Personality Disorder Carer and Family Support Impact
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ARE PSYCHO-EDUCATIONAL AND SUPPORT PROGRAMMES FOR FAMILY AND CARERS EFFECTIVE IN REDUCING RELAPSES AND FACILITATING RECOVERY OF PEOPLE SUFFERING FROM PERSONALITY DISORDERS?
Carers and families of people suffering from personality disorder are in desperate need of support and services. Providing these services can reduce relapses and facilitate recovery in sufferers of personality disorder.
The Research Question
How can psycho-educational and support programmes for carers and families of those with personality disorder improve their recovery?
The results of this study were obtained through a systematic literature review.
Diagnosis and treatment of personality disorder are still complex and often confusing issues, even for professionals. Still, treatment can produce recovery and this recovery can be expedited if carers and families are provided with programmes to equip them to effectively face the challenges that personality disorder presents.
Providing psycho-educational and support programmes makes carers more effective and can help treat personality disorder. Social Workers can help to bridge a gap in the services that is adversely affecting the treatment outcomes of sufferers and hence placing greater strain on the Health System than is necessary.
The carers and families of individuals suffering from personality disorders are an underserved population. Considerable strain is placed upon them and their loved ones and they are often at a loss as to how to effectively perform their duties and assist the recovery of those they care for. If more psycho-educational and support programmes for carers and families were provided, it is possible that treatment for personality disorder could be improved. Personality disorders can be defined as:
“. . . psychiatric conditions relating to functional impairment, or psychological distress resulting from inflexible and maladaptive personality traits.”1
Personality disorders are explained in the two most prominent classification schemes, the DSM-IV, where personality disorders can be found in Axis II, and the ICD-10. The definitions in these diagnostic classification systems are much the same. Defining ‘severe' personality disorder has proved problematic for experts, who have yet to establish a generally accepted definition. The suggestion of the Royal College of Psychiatrists (1999) that severe personality disorder is marked by extreme societal disturbance and at least one extreme personality disorder has provided some guidance.2 Alternatively, having two severe disorders could mean that the sufferer has one disorder that expresses itself in more than one extreme way, or could simply indicate one deeply disturbing disorder. One study graded the severity of personality disorder on 163 subjects and found that the patients whose personality disorder was described as ‘complex' demonstrated the greatest number of symptoms and recovered the least.
Personality disorder carers are people who support a person who suffers from any form of personality disorder, whether they are relatives, friends or partners. Often, carers give sufferers emotional and financial support and may even act as informal social workers.
Previous studies have shown that carers of people with personality disorder benefit from psycho-educational and support programmes. Psycho-educational programmes are educational programmes that contain an element of counselling or therapeutic activity for the family. The main aim of these programmes is to minimise the strain experienced by families and carers of people with mental illnesses, here personality disorder. Psycho-educational and counselling programmes exist ultimately to facilitate recovery and reduce relapses; indeed, the success of programmes is usually measured by examining relapse rates. Programmes attempt to provide adequate support, information, signposting to appropriate resources, advocacy and respite for carers. They also coach carers to increase their problem solving abilities, improve their communication and help them construct their own support networks.
Support programmes for carers of people with a mental illness attempt to support the contribution that carers make to the lives of those they care for. They work toward advances in policy that will augment the services that satisfy carer requirements. Support programmes prompt dialogue between members of the government and carers, as well as encouraging carer involvement in the creation and delivery of carer and patient services. Further, support services connect carers with agencies to assist them in their role and facilitate modes of best practice in aiding carers.
The Research Question
This literature review examines a number of studies on personality disorder, its effect on carers and issues connected with diagnosis and treatment in an attempt to determine whether psycho-educational and support programmes for family and carers are effective in reducing relapses and facilitating recovery of people suffering from personality disorders. If social workers are to work effectively with this client base, they must put aside antiquated beliefs that personality disorder cases are hopeless and that those who suffer from personality disorder never get better. This study reveals that one of the greatest challenges to carers and families is obtaining the support they need and the services they are entitled to, and Social Workers can be instrumental in bridging gaps in the Mental Health system.
This dissertation undertakes a systematic literature review of health care and psychological literature to address key issues in the support of carers of people suffering from
personality disorders. Several different studies and a range of approaches were examined.
Although the number and breadth of studies was a strength of the review, the variety of approaches made it challenging to compare the overall merits of one study against another. The literature was obtained through a variety of means. Google searches, journal articles, working group reports, service provider reports and academic papers were used. The research methods that appear in the utilised material included telephone interviews, questionnaires and surveys, face-to-face interviews and meta-analysis. Some were literature reviews themselves and some simply reported on the outcomes when a group of treated individuals was observed. Of the studies that involved observation of a group, very few included a control group in the study so methodological rigour was not as great as it could have been. Neither is it certain that studies where self-reporting was used are as empirically reliable as one would like, as sufferers of personality disorder tend to over- or under-report their symptoms. Some of the studies that were conducted recently showed positive outcomes, but the long-term follow-up for the same groups may make the figures less significant. Even where there has been longterm follow-up, some of those who took part in the initial study may not be included because of death, inability or unwillingness to participate, or inability to be located.
The methodological rigour of the studies is further complicated by the fact that the process of diagnosis and treatment of personality disorder is fraught with complexities. The categories for personality disorder are somewhat defined by behaviours and are not theoretically based or grounded in common mechanisms of the disorder. The actions and symptoms of patients are so extremely varied that both diagnosis and treatment are difficult to present, much less to assess. Yet just because a comprehensive catalogue of truths about personality disorder cannot be presented does not mean that no reliable statements can be made. The evidence that is presented here is solid enough to make general assertions regarding the affects of carer support on patients based upon the evidence, and that is what it intends to do.
Assessing the impact of support and education for carers upon the sufferers of personality disorder themselves proved more challenging than, for example, assessing the impact of treatment on sufferers, for which there is abundant literature. Still, the impact of psycho-educational and support programmes on consumers has been assessed and outcomes observed. Additionally, the evidence for the improvement of the lives of carers and the quality of care they give their charges is strong, and this fact bolsters the hypothesis that improved care for carers improves the mental health of those for whom they care. These conclusions are definitely linked, especially given the statistics that show that improvement for personality disorder takes place over a long period of time and is facilitated by positive interpersonal relationships with people who are equipped to deal with the symptoms that people with personality disorder exhibit. The presence of positive relationships with carers who are trained, educated and supported will assuredly improve the ‘treatment conditions' for those with personality disorder.
In narrowing the scope of the literature to be included in the study, several factors had to be noted. Some of the literature was so grounded in certain programmes for certain countries that many sections were not transferable to this review. For example, the results of the Network for Carers (2004) report were based upon specific programmes offered in Australia, so some information had to be excluded. However, this document was very helpful in establishing general facts about the needs of carers and the impact of programmes upon their ability to care for sufferers. It was also a thorough exposition of the opinions of carers,through which their voice was clearly heard. There were also other limitations regarding the particular demographic studied. The NHS National Programme on Forensic Mental Health Research and Development Expert Paper on Personality Disorders primarily assessed offenders with personality disorder and not merely members of the wider public suffering from the disorder. Because of this, significant sections of the material had to be ignored. Still, this paper was useful in understanding the complexities of treatment and diagnosis of personality disorder, and provided definitions for contextualisation.
In evaluating the quality of the data, the analytical tool Critical Appraisal Skills Programme (CASP) was used to assist in making sense of the evidence. This tool is advantageous to those who are strangers to qualitative research, assessing the merits of a source with regard to rigour, credibility and relevance.CASP initially asks two screening questions, the first addressing research aims and significance. The second screening question considers whether the research interprets subjective experiences of participants.Answering these two questions with a ‘yes' then leads to eight more questions covering issues such as recruitment strategies, collection of data and ethical issues. In a literature review there are several ethical issues that must be considered, especially when dealing with a vulnerable population such as sufferers of mental illness. For each study used in the review it was necessary to consider whether ethical standards were maintained throughout the study, including the manner in which consent was obtained and the way that confidentiality was upheld. Another ethical consideration is the handling of the outcomes of the study with the participants after the study.9 In the data observed here, it is not always explicit that consent was obtained but is often implied. Eliciting feedback from carers carries implied consent even if consent was not explicit, for obviously no individual would be forced to comment against his or her will. Confidentiality is maintained through omitting names and keeping the results impersonal. Yet the information given for studies is in its final and often abbreviated form, and the background work is not always documented comprehensively enough to ascertain whether all ethical considerations have been taken into account.
One ethical consideration that is not always considered is the treatment of ethnic minorities in research projects, especially those for whom English is not their first language. The wording of questions and the criteria by which outcomes are judged is often tainted by cultural bias for those being assessed outside their native surroundings. It is practically impossible to remedy this, because part of the methodological rigour of the study depends upon all participants being treated and assessed in the same way. Differentiation on the basis of cultural differences would compromise the consistency of the study, but the impact of cultural factors is most certainly felt by those of foreign origin.
Discussion of Findings
The traits exhibited by sufferers of personality disorder differ immensely because of the wide scope of the disorder. Examples of traits range from anxiety, narcissism and
compulsivity to defiance, abnormal attachments and avoidance of social situations. Sufferers may demonstrate an arrogant interpersonal style, or may show extreme submissiveness. Personality disorders are linked with negative results in the wider population such as marital breakdown, criminal actions and professional difficulties.The anomalies of personality disorder are apparent in the thought patters, expressions and levels of self-control of sufferers. The patient will display abnormalities in the way that he or she interacts with others which will appear in a range of circumstances. There are various types of personality disorders, and each has its own banners of dysfunction. It has been recognised that the kinds of personality disorders covered in DSM and ICD are a small cluster when contrasted with the array of personality impairments that can be identified in large configurations of people.11 Personality disorders can be divided into three clusters, A-C. In the first cluster disorders relating to paranoia and schizophrenia are found. Cluster B includes antisocial and narcissistic disorders, and Cluster C focuses on avoidant, dependent and obsessive-compulsive disorders.
It is estimated that between 6% and 15% of the population have one or more personality disorders of some kind—different studies produce different results.13 The goal of one study was to estimate the prevalence of personality disorders in a local sample and discern the most common demographic groups therein. The frequency of the DSM and ICD personality disorders and the interactions between disorder clusters and demographic qualities was assessed in a local sample of 742 participants between the ages of 34 and 94 over two years.14 The results showed that the overall prevalence of DSM-IV personality disorders was approximately 9%. Among the disorders, antisocial personality disorder was the most common and appeared in almost 5% of those assessed. Dependent personality disorder and narcissistic personality disorders were rare. The prevalence of many of the individual disorders was only 1% to 2%.
For ICD-10 disorders, the overall presence in the surveyed group was 7%. Again, the prevalence for individual disorders was 1% to 2%. The most common disorder in for the ICD disorders was dissocial personality disorder at 3%. Dependent personality disorder was, again, very rare.
Who is affected?
Studies dedicated to uncovering the risk factors for personality disorder produced a variety of results. Prominent factors that may lead to a personality disorder include having a parent who is involved in or has been convicted of a crime, having a parent with deficient parenting abilities and being part of a large family. Factors such as low intelligence also feature in the list of risk factors. However, this study and studies that are similar raise certain issues about the nature of judging which factors should be included as risk factors for personality disorder. These sorts of factors could be criticised for having prejudicial antecedent assumptions regarding what it means to be a functioning human being. It is likely that people from lower socio-economic classes will have a tendency to fit these categories more than their middle- or upper class counterparts.Care should be taken in describing risk factors to ensure the language used is not biased by class.
In the study mentioned above, several demographic characteristics were assessed with regard to prevalence of personality disorder. The outcomes demonstrated that Cluster A disorders were more common in males than in females. Cluster A disorders were also more prevalent in participants who were divorced or separated than those who were married or widowed. Subjects who had never been married were the most susceptible sub-group of all.
In the Cluster B category, men were again more prone to having a personality disorder than women. Cluster B disorders were most common in the youngest age range surveyed and least common in the oldest range. Further, this cluster was most prevalent in participants who lacked a high school diploma and was least prevalent in participants who graduated from high school and continued their education afterwards. The odds of having one of these disorders decreased approximately 6% for each year an individual aged. One possible explanation for the increase of prevalence of disorder with age could be that people of more mature generations are less likely to have, know about or report symptoms of personality disorder.
The prevalence of Cluster C disorders was most closely related to marital status, again showing that participants who had never been married were most likely to have one of these disorders. The likelihood of having a Cluster C disorder was almost 7 times greater in those never married when contrasted with those who were married or widowed.
The results of this study broadly match a number of previous studies whose results showed the prevalence of personality disorders in the general population to be 9-13%.
However, there were some differences between previous studies on prevalence and this study. The present study found a notably higher prevalence of antisocial personality disorder and a much lower prevalence of histrionic and dependent personality disorders than previous studies. These differences could have been caused by methodological variants and the diagnostic criteria used such as which version of the DSM was utilised. The differences could also be a result of participant source, form of assessment, assessors experience and data collection methods. Notable strengths of the study were that the participants were obtained through a community sample and personally interviewed by psychologists who have a significant amount of experience in cross-examination. The limitations included the fact that not all subjects could be interviewed and that the sample size was not really large enough to pick up on very rare disorders.
The results of other studies have been less conclusive. An American study examined the theory that personality traits stop transforming by the time an individual reaches the age of 30. One of the major strengths of this study was the sample size of 132,515. The subjects, aged 21-60, participated in a web-based Big Five personality measurement. The results of this study showed that qualities such as being agreeable and conscientious increased during adulthood up through middle age. The quality of being neurotic diminished for women but remained static for men.20 Both men and women decreased in openness after the age of 30, and while men increased in extraversion from 31 to 60, the same quality diminished in women in the same age range.21 While the sample size of this study was certainly impressive, one concern was that conducting the study over the internet might bias it toward younger subjects. Another concern was the cohort effect, since people of earlier generations might not
engage with psychological instruments with the same ease as those who are younger.
Overall, the multiplicity in paradigms of change did not affirm either that personality does not change after 30 or that it does. The study concludes that the traits examined are complex in nature and subject to an array of developmental influences.
The onset of the de-institutionalisation of mental health establishments has produced a number of benefits. There is now less public stigma placed upon sufferers of mental illness and their traits and presence in wider society has come a long way toward normalisation. Suffers of mental illness have become less isolated and enjoy greater freedoms, including the freedom to choose from a selection of services. From a governmental point of view, deinstitutionalisation has saved them an enormous amount of money. However, the responsibility for managing and caring for mental illness sufferers has been transferred from the institution to the local community, and specifically to carers. Carers are involved in every possible aspect of the lives of their charges, even to the extent that their role could be characterised as an informal social worker. But the burden of the role combined with the lack of training, education and support often results in the damage of the psychological health of the carer, as well as strict limitations on their life outside the caring role.
The striking impact of caring on the lives of carers and other factors led to the undertaking of research on the involvement of families in managing and treating mental
illness. From this came solid evidence of the benefits of such involvement, and the needs of carers began to be recognised. In recent years services have been put in place to assure that the needs of carers are met, and education for carers has been pinpointed as the most beneficial service for carers and consumers. Carers need to be educated in order to feel equipped to perform their tasks effectively. Specifically, carers named a need for “education about mental disorders” and information about treatment options” as their most salient needs. These statements are reinforced by studies from various countries where carers named the
same things as most important for their success.
Historically, studies examining the impact of educational programmes for carers have come from two different hypotheses. The first is that the chances of a consumer recovering from a mental illness are augmented if an educated and informed family surrounds him or her. Such a family will have deeper knowledge and sympathy for the condition of the sufferer and will be equipped to manage challenging behaviours. The second hypothesis is that because of the implications of their role, carers have an inherent right to access to adequate services. They have a right to services that will enhance their individual welfare and their effectiveness as carers.
Assigning a course of treatment to personality disorder has always been an inexact science. Personality disorder is particularly complex to treat because the prime method of treatment is not always apparent after a diagnosis has been arrived at. The type of treatment which will prove most effective for the patient differs from individual to individual. Case conceptualisations can be helpful in assessing the individual's issues, identifying areas of risk and determining proper treatment goals.24 There is an abundance of research about treating personality disorder, but the studies cannot always be relied upon due to their lack of sound methodology. While some forms of treatment for personality disorder can reduce relapses and facilitate recovery, there is no simple panacea for this ailment. Cognitive treatments including cognitive-behavioural approaches have produced some pleasing results with personality disorder patients, as have psychodynamic treatments.
Individuals who suffer from personality disorder encounter several issues with their diagnoses. They may be diagnosed through the means of an interview, a self assessment questionnaire or other means. Clinical psychiatrists often diagnose patients through interviewing them with regard to the DSM or ICD categories. This method is slightly better for detecting the existence or not of a personality disorder, but shows low accuracy for particular types of disorder. Self-report questionnaires like the Personality Diagnostic Questionnaire (PDQ-IV) and the Millon Clinical Multi-axial Inventory (MCMI) are also used to diagnose personality disorder. These questionnaires are considered imprecise because individuals tend to over-emphasise or under-emphasise the issues they are having. In addition to these methods of diagnosis, there are several semi-structured interview schedules to assist professionals. These schedules feature lists of questions that correlate to the DSM or ICD and
the clinician may then mark the patient and determine whether he or she has a disorder according to the criteria. Interview schedules have shown that they are slightly more reliable than other forms of diagnosis, but this success is only relative and the results are still much less valid than is needed. Really none of the diagnostic tools should be considered better than any of the others, for they are all faulty to the extent that they cannot be relied upon.
There is a problematic absence of consensus regarding the reliability of diagnosing in general and the consistency of different diagnostic schemes. Part of the problem is that the explanations of personality disorders in the DSM and ICD feature a concoction of psychological traits and displayed behaviours, so that it becomes uncertain whether the diagnoses are attempting merely to pinpoint deviant actions or to identify traits whose presence is significant for determining personality disorder. The solidity of diagnoses for personality disorder is frequently questioned, and there are only a few disorders whose diagnoses are considered reliable. The diagnosis that can be made with the most certainty is antisocial personality disorder, because this problem can be identified by external actions that can be easily observed. Those who diagnose individuals with personality disorder are not always able to be precise in identifying which personality disorder they are dealing with, therefore multiple personality disorder diagnoses are common. Clinicians often find themselves confronting comorbidity, and prudent professionals test for the full scope of disorders.
Comorbidity is quite common, with male legal psychopaths having an average of three disorders each. Women may have four.28 There is a great amount of interaction between the descriptors of the various types of personality disorder and so it is difficult to tell them apart. When dealing with multiple diagnoses, it is advisable to keep all disorders in mind when constructing a treatment regime, even if many of the features of the respective disorders overlap.
The classification of disorders is also problematic, because the categories lack the quality of homogeneity present in reliable psychological categories of other types. Categories of psychological dysfunction work best when each class is different from others and common elements are contained within one class. This is not the case with personality disorders. For example, there are literally hundreds of ways to satisfy the criteria for borderline personality disorder, and so individuals with the same diagnosis may have utterly distinct behaviours, symptoms and needs.
Axis I disorders feature frequently in those who suffer from personality disorder, particularly where there is substance abuse or depression. The classifications for personality disorder tend neither to be theoretically based, nor to stem from statistical research, which is presumably part of the reason that precise diagnoses are so elusive. The categories are so unreliable that abandoning the categories altogether and composing a new classification system is often proposed. While this may be the ideal way to correct the flaws, the time and effort already invested in the use of the present system is likely to ensure its continued existence. One approach to dealing with personality disorder is the trait approach. This approach states that a minimal amount of theories can illumine the majority of human behaviour. Observing the personality traits exhibited by an individual and placing them on a continuum from truly normal to extremely dysfunctional is more faithful to the structure of the human psyche and tells clinicians more about the true nature of the dysfunction suffered by the patient. Currently, the most extensively developed trait theory relating to personality disorder is the theory of psychopathology.
Cognitive-behavioural treatments (CBT) aimed at treating personality disorders have a tendency to take a broad approach. CBTs engage an array of behaviours, thoughts, preconceptions and internal emotional mechanisms. Many treatments are residential and are conducted with a group. They frequently include tenets of other methods such as psychodynamic therapy. Therefore it is an arduous task to pick out what, if any, elements are effective in a multi-dimensional approach so that they can be improved and repeated.
Dialectical behaviour therapy (DBT) is a method of CBT focusing on female patients with borderline personality disorder. The goal of the therapy is to reduce or eliminate
incidents of self-harm through group skills training. Group sessions address destructive thought patterns and social skills. Individual therapy can also be used. The outcomes for one study showed that women who were treated experienced reduced anger and self-destructive or suicidal thoughts. Their social skills improved and they required less psychiatric treatment.
Arnold Lodge Regional Secure Unit has produced a treatment method aimed specifically at offenders with a personality disorder. The treatment programme centres on
teaching patients socially acceptable mechanisms for problem solving. The patients work individually and with others and receive regular counselling. This regime is supplemented with services that are individually tailored to the needs of the individual, such as anger management sessions or substance abuse education. This form of treatment has been shown to reduce deficiencies in social functioning and self-control.32 While the initial studies are promising, long-term analysis will confirm or refute the true effectiveness of this type of treatment.
Therapeutic communities, cognitive therapies and dynamic therapies may also be used to treat personality disorder. Therapeutic communities are tailored primarily for
offenders and have produced promising results in terms of reduced recidivism and improved social integration. A study into the effectiveness of therapeutic community treatment of personality disorder explored whether this type of treatment improved the health of patients to the extent that the burden on Health Services eased. Several previous studies reported reductions in the use of psychiatric services after therapeutic community treatment. The previous studies were limited by the fact that they observed participants for one year only and lacked thorough follow-up. This study sought to fill the methodological gaps of the previous studies by tracking patients for years after treatment. They assessed the impact of treatment on Health Services by counting the number of admissions to hospital before and after treatment. The study found that therapeutic community treatment resulted in a statistically significant drop in in-patient admissions over the 3-year period. Those who were admitted to hospital tended to be the subjects who had the briefest experience of therapeutic community treatment.
Another study involving therapeutic community treatment focused on individuals with severe personality disorder. The effect of psychotherapeutic treatment on this disorder was measured using the Borderline Syndrome Index (BSI) when they were referred to the programme and one year after they were released. This study featured a control group, and the results demonstrated that patients who received therapeutic community treatment significantly reduced their BSI scores. In addition, the differences between the treated group and the control group significantly positively correlated with how long the patients were treated. The study is further evidence that therapeutic community treatment can be effective in facilitating recovery of personality disorder, especially if treatment continues over a substantial period of time.
Cognitive therapies focus on the thought patterns and attitudes that control behaviour and are believed to be the units that comprise personality. These sorts of therapies attempt to alter mental schemas in order to enable more constructive patterns of behaviour. Cognitive treatments can show little empirical evidence that they are effective, but it is thought that they can make an impact on individuals with borderline or antisocial personality disorder.
Psychodynamic treatments and psychotherapy are viewed by some as the answer to criticisms aimed at psychiatrists for their failure to create effective treatments for personality disorder. These proponents of psychotherapeutic treatment assert that there is evidence that it can be effective for reducing relapses and facilitating recovery from personality disorder.
Further treatments, such as psychosocial treatments, have also been shown to improve personality disorder. One study of psychosocial treatments examined the effectiveness of hospital-based intervention using two groups of people suffering from borderline personality disorder (BPD). The first group underwent a single-stage in-patient treatment model, which involved a hospital stay of 11-16 months with no after care. The second group experienced a two-stage programme involving a brief in-patient phase followed by outpatient group psychotherapy and outreach nursing. The results demonstrated a significant difference in the ability of the two groups to adjust socially. Subject in the two-stage group fared much better on a mental health test (Global Assessment Score) after 6 and 12 months. The two-stage group significantly outperformed the one-stage group in the improvement of BPD.A deeper methodological examination of this study shows that there was no untreated control group in this study; it was not a randomised controlled trial. Nevertheless, the participants of this study had received many forms of previous treatment and failed to respond significantly to any of them. The very nature of their disorder makes them resistant to recovery. The severity of the participants' conditions makes the positive results for the two-stage method more significant.
In another study where two specialist psychosocial programmes were evaluated over a period of three years (including follow-up), 80 patients with severe personality disorder were observed and assessed for destructive behaviours. Both groups improved during the course of the study, but the improvements were significantly higher for the participants of the stepdown programme as opposed to a purely in-patient programme. The programmes were aimed at reducing suicide attempts and self-harming, and the patients were assessed on overall mental health and social abilities. The improvements associated with the specialist residential treatment of the step-down programme were still evident 2 years after the patients were discharged. One of the limitations in this study includes the fact there was no control group who received no input, only the two treated groups. Another limitation was that the subjects were not randomly allocated to the type of treatment they would receive. Despite this, the study exhibits strengths that are absent in other studies assessing personality disorder. The sample was characterised with regard to demographic features, and trained independent raters were employed to gather input. Standardised outcome measures were used along with operational criteria. Because of these strengths the results are useful in considering what types of treatments are most effective for people suffering from personality disorder. While the evidence examined here seems promising, there are a few problems with it. First, the issue of comorbidity muddies the waters and makes it difficult to match symptoms with intervention.
Advocates of psychotherapeutic treatments need to demonstrate that the transformations in personality they claim for their efforts are measurable and statistically significant. There needs to be more research conducted using random controlled experiments so that the results are scientifically credible. Further, it could be argued that the results do not point to any form of treatment as more effective than another, and this study did not deal with the question of which types of patients should be treated psychotherapeutically as out-patient, in-patient or day patients.
The Challenges of Caring: What Carers Need
There are several realities of the life of a carer that limit their ability to apprehend the educational input that they need. Carers have extremely constricted schedules and there are many demands placed upon their time. Educational programmes should therefore be arranged at times conducive to family life. Related to this are a lack of transportation and the lack of someone to look after a relative while one slips out to attend a session. Also, family members themselves often wish to avoid connections with mental illness, and therefore may avoid activities which would identify them with their loved one's condition.
At the other extreme are carers who are committed to seeking out support, but feel that they have to fight to obtain it. Many carers observed that they had to take the initiative and continue to push for support throughout the entire process of getting it. They were not given avenues in which to register complaints when they were dissatisfied, which fostered a sense of hopelessness. One US-based study revealed that carers felt increased communications with mental health workers was their most pressing need. The results of another study indicated that carers making use of both the private and public health systems were more likely to be cognisant of the services available to them than those who only use the private mental health system.
There is a sizeable amount of research to illustrate the benefits of including families in the treatment of many types of mental dysfunction. Acting as a carer is an arduous task and carers have many needs that must be met if they are to perform their roles with maximum effectiveness. The education and support of carers is pivotal to develop beneficial interaction between them and the people they care for. Carers need to feel that they are adequately informed and that they are doing the right things to help sufferers.
Many carers expressed the need for better education, more access to educational materials and educational approaches that are more stable. Carers whose first language is not English require special consideration and there is a need for information on the nature of personality disorder and coping strategies to be translated into different languages. The Carers Network and The Victorian Transcultural Psychiatry Unit recently published tips for carers and families in Greek, Turkish, Vietnamese, Arabic, Chinese and Italian as well as English.
The most emphatic theme from one study was the delight expressed by carers when extensive programmes covering a range of challenges were offered. The topics covered in the programmes examined ranged from treatment, medication and sickness to accessing services, legal considerations and bereavement. The programmes received much positive feedback because of the range of issues covered and the acknowledgement of the complex set of issues facing carers in today's world. The positive comments were followed with pleas for even more information and further programmes.
Impact on Families and Carers
Experts believe that the emotional experiences of carers of people with a mental illness are characterised by more stigma and guilt than those of other carers. The impacts on family living are more extreme because the illness suffered by the patient is intangible and symptoms are not easily understood or explained.
Living with and caring for persons with a personality disorder is a challenging daily experience. Undertaking the role of carer places a burden upon relatives and carers, and in addition to the strain of caring for another who is troubled their own needs can easily be overlooked. Individuals seldom elect to become carers and often experience the stress of having immense responsibility for a patient without the requisite training to perform their roles efficiently and with confidence. Carers usually begin their roles with little or no formal instruction in handling psychological illnesses. The impact of being a carer or family member of an individual with a personality disorder can have extensive implications.
Caring for an individual with personality disorder can bring about constructive things in a person's life, such as personal satisfaction and growth. However, carers often feel that caring for another person can result in emotional strain, unhappiness, irritation and damage to the carer's health. These negative consequences can result from a number of challenges, including the haphazard nature of mental illness, hostile or confusing behaviour, the refusing of the patient to consent to treatment and the possibility of greater financial burden as the carer assumes responsibility for the patient in this area.49 Carers and families of those with personality disorders often give up large quantities of their time to care for the sufferer and therefore lose the benefit of personal activities. Things like shopping, exercising and even seeing loved ones may be neglected when the role becomes consuming. Carers sometimes feel that there is no one to listen to them and no one to offer support or guidance. They feel under-informed about how to deal constructively with personality disorder and how to be a positive tool in facilitating the recovery of the sufferer. Their own personal lives and emotions are often neglected and they lack the knowledge of available services that could help them in their role.
While personality disorder places stress upon those who suffer from it, the Social Care system and on society generally, carers experience the most stress. This stress is exacerbated by the fact that the needs of carers and families are not thoroughly met in the UK. Some services and programmes are available, but very few are catered specifically for personality disorder. Families and carers can perceive the Health System as inadequate and unconcerned with their plight. The idea that a family approach should be taken to improve personality disorder is insufficiently promoted in the UK.
One programme conducted in Birmingham identified some of the emotions that carers struggle with on a daily basis. Carers cited anxiety, exhaustion, isolation, confusion,
desperation, hopelessness and clinical depression as some of the emotions they were experiencing. They felt they were continually second-guessing themselves in their approach to symptomatic behaviours displayed by the sufferer, not knowing whether they should be more gentle and sympathetic or more firm. They felt unsure of when to intervene and when to allow space. They also felt distressed because of the negative connotations associated with mental illness in general and personality disorder in particular. At times they felt that other blamed them for the presence of personality disorder in their loved ones. In addition to all of these troubling emotions, families experienced a degree of breakdown within broader family relationships. The distress in relationships between siblings, parents and children and spouses was evident. Family friendships suffered which increased feelings of isolation.
Communication worsened, arguments arose and some family members withdrew emotionally altogether.
Children of parents with a mental illness such as personality disorder may experience an acute form of isolation that partially stems from feeling a need to care for the person who is meant to care for them. Some children in these circumstances encounter intense conflict or even violence in their families. Children of parents with personality disorder may also feel alone because their parent is not able to interact emotionally with them, or is only able to do so in a negative way. Children may also experience a degree of separation anxiety in being apart from their parent while he or she is being treated.
Programme Impact Upon Carers and Clients
One meta-analysis examined found that psycho-educational programmes for families reduced relapses in consumers by 20%.54 This was particularly true for programmes that lasted over 3 months. Family participation in psycho-educational programmes was found to increase compliance with medication regimes. This type of benefit as well as others was found in relation to personality disorder. However, family programmes which lacked a therapeutic element and presented information on aetiology in its place failed to produce the same reductions in rates of consumer relapse.
This does not mean, however, that such programmes are of no value to the prevention of consumer relapse and facilitating consumer recovery. Several research projects have produced statistics that demonstrate that education programmes for families augment the ability of carers to handle challenging situations and bolster their capacity to effectively handle issues on their own. Such programmes also increase carer adaptability and facilitate dialogue between family members, as well as providing a feeling of satisfaction with the service structure among carers. Though these programmes have not indicated a direct reduction in the recovery of sufferers of mental illness and personality disorder, they serve to decrease the burden of carers and may have an indirect effect on consumer relapse. On the other hand, one study examined whether or not education for family members would bolster links between carers and community services. No significant change was found, however, the results were measured after only 10 weeks and they may have been different if given more time. This finding was subsequently used to argue that it would be helpful if a unit on interfacing with the mental health services system were included in carer programmes. Research has shown that if programmes are to be effective in equipping carers and easing the burden of caring, several factors must be taken into consideration. The programme will attract a greater number and more diverse group of carers if the consent and format are adaptable. The content must be contemporaneous and accessible to all levels of literacy and intelligence. The use of jargon should be avoided. Further, programmes should be devised bearing in mind the daily responsibilities of carers and their ability to leave consumers to come to sessions. In one study, carers advocated programmes that were run on a long-term basis and they could attend when the need arose and when their circumstances allowed. Although education is important it has been shown that the dissemination of the written word alone is not sufficient for the needs of carers.
A study which appeared in Family Processes in 2005 measured the changes in relatives of persons with borderline personality disorder (BPD). The relatives participated in a 12-week education programme tailored to relatives of those with BPD and based on the principles of Dialectical Behaviour Therapy (DBT).56 The programme was led by trained family members for 44 participants, most of whom were parents of a child with BPD.Assessments were carried out before, after and 6 months after the programme. The educational programme was aimed at helping relatives to cope with the problems related to BPD such as mood swings, self-destructive behaviours and interpersonal difficulties.58 The course is run in a supportive, no-blame culture, using the DBT approach to give relatives skills that would enhance their lives and the lives of their family members. In particular, the programme provided coping and family skills, opportunities to build a support network for families and contemporaneous information on BPD. The results of the study showed marked decreases in the burden and grief felt by the subjects. They also felt better equipped to cope with the challenges of having a relative with BPD. The group was assessed 6 months after the programme and the changes were sustained up to this point. In fact 3 months post-study the level of grief and burden had decreased even further. One problem with this study is that there was no control group, however, the fact that follow-up took place 6 months after the study that re-confirmed the initial positive results indicates that some link between the programme and the improvements is reliable.59 This indicates again that when carers or relatives of people with personality disorder are provided with skills, information and a support group, they become more effective as carers and the likelihood of recovery is augmented.
The present systematic literature review sought to explore the diagnosis and treatment of personality disorder and its effects upon families and carers. The things that carers need to care effectively and facilitate the recovery of those with personality disorder were identified, and it was shown that treatment for personality disorder can produce positive results. Further, it is concluded that providing services to carers and families can reduce relapse rates and facilitate recovery in personality disorder sufferers.
All that has been revealed about personality disorder and carers has implications for the entire Mental Health and Social Services system. Traditionally, personality disorder has been grossly misunderstood, even by professionals, and individuals suffering from personality disorder were sometimes written off as ‘hopeless cases.' Evidence from a variety of studies shows that this is certainly not the case any longer, and the old attitudes toward mental illness and personality disorder must be put away in order for Social Workers to see that they can make a significant difference to the lives of those with personality disorder and their carers.60 Social Workers need to be educated about personality disorders and have enough experience in dealing with them to be able to identify symptoms in the lives of those they encounter. If they can do this, they can then begin to provide the education and support that is so lacking for carers of people with personality disorder. This study has revealed that
carers and families are crying out for resources and support so that they can help their loved ones to get better. There is now substantial evidence that treatment can result in progress and that providing input for carers can also help sufferers to recover. Social Workers can act as a vital link between carers and families and the services that are available to them.
Despite all that has been done already to provide support to carers in order to increase the likelihood of recovery of those suffering from personality disorders, numerous gaps in the provision of services to carers have been identified in the literature examined. Mental Health and Social Work services should declare their commitment to supporting carers by implementing a budgetary category for carer education. Agencies that support carers in both the private and the public sectors need greater financial support. The content of carer education programmes needs to evolve in order to meet the needs of carers more effectively. Time and resources should be invested in holistic programmes that address a set of core issues in addition to ‘electives' tailored to the exclusive situations in which carers find themselves. More thought needs to be given to the particular stages at which information should be disseminated to particular individuals according to their circumstances. Various groups of carers should be dealt with differently, paying attention to the relationship of the carer to the patient, the individual diagnosis of the patient and the length of time the carer has been in the role. Standards for implementation of carer educations
programmes should be developed and enforced by a carer educational standards body, which should consult carer focus groups to learn more about carer needs. Besides more relevant programmes for carers, initiatives for those who refer carers to available services are also needed. Psychiatrists and GPs need to be encouraged to connect carers to educational and support programmes, especially immediately following patient discharge. In some areas new programmes would not necessarily have to be offered, but access to existing programmes made more open. Ways to disseminate and organise resources for carers should also be examined.There is a need for greater outreach to carers, where social workers and mental health workers take the initiative to search out families and carers of people suffering from personality disorder. With all of the responsibilities already placed upon this population, they often feel too overwhelmed to add one more thing to their long list of tasks. There is also a need to specifically seek out individuals and families from non-English speaking backgrounds, who often feel even more isolated and marginalized than other carers. Despite large strides forward regarding normalisation of mental illness in society, there are pervasive negative and judgmental attitudes in the community which impede the support of carers. These attitudes need to be addressed and awareness raised in order to facilitate a community approach to reducing relapse.There are also a number of further gaps within the services provided that need to be filled in order to offer a more comprehensive service to carers and families. One of those gaps is a lack of programmes for the siblings of those suffering with personality disorder. As mentioned above, extending services to ethnic minorities is an area that requires much attention. Topics absent from educational programmes that would help carers and families include religion and mental illness, nutrition needs and the management of risk. There is a growing awareness that carers need information on a diverse range of topics, more work needs to be done in this area. Specifically, those who deliver psychoeducational and support programmes for carers of people suffering from a mental illness need to consider what topics carers need input on at the various stages in their lives and the lives of consumers. How extensively various topics are covered and who covers them also need reflection. Further, questions regarding whether all service providers should deliver a standard curriculum should be examined.
Yet another gap noted in one study was the absence of diversity in the kind of carers targeted. This has been mentioned previously in the context of ethnicity, but it is also relevant to the type of disorder that the consumer has. The presence of High Prevalence Disorders is distinctly lacking in educational services, as is information pertinent to carers with less common relationships with the consumer.One significant change that is needed to improve the quality of services is greater clinician involvement. Recruiting professionals who are willing and able to commit the time to attend and deliver educational and support programmes is also challenging, as clinicians
would often be expected to hold sessions outside of normal working hours.65 Perhaps incentives should be offered in order to encourage professional involvement and the profile of non-paid work raised. Having said this, many clinicians are already oversubscribed and some of their workload could be reduced by increased delegation within the mental health services. Lack of funding, need for promotion and increased access. Overall, there is a significant body of evidence to illustrate the positive impact that carer education has on carers, which subsequently improves the well being of the people they care for. There are some psycho-educational and support programmes for carers, but they are often delivered in an incoherent manner and there are not enough of them. Carers and family members of people with personality disorders constantly express the need for more programmes of this type and for improved access to the services available to them through the Government and Social Services.
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