be draw upon to get through challenging situations. The other way of thinking about strengths is that they help build resilience. Resilience is the ability to handle difficulties and the ’ups and downs’ of life without being overcome by them.

It is important to remember that strengths can be developed or expanded upon by setting and working towards goals and turning these goals into actions. So if a carer doesn’t feel strong in a particular area that does not mean that this will always be the case. Drawing on existing strengths can help build new strengths.

When the focus is turned to the strengths that different family members have, it can give them a break from focusing on what is ‘wrong’ or ‘lacking’ in each other. It can open them up to the possibilities – the potential of each individual and the family as a whole. This may lead to carers feeling more hopeful about the future. Also, if carers are looking for the potential and possibilities in others and themselves, they are less likely to get locked into unhelpful roles and reaction patterns.

See Chapter 7 for further strategies to work on building strength.

Peer support

Families often benefit from contact with other people in a similar position. The major benefits of contacts with peers are:

• reassurance through discovering that other people are struggling with similar difficulties
  
• reassurance through discovering that mental illness affects other ordinary people
  
• learning how to manage through sharing stories and experiences
  
• learning from strategies or approaches that other families have found successful
  
• discovering information or resources that other families know about
  
• developing contacts and networks that provide new opportunities for the person with mental illness or other family members
  
• understanding that carers and families can work on their own recovery journeys, and that this is not about abandoning responsibility but rather taking responsibility for the things they can change
  
• understanding the value of and pathways to taking back their own lives.

Often carers don’t think enough about the resources within their community that could be used for support, and stigma will often stop them from reaching out for support, even from people who have had similar experiences to themselves. Peer support can be facilitated and resourced by a clinical or rehabilitation service or can be independent of professional services. Some countries have flourishing carer organisations that offer a wide range of peer-to-peer services and supports. Examples of these are:

• National Alliance on Mental Illness (NAMI) in the US: www.nami.org
  
• Mental Illness Fellowship of Australia (MIFA): www.mifa.org.au
  
• Arafmi Australia: http://www.arafmiaustralia.asn.au/recovery.html

The above organisations provide peer-run psychoeducational programmes for families and carers of people with mental illness. The NAMI course is called Family-to-Family and has the following contents.

• Current information about schizophrenia, major depression, bipolar disorder (manic depression), panic disorder, obsessive-compulsive disorder, borderline personality disorder, and co-occurring brain disorders and addictive disorders
  
• Up-to-date information about medications, side-effects and strategies for medication adherence
  
• Current research related to the biology of brain disorders and the evidence-based, most effective treatments to promote recovery
  
• Gaining empathy by understanding the subjective, lived experience of a person with mental illness
  
• Learning in special workshops for problem solving, listening and communication techniques
  
• Acquiring strategies for handling crises and relapse
  
• Focusing on care for the caregiver: coping with worry, stress and emotional overload
  
• Guidance on locating appropriate supports and services within the community
  
• Information on advocacy initiatives designed to improve and expand services

(From the NAMI website at http://www.nami.org/Template.cfm?Section=Family-to-Family&lstid=605)

The Australian course is broadly similar and, according to the website covers the following:

• practical information about mental illnesses
  
• information about the mental health and legal system
  
• practical frameworks to support people to manage the impact of mental illness on their lives.