Support for carer’s of people with schizophrenia
This literature review will be based on finding evidence for the support received by carers of people with schizophrenia, the focus of this document will be specific to 24 year old male diagnosed with schizophrenia and living at home with parents.
For confidentiality purposes, patient will tae on assumed name of Alex. Alex is 24 years of age and was diagnosed with schizophrenia at the age of 19 whilst in university. He had admitted to use of illicit drugs (crack cocaine and cannabis) he ha also stated that he at times was able to consume a bottle of voda in one night.
On admission, Alex was presenting with delusional thoughts of persecution, paranoia and thought disorders.
Alex is being discharged from hospital and is going back home to stay with parents who will be his main carers.
Corcerns raised were, what support they will receive in the community from health practitioners with regards to coping psychologically, physically, socially and economically
Definition of carers:
Carers can be defined as family members, partners or friends who provide unpaid support to people who experience illness, disability or frailty(Hancock and Jarvis 1994).Although Stalker (2003) makes a distinction between informal helpers and those who take on major responsibilities, Rethink (2006) proposes that all people providing substantive care should be defined as carers.
In the UK, half a million people care for people with severe mental illnesses (Princess Royal Trust for Carers 2002) with 40 per cent living with those for whom they care (Rethink 2006). Carers UK (2008) estimates that carers save the economy ?87 billion a year.
Of people with schizophrenia, 60 per cent live with significant others (Hughes et al 1996) and the same proportion return home to their families after their first admissions (MacMillan et al 1986).Many carers describe their role as a burden.
Caring can disrupt their lives, restrict the activities in which they can take part, bring financial hardship, and reduce their time and energy to take part in paid work (Ferriter and Huband 2003, Oyebode 2003).Meanwhile, by focusing on the mental illnesses of the people they care for, carers can neglect their own social support networks, leaving them isolated (Rose et al 2002).
Brief understanding of schizophrenia:
Schizophrenia is a mental illness that affects about one in a hundred people at some point in life. The first acute episode where symptoms of schizophrenia are experienced can be a devastating experience, particularly as both the person experiencing the illness and their family and friends will be unprepared. The highest incidence of first experience of an episode is in the late teens and early 20’s, which is a time of change anyway, making it difficult to understand what is happening to a relative or friend who is developing schizophrenia.(Rethink 2011)
The search for research articles were focused on carers, schizophrenia, carers support and nurses support for carers and patients.
National and international research surrounding this topic were sought, the search was narrowed down to between 1999 and 2011.
Electronic databases and interenet sources such as google academia were searched as well as websites of ey organnisations such as Mind, Rethink, NHS choices, Sainsburys Centre for Mental Health. Other searches were carried out at the university library and its digital library such as CINHAL, psychINFO and British nursing index.
Researh article on this topic were a total of 1435 hits, this was narrowd down to specific search and this generated 213 hits. 10 researh article were chosen read, evaluated and out of that six research article were determined and selected to be relevant and signnficant contribution for this literature review.
Research articles used in this essay are qualitative and quantitative. 4 are qualitative and 2 quantitative.
In all six article nurses were chosen at random to help in the support of carers.
In all research articles, in depth interviews were conducted to collect data, these were recorded on audio tapes and in field notes. Interviews were focussed on the views of carers concerning nurses, and nurses concerning carers.
The research article reviews the findings of a study of the views of 13 carers of people self-identified as having schizophrenia on the nature and extent of their role, and its effect on their lives and identities. According to these findings,carers experience stress and illness, and thinkthat the support they receive from professionals is inadequate. As a result, they think that help and psychotherapeutic interventions, such as family therapy, should be more accessible.
The purpose of the research articles were to identify the support needed by carers of people with schizophrenia.
On reading the research articles, it was noted that Mental Health nurses and carers were used as samples in the reseach work.
Registered Mental Health Nurses aged between22 years and 51 years with clinical experience ranging from1 to 14 years. The sample consists 10 nurses, nine being female and one male. Three were charge nurses and six staff nurses. One nurse moved on to a managerial post leaving nine nurses in the research. They were assigned a client each with the carer of that particular client. Nine carers received support.
Community based psychiatric nurse in Taiwan gathered data on the coping experiences of carers living with and taking care of someone who has a family member with schizophrenia were compiled. The carers selected needed to be the major caregivers and the patient must have had clinically diagnosed schizophrenia for at least one year and carers had to have been living with the patient for at least one year since the onset of the illness. The sample size comprised 10 carers (five men and five women). All of the carers were contacted by their community home care nurses first to gain consent to participate in this study.
The other four remaining research articles used a sample of nurses and carers which comprised in the range of 10- 30.
In the research articles two types of burdens were broadly discussed, these being objective and subjective burdens.
Many carers describe their role as a burden.Of people with schizophrenia, 60 percent live with their significant others (hughes et al 1996) and the same proportion return hometo their families after their first admissions(MacMillan et al 1986).
Van Wijngaarden et al (2000) state that ,these burdens are described as ‘objective’ burdens because their effects can be measured by others. However, many carers experience ‘subjective’ burdens, which can be measured only by the carers themselves.
These subjective burdens can include depression, feelings of anxiety, and a sense of loss, particularly in those for whom family life has become chaotic and disorderly (Karp and Tanarugsachock 2000).
Those who have become isolated often feel vulnerable (Rose et al 2002) and, in 625,000 carers in the UK, the stress of caring has even led to mental or physical illnesses (Carers UK 2008). • Carers’ main objective burden concerns lack of employment and finance (Magliano et al 2005, Sreeja et al 2009) and the main form of practical help carers need is more responsive and user-friendly support services. Carers’ subjective burdens include feelings of chronic stress, isolation, despair, fear and exhaustion(Ward-Griffin and McKeever 2000), and healthcare professionals can respond to these by offering carers more psychotherapeutic interventions, including family therapy, to help them cope and to reduce disruption in the home.
Carers have an enormous amount of responsibilit>’ for the welfare and managementof people with a mental illnessin Britain (Cuijpers, 1999). This is recognized in recent Government policies that stipulate the
support required to enable carers to continue caring (Scottish Intercollegiate Guidelines Network (SIGN), 1998; Department of Health
Further findings were the perception of health professional about carers and vice versa were varied in the research artilcle . These are in bullet points below. Their view of carers and health and social care professional were at odds with each. Below in bullet points were some of the thoughts expressed:
Carers are of the view that Health care professionals must engage with carers rather than criticise them for notconforming to professional assumptions.
The study also shows that the burden of care is rarely taken up fairly. Most major responsibilitiesare usually taken on by one person, and the chancesthat this person is male or female are fairly even.
However, the burden of care can be greater forwomen, who are often assumed to be the maincarers for all of their family members, not only for the people with schizophrenia.
Healthcare professionals, more specifically mental health nurses, need to understand that their views and perceptions of mental illness, the appropriate care for people with mental health problems, and those of the carers, differ.
They should also understand that, to support carers appropriately, they must provide practical help: for example, more support for carers of mental health patients.
In the literature, moreover, health and socialcare professionals characterise the role ofcarers as ‘overprotective’ (Croydon-Smith 1982,Haddock et al 2003).
With half a million people in the UK caring for peoplewith severe mental illnesses, (Princess Royal Trustfor Carers 2002) this article research article also identified the findings of a study of the views of 13 carers of peple clinically diagnosed as having schizophrenia on the nature and extent of their role, and its effect on their lives and identities. These views are in bullet points below
According to these findings,carers experience stress and illness, and thinkthat the support they receive from professionals isinadequate. As a result, they think that help and psychotherapeutic interventions, such as family therapy, should be more accessible.
Participants also thought that their perceptionsof schizophrenia and of those who have thecondition differ from those of health and social care professionals, and that this difference addedto their burdens.
For instance, one participant said of what he and the healthcare professionals he encountered thought was best for his son: ‘As far as I was concerned, he needed to be in hospital, but they would not agree.’
Another participant made a related point about the care given to her daughter: ‘Sometimes,the hospital staff would give advice. They said,“involve her in your decisions”, but we thought thiswas a terrible idea. She could not think properly.She was unable to.’
One carer was angry at healthcare professionalsbecause they appeared to override his concernsabout his wife, saying: ‘The psychiatrist said to mywife, “Do you want to come in to the hospital?” and she said “No”. I was amazed because the doctor
agreed with her. I told them about her behaviourin the house but it was not my decision. It was her decision.’
Some participants’ relationships with healthcareprofessionals were unsatisfactory for practical reasons. For example, one said of his wife: ‘It was unfair to leave her to me. These nurses start their
shifts, do eight hours and then go home. I had it 24 hours a day.’
Another said, also of his wife: ‘I tried so hard to care for her, but the community psychiatric nurse did nothing to help.’
Other staff also came in for criticism, with oneparticipant commenting on healthcare professionals’ lack of understanding and availability in caring for her son: ‘He would go berserk and, I called the doctor and the social worker. But they came and said he did not need sectioning.’
Those who have become isolated often feelvulnerable (Rose et al 2002) and, in 625,000 carersin the UK, the stress of caring has even led to mental or physical illnesses (Carers UK 2008).
Findings:Who becomes the carerTypically, one person in each family had become the main carer,which means that the burdens of caring were not shared equally. Nearly half of the participants inthe study were male carers, although some of thesereported that extra burdens of caring had been placed on their daughters.One male carer said of his daughter, who had taken on some of the routine caring role: ‘I felt bad enough that my oldest girl was doing all the work around the house. There was time for all this when she was a married woman.’
Another male carer said of his eldest daughter:‘She looked after the youngest when her motherwas sick. She seemed to know her mother was
mentally ill. She had to grow up quick to do thingsround the house.’
The objective burden Generally, carers tended toidentify the burden of caring in practical terms,citing the need to undertake tasks such as cooking,cleaning, housework and shopping, and of ensuring that the people they cared for were not left alone.
gets one a day. For some participants, providing practical carewas a major challenge. ‘He has become extremely difficult to control. More than difficult. It is worse now.Over a period of time, he has got worse. He actuallyattacked his dad.
There was a widely held belief among participantsthat the people they care for are unable to cope withtheir illnesses, and have become irrational. One said,for example: ‘I was worried about leaving her alone
in case she got it all wrong and did something stupid.Some days she cannot take care of herself.’
Another reported: ‘I had to take care of her andprotect her. She could not cope. I could not leave heralone, she was too sick.’There was a perception among participants thatthe people they care for are in a position analogousto that of children.
my wife and I could not leave her. It was like she wasa child again.’
A participant whose family had become carerssaid: ‘We could not leave her alone because she mightdo something. She is ill. We cared about her.’
And a carer said of her son: ‘I think I must takecare of him. It is like the umbilical cord is still there.’ The subjective burden Participants also mentionedthe subjective burden of caring. All of them saidthat they had experienced anxiety, some saidthey felt depressed and others that they feltconstantly sad. Most of them also felt angry,although a few had become resignedtotheir situations. Most paticipants also reported physicalproblems such as headaches, stomach pains orconstant tiredness, often caused by insomnia.
One participant’s comment that she felt ‘tired,drained and worn out’ was typical.
Some participants said that the people they caredfor had changed so much because of their illnessthat they had become unrecognisable, and that thesechanges added to the burden of caring.One participant said of her son: ‘He is not my sonany more. He is just some creature, some monster.
I told the social worker, “I am tired, I cannot have my son living with me much longer”. I have forgottenwhat it means to have a normal life. I have taken tolocking my bedroom door when my husband is away.
I am afraid of my son.’The realisation among participants that the hopes
they had once invested in the people they care forwould not now be fulfilled was a further cause ofdistress.
Views of health and social care professionals.
Over the last 20 years, a number of initiativesaimed at supporting carers of people with mental illness have been developed,many of them involving nurses (Leff andVaughn, 1985; Hatfield, 1990; Falloon et al,
1993; Atkinson and Coia, 1995). The number of sessions delivered by the nurses ranged between 1 and 12 and the duration varied between 45 minutesand 2 hours. Eight carers requested homevisits, and one nurse met the carer in a private room withinthe hospital. The number of sessions varied in response to
carers’ needs. Some had few support needs but still found it helpful to talk about carer related issues. Carers reportingmore complex needs required more intensive support.
Training nurses to support carers of peoplediagnosed with schizophrenia appears to have been overlooked in some psychosocial
The research articles outline how a training programmefor nurses, based on the work of Nolan et al (1999), and building on training
developed by Atkinson and Coia (1995), was developed. This has helped formulate a needs-led support service for carers whose
relatives arc diagnosed with schizophrenia.The key components of the support arc thoroughneeds assessment and meetingneeds through agreement and careful planningwith carers.Nurses should work in partnership withcarers in order to achieve these aims, and this
is dependent on mutual respect of eachother’s status and expertise.
The present study will allow evaluation onhow far the training programme enables nursesto meet carers’ needs, and how confident
the nurses are in offering support to carers.Carers’ views are important concerning theappropriateness of the support programmein meeting their needs. Following this study,training and intervention will be refined. As
such, it represents the first phase of aresearch programme investigating rhe trainingneeds of nurses and the usefulness of support
Current United Kingdom (UK) health and social care policiesplace the needs of carers to the fore on the service provision agenda (Hancock & Jarvis 1994, Department of Health[DoH] 1999a, 1999b). Commitment towards care in thecommunity explicitly relies and builds on the family system toprovide unpaid support to clients (James 1992, Nolan et al.
1999, Hirst & Arksey 2000, Nolan 2001). Evidence,however, consistently indicates that carers’ needs for support remain largely ignored by health professionals (James 1992,Twigg & Atkin 1994, Atkinson & Coia 1995, Henwood1998, Rose 1998, Warner & Wexler 1998, Hatfield 2000,
Nolan 2001). Further, the most effective ways of meetingcarers’ needs remain unclear (Nolan et al. 1995, Rose 1998,Clinical Standards Board for Scotland [CSBS] 2001). If professional support offered to carers is to improve then health service professionals, including nurses, need to develop their understanding of carers’ needs and develop interventions to meet these needs (Atkinson & Coia 1995, Casey1995, Nolan et al. 1995, Kellett & Mannion 1999, Hatfield 2000, Magorrian 2001).
The research studies focus on the primary carer: i.e. a family ornonfamily member who provides care or support to someonediagnosed with schizophrenia and is living in the community.
Evidence indicates that caring for a relative diagnosed with
schizophrenia can be stressful and may result in increasedburden (Cuijpers 1999). The UK National Strategy for Carersrecognizes this and introduced measures to support carers(DoH 1999b). The National Framework for Mental HealthEngland (DoH 1999a) places high priority on carers. Arisingfrom this, clinical standards were set for the professionalsupport of carers of people diagnosed with schizophrenia
within Scotland (CSBS 2001).There is a lack of robust evidence on the most effectivemeans of providing support to these carers (DoH 1999a,
CSBS 2001, CSBS 2002). As a result, the clinical standardsfail to indicate how carer support should be achieved. Keyfindings from a national review of clinical standards forschizophrenia (Scotland) (CSBS 2002), found that while someinnovative practices existed a comprehensive range of serviceswas lacking. A review of support interventions for carers of people diagnosed with schizophrenia indicates that mostprofessional support has an educational focus (Mari &Streiner 1994). However, carers also want emotional andpractical support (CSBS 2002). Not surprisingly, many carersreport that their needs are ignored or given low priority(Nolan et al. 1994, Twigg & Atkin 1994, Wray 1994,
Atkinson & Coia 1995, Chambers et al. 2001). Spaniol(1987) and Milleken (2001) suggest that professionals are often unaware of carer needs and level of service dissatisfaction.Nolan and Grant (1989) highlight that this may lead toirrelevant support and Walker and Dewer (2001) indicatethat this may result in misunderstandings that can increase
carer stress and dissatisfaction and inhibit them from seeking further help
Complex needs arose from the carers mental health or family problems, social isolation, the client’s mental health problems or admission to hospital. Carers experienced no difficulties arranging sessions with a nurse.
Nurses accounts of practice working collaboratively with carers
Prior to training, nurses described their contact with carers as largely occurring during crisis or when carers required specificinformation about the client. Nurses described the nature of this contact as informal, ad hoc and unstructured,
with no guarantee that carers received the input that they needed. None of the nurses had prior training in carer support and reported that their basic training had not preparedthem to work with carers.
A key practice outcome was that nurses work collaboratively with carers. To achieve this nurses had to: listen to andacknowledge the carers’ perspective; remove barriers preventing carers from openly communicating with them; acknowledge the expertise of the carer and adopt an expert to expert approach in their interactions with the carer. Following training, most nurses found working collaboratively with
carers to be one of the easiest aspects of their practice.
Before I used to think I was the expert. I was there to give information.
Now I am more prepared to listen to what carers have to say. I learned a lot from (carer). I really did, about the illness. It is not that I didn’t know about it but I learned what it is like, I suppose, for somebody caring 24 hours a day, 7 days a week.
The purpose of the study was to understand the coping experiences of carers living with a family member with schizophrenia by describing their experiences through a qualitative phenomenological approach. Our research may be a valuable reference for mental health professionals
seeking to improve the quality of care for people with
schizophrenia and their carers.