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Background: Members of the general public often lack the knowledge and skills to intervene effectively to help someone who may be developing a psychotic illness before appropriate professional help is received. Methods: We used the Delphi method to determine recommendations on first aid for psychosis. An international panel of 157 mental health consumers, carers, and clinicians completed a 146-item questionnaire about how a member of the public could help someone who may be experiencing psychosis. The panel members rated each questionnaire item according to whether they believed the statement should be included in the first aid recommendations. The results were analyzed by comparing consensus rates across the 3 groups. Three rounds of ratings were required to consolidate consensus levels. Results: Eighty-nine items were endorsed by ≥80% of panel members from all 3 groups as essential or important for psychosis first aid. These items were grouped under the following 9 headings: how to know if someone is experiencing psychosis; how to approach someone who may be experiencing psychosis; how to be supportive; how to deal with delusions and hallucinations; how to deal with communication difficulties; whether to encourage the person to seek professional help; what to do if the person does not want help; what to do in a crisis situation when the person has become acutely unwell; what to do if the person becomes aggressive. Conclusions: These recommendations will improve the provision of first aid to individuals who are developing a psychotic disorder by informing the content of training courses.
A number of research studies have focused on the importance of reducing the duration of untreated psychosis (DUP) to ensure optimal recovery in psychotic disorders.1,2 Two recent meta-analyses of the association between DUP and outcome in individuals experiencing first-episode psychosis found that length of DUP had a significant impact on a range of outcomes.3,4 A longer DUP was associated with worse outcomes on depression/anxiety, positive and negative symptoms, and social functioning. Although these correlational studies cannot show that a longer DUP is the cause of the worse outcomes, they support efforts to explore the potential benefits of early intervention.
In response to such evidence, some researchers have turned their attention to the pathways to care experienced by these patients. Singh and Grange5 argue that understanding how individuals negotiate pathways to care is paramount, as factors that enhance or hinder help seeking ultimately help determine whether early intervention programs are successful or not. Family and friends can be important facilitators of pathways to professional care6 as they are in a unique position to observe changes in an individual's behavior and level of functioning. Because of this proximity, they may be the first to recognize the development of a psychotic episode in someone they care about. Despite the crucial role that family and friends may play in early intervention, many supporters lack the knowledge, skills, and resources to enable them to intervene effectively.
To empower family and friends with the confidence and knowledge to intervene when someone they care about may be developing a mental illness, Kitchener and Jorm developed the world's first Mental Health First Aid (MHFA) course based on the model applied to physical first aid. MHFA is defined as the help provided to a person developing a mental health problem or in a mental health crisis. The first aid is given until appropriate professional treatment is received or until the crisis resolves. The 12-h MHFA course trains members of the public to give early help to people developing a mental disorder (including psychotic disorders) and to give support in mental health crisis situations (such as assisting someone who is suicidal).7 There is an associated course manual8 that can be downloaded for free from http://www.mhfa.com.au.
Several trials have been conducted to evaluate the effects of the MHFA course. An initial uncontrolled evaluation with members of the public showed that the course improved recognition of mental disorders, changed beliefs about treatments to be more like those of health professionals, reduced stigmatizing attitudes, increased confidence in providing help, and increased the amount of help provided to others.9 Additionally, randomized control trials have been carried out with employees in a workplace setting and with members of the public in a large rural area.10,11 In comparison to wait-list control groups, the trained groups showed greater confidence in providing help to others, improved helping behavior, greater concordance with health professionals about treatment and decreased social distance from people suffering from depression. The MHFA course has been widely disseminated in Australia and has been adapted by a number of other countries, including Scotland, England, Ireland, Hong Kong, Canada, Singapore, and Finland.
Although the MHFA course content is designed to be as evidence based as possible, there is very little empirical evidence on pre clinical interventions for developing mental disorders. Accordingly, there is limited knowledge about how a layperson can best help someone who may be developing a mental disorder. While randomized control trials provide the highest standard of evidence, it is not feasible or ethical to carry out such trials to evaluate MHFA strategies. In such situations, expert consensus provides an alternative. The aim of the present research was to develop recommendations for first aid for psychosis using the expertise of mental health consumers, carers, and clinicians. This research is part of a broader project to develop first aid recommendations for developing mental disorders and mental health crises. Results of a consensus study on depression first aid recommendations have already been published.12
To survey expert opinion, we used the Delphi method which involves a group of experts making private, independent ratings of agreement with a series of statements.13 A summary of group ratings is fed back to the panel members who then complete a second round of rating. They can choose whether to change or maintain their original ratings. Several rounds may be required, depending on the desired level of consensus. The output from the process is statements about which there is substantial consensus in ratings.
We recruited mental health consumers, carers, and clinicians from Australia, New Zealand, the United Kingdom, Ireland, the United States, and Canada. To recruit consumers and carers, we approached mental health organizations (eg, Association of Relatives and Friends of the Emotionally and Mentally Ill in Australia, Rethink in the United Kingdom) to request that they distribute information about the study to any consumers (who had experienced psychosis) and carers (who had looked after someone with a psychotic illness) who may want to participate in the study. We specified that any consumers and carers who took part needed to feel comfortable reflecting on their experiences with psychosis, and as a result, the project was particularly appropriate for consumers and carers in publicly visible roles (eg, those who were working in advocacy positions or with support groups). We also approached consumers and carers in the public domain who had authored books, articles, or Web sites about their experiences with psychosis to invite them to participate. The clinical experts approached were international authorities on psychosis, as well as mental health clinicians working within clinical settings. Each potential participant was sent an information sheet about the study. Once they had agreed to participate, written informed consent was obtained from each panel member by e-mail or letter. In some cases where the participants did not have access to e-mail, consent was obtained via the telephone. Panel members were given the option of completing the questionnaires online using SurveyMaker (surveymaker.com.au), via e-mail or by paper mail. See figure 1 for the number of panel members who completed each round. This project received Ethics approval from the Human Research Ethics Committee at the University of Melbourne.
A systematic literature review was conducted of Web sites, books, carer and consumer manuals, and journal articles for statements about how to help someone who may be developing a psychotic episode. This involved a comprehensive internet search using 4 different search engines (Google, AlltheWeb, MetaCrawler, and Yahoo). The following search terms were entered into each search engine: psychosis, first-episode psychosis, schizophrenia, help for psychosis, help for schizophrenia, psychosis family friends, schizophrenia family friends, psychosis carer, schizophrenia carer, help for hearing voices, help for hallucinations delusions, psychosis violence, what to do psychosis violence, family + psychosis + violence, psychosis + “doesn't want help.” The first 50 sites for each set of search terms were examined for statements about how to help someone who is or may be experiencing a psychotic episode. This technique yielded a total 300 sites per search engine. Any links that appeared on these Web pages that the authors thought may contain useful information were followed. To locate relevant journal articles, the following databases were searched: PsycINFO, PubMed, CINAHL, Medline, and Google Scholar. Key texts were identified through library searches, recommendations from relevant mental health Web sites, and http://Amazon.com.
The information gathered from these sources was analyzed by one of the authors (R.L.L.) and divided into sections based on common themes. A working group discussed this document and created individual questionnaire items to best represent these themes. We attempted to remain as faithful as possible to the original wording of the information but had to modify some wording to ensure comprehensibility and consistency of format across items. After several draft questionnaires, the group reached consensus on 146 items that formed the first questionnaire sent to panel members. The questionnaire items were organized under the following 8 subheadings: recognizing and acknowledging that someone the first aider knows may be experiencing psychosis (6 items); how to encourage someone who may be experiencing psychosis to seek professional help (12 items); how to help someone who may be experiencing psychosis seek professional help (6 items); how to interact with someone who may be experiencing psychosis (21 items); how to interact with someone who is experiencing symptoms of psychosis (29 items); how the first aider should respond in a crisis if the person they are helping becomes acutely psychotic (28 items); how to respond if the person the first aider is helping becomes aggressive (19 items); how to interact with someone who may be psychotic, if that person denies that they are unwell and refuses to get help (25 items). After each set of questions, panel members were asked whether they had any comments to add about that section.
The panel members were asked to rate each questionnaire item on a 5-point scale (1 = essential, 2 = important, 3 = do not know/depends, 4 = unimportant, 5 = should not be included) according to how important they believed it was as a potential MHFA standard for psychosis. They were asked to keep in mind that the standards will be used by the general public, and as such, the statements needed to be rated according to how important each one was as a way for someone, who does not necessarily have a medical or clinical background, to help a person who may have psychosis.
The survey responses were analyzed by obtaining group percentages for the consumers, carers, and clinicians for each item. The following cut-off points were used:
To analyze the comments that panel members had written following each section, one of the authors (R.L.L.) read through all the comments and divided them into sections based on common themes. The working group evaluated the comments to determine whether they were original ideas that had not been included in the first round of the survey. Any comment that was judged by the group to be an original statement was included as a new item to be rated in the second round of the survey.
See figure 2 for an overview of the numbers of items that were included, excluded, and rerated in each round of the survey.
One hundred and fifty-seven panel members from Australia (12 consumers, 33 carers, 20 clinicians), New Zealand (4 consumers, 5 carers, 6 clinicians), the United Kingdom (15 consumers, 11 carers, 14 clinicians), Ireland (2 clinicians), the United States (5 consumers, 5 carers, 3 clinicians), and Canada (9 consumers, 6 carers, 7 clinicians) took part in the first round of the survey. Out of these 157 panel members, 110 (70.1%) were female (71.1% of the consumers, 78.7% of the carers, and 54.5% of the clinicians). Out of the 52 clinicians on the panel, there were 7 Psychiatrists, 20 Psychologists, 1 Counsellor, 14 Occupational Therapists, 2 General/Medical Practitioners, 7 Nurses, and 1 Mental Health Support Worker. The median age category was 40–49 years for both the consumers and the clinicians and 50–59 years for the carers. The response rate for the first round of the survey was 80.1% (consumers = 75%, carers = 90%, clinicians = 75.4%); thirty-nine people who agreed to participate in the study did not complete the questionnaire (15 consumers, 7 carers, 17 clinicians). Eight of the participants began filling in the questionnaire but did not finish it (2 consumers, 1 carer, 5 clinicians).
Out of the 146 items included in the first round of the survey, 66 were rated as either essential or important by ≥80% of the consumer, carer, and clinician panel members. Fifty-two items were excluded and 28 items met the criteria to be rerated in the second round. Sixty-five new items were created from the panel members’ comments. A 93-item questionnaire was developed for round 2, which was comprised of the 65 new items as well as the 28 items to be rerated. This second questionnaire did not include any space for comments.
Before they were asked to complete the second round of the survey, each of the panel members was sent a copy of a report that described how the results had been analyzed. This report also contained a list of the items from the first round to be included and excluded from the first aid recommendations, as well as the group percentages of the ratings for each of these items to be rerated in the second round. Panel members were also sent a copy of their original questionnaire responses to enable them to compare their responses for the items to be rerated to the group responses. They were then able to choose whether to maintain or modify their ratings for those items in the second round of the survey.
In the second round of the survey, 16 of the 93 items met the criteria for inclusion in the first aid recommendations, 50 items were excluded, and 27 items reached the consensus level which required rerating in the third and final round. One hundred and seventeen panel members completed the second round (74.5% of those who took part in the first round). Of these 117 participants, there were 33 consumers (73.3%), 43 carers (71.7%), and 41 clinicians (78.8%).
Each panel member was sent a report detailing the results from the previous round, along with a copy of their round 2 questionnaire results. One hundred of the original 157 panel members completed the final round giving a response rate of 63.7% (consumers = 68.9%, carers = 61.7%, clinicians = 61.5%).
A sum total of 89 items from the 3 rounds were rated as essential or important by ≥80% of the panel members in each of the 3 groups. The authors grouped items of similar content under specific headings to make the recommendations more comprehensible (see table 1).
To the authors’ knowledge, no previous studies have sought the expert opinions of mental health consumers, carers, and clinicians in regards to how to help someone who may be developing psychosis. Considering the diverse roles occupied by the panel members in this study, they were able to agree on a surprising number of statements covering a broad range of areas.
One of the strengths of this study was that panel members were able to submit comments after each section in the initial questionnaire. This enabled us not only to draw on the panel's experiences through their consensus ratings but also to utilize their expertise by developing new items from their comments. This process ensured that we did not overlook any pertinent issues and yielded 65 new items to be rated in the second round of the survey. For example, the items in the first section on recognizing and acknowledging that someone may be experiencing psychosis were all highly endorsed by the panel members; all 6 items achieved sufficient consensus in the first round to be included as first aid recommendations. However, many of the panel members had concerns with the concept of early warning signs because they are often very difficult to interpret. As such, they may signal a variety of conditions or conversely may not indicate a disorder at all. Several panel members stressed the importance of first aiders getting the balance right by being able to recognize what might be early signs or symptoms of psychosis but also being careful not to become hypervigilant. One of the consumers who had experienced this hypervigilance commented on how oppressive it can be. To incorporate these concerns into the questionnaire, we developed the following item: “The first aider should exercise caution in how they react to or interpret potential warning signs as the person they are helping may not develop psychosis.” Interestingly enough, this item did not achieve sufficient consensus to be included in the final first aid recommendations.
The comments also provided us with insight into how panel members’ roles influenced their ratings. This was apparent in the section on how the first aider should interact with someone who either denies that they are unwell or refuses to seek help. In this section, several of the items explored whether the first aider should seek appropriate professional help or advice on behalf of the person they trying to help. These items were more strongly supported by the carers than by the consumers or clinicians. For example, 61% of carers, 41.9% of consumers, and 29.8% of clinicians rated the following item as essential or important: “If the person cannot understand they are unwell and refuses to see a doctor, the first aider should make an appointment with a doctor to discuss their specific concerns and what can be done.” Although this item was not endorsed by all the carers, it can be hypothesized that it was more strongly supported by carers because of their frustration with dealing with loved ones who lack insight into their illness. One of the carers commented that, “The right to sanity should exceed the right to choose no treatment.” In contrast, the predominant theme running through the clinicians’ comments on this section related to maintaining the person's privacy and confidentiality, while many of the consumers were concerned about the person's right to decide not to seek help if they are not at risk of harming themselves or others.
The emphasis of these recommendations is on assisting a person who is beginning to show positive symptoms. However, it is known that positive symptoms are usually preceded by negative symptoms and functional impairment, which in turn are generally preceded by depressive mood.14 Early intervention may require that the affected person receive help at these earlier stages, not just when positive symptoms develop. While it is too much to expect that a member of the public could detect more subtle changes indicating a psychotic disorder, they are able to respond to depression. We have also developed depression first aid guidelines using a similar Delphi consensus methodology.12 These recommendations may be useful either where a depressive disorder is developing or where the person is in the very early stages of a psychotic disorder. Work is also underway to develop first aid recommendations for a number of other developing disorders and mental health crises, including how to help a suicidal person or someone who is deliberately injuring themselves.
A limitation of this study is that these recommendations may not be applicable to non-English speaking, non-Western countries. We decided not to include panel members from such countries because of the potential for culturally diverse interpretations of psychosis. We were also aware that individuals from many of these countries do not have access to the healthcare systems mentioned in some of the items. We are planning to conduct further studies into MHFA recommendations that are applicable in these countries.
As mentioned earlier, despite the different experiences of the panel members, we were able to obtain a high degree of consensus on a large number of items. As a result, these recommendations are distinct from much of the information currently available in the public domain about how to help someone who may be developing a psychotic disorder because they have been endorsed by a large number of mental health consumers, carers, and clinicians. These recommendations will be used to determine the content of MHFA training courses and could potentially lead toward first aid for psychosis being accredited in a comparable manner to that of physical first aid.15 They will also help friends and family to provide the best possible support to loved ones who may be experiencing psychosis.
National Health and Medical Research Council Program (grant 179805); an Australian Rotary Health Research Fund grant; Infrastructure support from the Colonial Foundation.
The authors would like to thank all the panel members for their time and contributions to this research. We would also like to thank Len Kanowski and Amy Morgan for their helpful comments.