REVIEW ARTICLE |
Centre for Suicide Research, University of Oxford
Academic Unit of Psychiatry and Behavioural Sciences, School of Medicine, University of Leeds
Centre for Suicide Prevention, University of Manchester, UK.
Correspondence: Professor Keith Hawton, Centre for Suicide Research, Department of Psychiatry, Warneford Hospital, Oxford, OX3 7JX, UK. Email: keith.hawton{at}psych.ox.ac.uk
None. Funding detailed in Acknowledgements.
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Self-harm is increasingly common in many countries, is often repeated and may have other negative outcomes.
Aims
To systematically review people's attitudes towards clinical services following self-harm in order to inform service design and improvement.
Method
A search of electronic databases was conducted and experts in the field were contacted in order to identify relevant worldwide qualitative or quantitative studies. Data were extracted independently by two reviewers with more weight given to studies of greater quality and relevance.
Results
Thirty-one studies met the inclusion criteria. Despite variations in healthcare systems and setting, participants' experiences were remarkably similar. Poor communication between patients and staff and a perceived lack of staff knowledge with regard to self-harm were common themes. Many participants suggested that psychosocial assessments and access to after-care needed to be improved.
Conclusions
Specific aspects of care that might increase service user satisfaction and treatment adherence include staff knowledge, communication and better after-care arrangements. A standard protocol could aid regular audits of users' experiences of services.
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We have conducted a systematic review of the international literature on people's attitudes to and satisfaction with health services (specifically medical management, in-hospital psychiatric management and post-discharge management) following self-harm in order to inform the development of improved services.
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Research based on quantitative methods was used to provide evidence about the general experiences of a larger population of people who self-harm, with findings from qualitative studies used to extend understanding through the recounting of specific examples and incidents. Data were extracted independently by two reviewers. For studies using qualitative methodology, quotations and themes regarding attitudes and experiences of services were coded using a pen and paper method by a single reviewer (T.T.). The second reviewer (S.F.) extracted data to ensure all relevant quotations and topics were recorded and to reduce possible bias in reporting findings. Similarities and differences between participants' accounts were noted.
The quality of all included studies was assessed independently by at least two reviewers using a combination of the Social Care Institute for Excellence's quality assessment tool11 and the Critical Appraisal Skills Programme's `10 Questions to Help you Make Sense of Qualitative Research'.12 Relevance was assessed using a dichotomous (strong or weak) rating scale. Ratings were only intended to determine relevance to the purpose of this review and do not reflect general relevance.
All studies were included in the review regardless of quality. However, in reporting the results, more weight was given to studies of stronger design. Relevance to the objectives of the review was also taken into consideration.
Included studies
A total of 1014 potentially relevant studies were identified through
electronic searches (Fig. 1).
After further inspection of abstracts, 946 studies were excluded because of
duplications, irrelevance to service users' experiences and study population
(e.g. not all exhibited self-harm behaviour). Overall, 68 studies were
retrieved for detailed evaluation of which a further 37 studies were excluded
on the ground of irrelevance. Thirty-one studies met the inclusion criteria
and were assessed for quality and relevance
(Table 1 and online Table DS1).
Fourteen studies (45%) were rated as having a `strong' or `strong/acceptable'
design, nine (29%) as having an `acceptable' design, and eight studies (26%)
as having an `acceptable/weak or weak' design. Sixteen studies were based upon
service users' experiences in the UK. The other studies were based upon
service users' experiences in North America (n=6), Sweden
(n=3), New Zealand (n=2), Ireland (n=1), Australia
(n=1), Finland (n=1) and The Netherlands (n=1). In
spite of an international literature search, no non-English studies were
found. Service users who had self-poisoned accounted for the majority of
participants in 15 studies. This reflects the fact that most individuals who
self-harm and present to hospital do so after a self-poisoning
episode.1,6
![]() View larger version (15K): [in a new window] [as a PowerPoint slide] |
Fig. 1 Study flow chart.
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View this table: [in a new window] |
Table 1 Quality assessment and relevance ratings of included studies
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Although some service users in studies from the UK10,19 and Sweden (p. 568)20 thought staff were `awfully competent' and `well trained', they also felt that staff often lacked knowledge about self-harm, which participants perceived as contributing to their negative attitudes about people who self-harm. When individuals felt staff did not know about or understand self-harm they were more likely to be perceived as operating on misconceptions about why people self-harm.10,19 Participants also called for sensitivity to possible personal preferences such as the gender of staff providing treatment.
Accident and emergency department
Although 62% of adolescent patients in New Zealand reported a positive
experience in one
study,21 some
service users in the UK felt that they were treated differently from other
patients in accident and emergency (A&E: the term used by participants in
the majority of studies) departments and attributed this to the fact that they
had harmed
themselves:14,22
`They wouldn't touch me... they looked at me as if to say ``I'm not touching you in case you flip on me"... they didn't actually say it, it was their attitude...' (p. 12)14
Many service users interviewed complained that A&E staff were unconcerned with their mental health and concentrated entirely on their physical problems.
`On the occasions I have been admitted to an A&E department they have concentrated on medically patching me up and getting me out. Never have I been asked any questions regarding whether this is the first time I have self-harmed or if I was to do it again or how I intend to deal with it.' (p. 50)23
Waiting room
Wait times were perceived to be too long by many
participants.10,24,25
Long waiting times coupled with a lack of information about their physical
status made some service users anxious and
frightened.25
Positive experiences were associated with being updated and provided with
`regular check-ups' while waiting (p.
16).26
`All they have to say is, we're here if you need us, don't think you're on your own...' (p. 9).14
Some service users also complained that waiting with an often large number of people increased their inability to soothe themselves after a self-harm episode.14 However, service user reactions to being placed in a separate waiting room were mixed.
Physical treatment
Service users' negative perceptions of interactions with staff centred upon
perceived inappropriate behaviours and lack of sympathy (this is the term used
by participants and is probably congruent with the term `empathy' used by
clinicians). Perceived threats and humiliation were common reasons for
negative experiences of physical
management.10
`The last time I had a blood transfusion the consultant said that I was wasting blood that was meant for patients after they'd had operations or accident victims. He asked whether I was proud of what I'd done...' (p. 50)23
Others felt staff threatened to withhold treatment (e.g. anaesthetic during suturing) because their injuries were self-inflicted and/or unless they promised not to self-harm again. Positive experiences of physical management were associated with staff's consideration of patients' psychological situations during physical treatment.
`He... took great pains to suture very neatly – when I commented on this he said "I don't want it to leave any scars" to which I replied that I am covered in them. He said "not on my watch".' (p. 18)26
Psychosocial assessment
Although psychosocial assessment is part of recommended care for people
presenting to hospitals after a self-harm
episode,10,27
many individuals are not
assessed.8,28
Among those who received an assessment, experiences varied. More positive
experiences were described when staff involved individuals in treatment
decisions and explained the reasons for and goals of the assessment.
`The nurse consultant who assessed me was very easy to talk to. She explained everything clearly in a non-threatening way. It felt like a friendly chat. She was great!' (p. 21)26
When an assessor provided individuals with `every opportunity to speak and talk about problems' respondents also reported more positive experiences (p. 21).26 However, several participants perceived the assessment to be superficial and rushed.14,29
`I got the impression that [the psychiatrist] wanted to get it over and done with as quickly as he could and get on with whatever it is he had to do next. There was nothing personal about it.' (p. 16)14
Discharge and referral
Discharge was often described as a negative experience for service users as
many felt ill-prepared to leave hospital, for either physical or psychological
reasons. One participant described being `... out the next morning walking to
the bus stop thinking "what the hell's gone on'" (p.
20).14 Furthermore,
many were unsure of what to expect once they returned home. Several service
users said they had not received referrals for after-care and although contact
numbers for helping organisations were often provided, some felt uncomfortable
initiating their own
after-care.30
Many service users interviewed said that at the time of discharge they were told they would be contacted to schedule after-care.10 However, often they heard nothing further.
`They said they'd get me to see a psychiatrist but I haven't heard nothing from them at all you know, so it's like I've had to cope by myself and I ain't seen no psychiatrist or nothing, no counsellor... I'm still waiting to this day to hear from them, I know I should get on the phone to them but it's not my job really it's their job as well... I do feel let down in a big way, because it feels like all the information now that I've given, that they've just put it to one side and left it.' (p. 21)14
Participants that did receive after-care often faced long waits for psychotherapy.10,30 Half of service users in a Scottish study complained about the delay between discharge and their appointments.30
`I had to wait 12 weeks. A lot can happen in 12 weeks. When the appointment came I was, like, I didn't really see the point.' (p. 5)30
Some individuals interviewed were concerned about how A&E staff determine the need for after-care.10 Overall, the feelings of many people who self-harm are best conveyed by one participant who remarked:
`I was going back to where I started, I felt confused, I thought "what were the point of coming to hospital".' (p. 20)14
Although the majority of people were generally satisfied with their overall treatment, some service users said they would not return to hospital if they experienced another self-harm episode in the future.31
Post-hospitalisation management
The majority of people indicated a willingness to engage in services to
help them minimise
self-harm.30 In a
Canadian study, some individuals welcomed referrals to out-patient care
because they felt they received no support while in
hospital.32
`Yea, I thought that was good because I didn't like the way it was left. I wouldn't like to think that other people are just left hanging. They just sent me off, "are you fine?" "Yes, I'm fine, O.K." and they let me go. I wouldn't have wanted to be admitted because it wouldn't have made things better but you're kind of... left hanging... He was absolutely no good to me... um... the only good thing I got out of that was the social worker so I wouldn't say I minded that my name had been given to somebody because usually if you end up in the hospital like that you're at the end of your rope so I'd think you'd be kind of grateful to get something back.' (p. 9)32
The opportunity to talk about the issues that contributed to their self-harm episode was described by many adult service users as a positive result of after-care.32 Among adults, satisfaction was connected to perceptions of staff behaviour towards patients. Service users were more satisfied with their treatment when they felt their therapist was genuinely concerned about them, respected them and did not try to belittle them.33 In a study examining dialectical behavioural therapy, people were found to be satisfied with their treatment.34
`It has been very, very useful, because there are lots of things that I never really talked about that happened in my past that I'd never been able to face before, and we're actually in the process of starting to work through those things, which I never thought I'd be able to do.' (p. 30)33
Participants who did not attend after-care appointments gave a variety of reasons for their non-adherence. Some participants cited difficulty in understanding referral instructions as a reason for not attending appointments.35 Several did not believe therapy would be beneficial30 and others feared the stigma of seeing a therapist.36
`I hated it. Couldn't stand the psychiatrist... just thought "I must be crazy", that's all that came into my head. That's what I thought, "if you see one of them, you're crazy".' (p. 10)32
One UK study found that individuals unwilling to use after-care services were more likely to have a history of repeated self-harm or feel that they were `beyond help' (p. 4).30
Service users who ended treatment early cited difficulties with therapists (e.g. feeling uncomfortable with the therapist) or feeling uncomfortable with the location of the sessions, that the sessions did not help or that they had got all they could out of therapy.33,35,37 Respondents' perceptions of staff were important to their engagement with care. Crockwell & Burford found that Canadian service users they interviewed placed a lot of responsibility upon professionals, expecting their clinician to `fix them'.32 Therefore, the relationship between client and clinician was an important measure of the quality of care.
Although many service users said after-care had helped them, some individuals had negative reactions to their therapists. Several respondents in an American study complained that their psychiatrist did not help them. One participant described a psychiatrist as `cold, clinical, [and] impersonal' (p. 18).24 Some respondents in a Canadian study said they thought their after-care appointments did not last long enough.
`... when I left he gave me a prescription for antidepressants so we hadn't talked, he didn't once say "it's O.K." or give me any bit of feedback. He just wrote me out a prescription. I'd say I was only in there about 15 min, 20 at the most, and he wrote me out a prescription for antidepressants and sent me on my way.' (p. 9)32
Although service users who completed post-hospital treatment said that the ability to talk to someone about their problems was a valuable aspect of care, many service users in studies from the UK33 and Australia35 found opening up difficult and anxiety-provoking. Several service users found it difficult to open up to someone they did not know.33 Others were frightened that discussing their problems would intensify their distress by bringing back repressed memories.
`... they want to know about my past, and the more I talk about it, the more the flashbacks come back, and the more I cut into my arms. It felt like the counselling was making the self-harm worse, because they want to know every niggly detail to get a full picture. I don't want to go through that again. I've been through it once. I don't need to go through it twice.' (p. 31)33
Adolescents
Adolescents were more positive about after-care. Most welcomed the
opportunity to
talk.31,38–40
Both adolescents and their parents appreciated `talking to someone on the
outside' with whom the family had `no emotional attachment' (p.
84).39 However, not
all were as positive.
`I've talked and stuff and I still don't really feel a hell of a lot better...' Cause, you know, sometimes even just talking about it doesn't really help, sometimes just a hug or something would be cool, more helpful than sitting here talking about it... the talking and things didn't really help me too much. I don't feel that it changes anything... It just seems to scare a person, that's about it.' (p. 85)39
The success of family involvement in therapy or aspects of the treatment approach was often dependent on the relationship between the adolescent and his or her family. Adolescents acknowledged that having a therapist to mediate the discussion allowed them to talk to their parents about issues they found difficult to bring up on their own.
`... it is helpful because there's some stuff you can't really talk about or just having the psychologist there, like having someone else there, there's some stuff that I could talk to my mum about that I couldn't talk to her one on one.' (p. 130)39
However, not all adolescents welcomed family therapy. This was because the presence of parents `inhibits me from fully unleashing' or because they did not want to disclose information to their parents (p. 130).39
`I wanted to be more by myself because there were things I couldn't say in front of my parents... I just wouldn't be able to say that whole thing because I didn't want my parents to know or something.' (p. 130)39
Family therapy also caused some adolescents' anxiety to rise when divorced or separated parents and family members were in attendance. These adolescents found it difficult to participate while worrying about family tensions, although these would often be common goals or material for therapy.
Psychiatric hospitalisation
Generally, individuals admitted to in-patient care discussed feeling a lack
of control. Several individuals in the UK who received in-patient care felt
that they were merely being watched and did not receive any sort of therapy
for their
self-harm.33 Others
viewed hospitalisation as a punishment. Several respondents said that staff
confiscated any object that could be used to self-harm, which increased their
feelings of a lack of control and contributed to the desire to self-harm
again.23,41
In order to counteract this feeling, some suggested that staff give
individuals more responsibility for preventing their
self-harm.33
Participants placed under constant observation while on ward had positive experiences when staff kept them occupied and engaged.42,43 However, the lack of privacy was an important issue and limited the perceived effectiveness of this form of management.
Service improvement
The majority of studies included respondents' suggestions for improving
services for individuals after a self-harm episode which spanned all stages of
care. Five key areas for service improvement emerged.
Increased and improved communication between service staff and those who self-harm
The majority of people called for some responsibility in deciding their
care. Treating individuals with respect, allowing them to participate in
treatment decisions and keeping them informed of their status was very
important to those interviewed in studies in the
UK,33 the
USA13 and
Australia.35
Greater staff knowledge of self-harm and how to deal with people after a self-harm episode
Some service users acknowledged that better information and specific
training on how to deal with people who self-harm might increase
professionals' understanding and interactions with them. It was important that
nurses were `more aware that there's a certain way to deal with people who
self-harm, it's not enough to just be a good nurse' (p.
11).14
Increased sympathy towards those who self-harm
Many service users felt that people who did not self-harm could not truly
understand their
experiences.33
Participants explained that they did not always want understanding but wanted
to be listened to and not judged. They hoped that staff would `... listen and
respond in a natural way – showing concern and wanting to support you'
(p. 69).23
Improved access to local services and after-care
The need for more mental health professionals working in hospitals and
local facilities to decrease waiting times was highlighted by respondents.
Many study participants were unaware of local services that provide support to
individuals who
self-harm.44 They
often urged professionals to provide people with more information about local
formal support services and how to contact
them.23,33
`Having arrived at A&E late at night, I had to wait until early the following morning before seeing a psychiatrist.' (p. 21)26
Participants felt it was essential that services be as accessible as possible by being staffed 24 h a day and providing walk-in services.33 It was also suggested that services offer alternatives to hospital such as having nurses who can treat self-inflicted wounds working in the community.23,33
Provision of better information about self-harm for patients, carers and the general public
Individuals who self-harm do not always understand what is happening to
them or why they do it. Furthermore, because self-harm is shrouded in stigma,
many people may feel they are alone. Many service users suggested that more
information be provided to them about self-harm and its prevalence.
`Information on how common self-injury is would be helpful. I used to feel abnormal and weird as I thought I was the only person to do this. Information could have helped reduce the shame and isolation this caused me.' (p. 27)24
Support and information for carers was also suggested by individuals who self-harm and their friends and families.33 Better information for the general public was also called for to help alleviate some of the stigmatisation faced by individuals who self-harm.33
Adolescents
Recommendations for improvement from youth with a history of self-harm were
similar to those from adults. However, specific needs were identified such as
the inclusion of adolescents in planning services, walk-in and telephone
services, central location of facilities and specialised training for staff
working with this
population.31,35
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The findings should be considered in the light of several potential limitations. First, the included studies used a variety of methodologies which make it somewhat difficult to compare studies. For example, some qualitative studies included open-ended or semi-structured interviews that make it difficult to say precisely how many people experienced a particular event or had specific attitudes or perceptions about services as interview questions may have evoked different memories from respondents and caused some to leave out particular details. Second, publication bias may also contribute to greater emphasis on negative findings and limit generalisability. We have attempted to get around this by searching the unpublished literature. Unfortunately, only one study was found using this strategy.39 The possibility of researcher bias also exists. In synthesising already synthesised findings, unintended consequences that may be influenced by the background of the reviewers can occur. This review has been undertaken by four authors from both clinical and non-clinical backgrounds with varying experience in the clinical management of individuals who self-harm and conducting qualitative research. We believe that the heterogeneity of the authors' experiences has limited the potential biases in the interpretation of the findings. Lastly, the quality of the studies included in this review (Table 1) may also limit the generalisability of the results. Although in presenting the results we gave more weight to the studies of stronger design, the inclusion of all the studies could have influenced the findings.
A strength of this review is that we were able to pool the findings from 31 studies from several countries. The range of countries included provides an international understanding of the experiences of individuals who self-harm. This review has also allowed for an examination of many aspects of care and the different services used by individuals after a self-harm episode. This enables us to provide recommendations regarding management in general, specific services and the transition from one service to another (e.g. between discharge from the general hospital and after-care).
This review has focused on user attitudes and perceptions, a fuller picture of what happens in patient–staff interactions would be provided by a similar study of staff attitudes and reaction to individuals who self-harm. Such a review is currently in progress.
Implications
Investigating service users' experiences of care is integral to improving
the management of people who self-harm and to the possible prevention of
self-harm and suicide. Self-harm service users' suggestions need to be
considered in the context of government and professional recommendations
regarding the management of people who self-harm in order to provide
suggestions for how management can be improved for individuals presenting to
hospital after a self-harm episode. The findings of this review should further
influence national and other guidelines.
Suggestions for clinical practice and service improvement
Services for individuals following a self-harm episode should be
accessible, personal and effective. Improved access to emergency and local
services might include better advertisement for services aimed at individuals
who self-harm and the development of an after-care plan upon discharge from
hospital to ease the transition from hospital to out-patient care. Increased
operating hours and a location easily accessible by public transport might
also improve access to local services.
The therapeutic relationship is an important tool in improving treatment adherence and patient outcomes. Due to the nature of the treatment, establishing rapport with the client could have a significant impact on individuals' perceptions of the quality of their care. Additional steps to personalise care could include engaging people in treatment decisions and considering their personal preferences. Maximising the therapeutic benefits of the psychosocial assessment and ensuring individuals are well enough for discharge could increase treatment adherence.
There is marked variation in the type and quality of services available to people presenting to A&E after a self-harm episode.8 Many issues including a chronic shortage of doctors and nurses and high staff turnover may have an impact on the quality of care. In order to decrease the variety and increase the quality of care provided, hospitals might establish a self-harm planning group to address issues such as staff training and management protocols. Regular assessment of patient outcomes may increase the effectiveness of services.
In designing services for adolescents presenting at A&E, attention should be paid to the recommendations discussed above. However, services might consider implementing a protocol specific to adolescents and the inclusion of carers in management (but accounting for the age-appropriate consent issues). It is important that professionals providing therapy to adolescents either individually or as a family are sensitive to possible tensions that may undermine engagement or the success of therapy.
Older adults generally show greater suicidal intent when compared with younger populations and risk of death by suicide following self-harm is highest among this group.2 There should be specific guidelines for service provision and clinical management of this group.
Future research
Future research might include the development of a standard interview
schedule to assess service users' perceptions of care and would help make
studies more easily comparable and could be used for regular audit of
services. The schedule should include: individual's satisfaction with physical
treatment, psychosocial management (including psychosocial assessment),
discharge, referral and after-care, and perceptions of and satisfaction with
staff. This interview schedule may also be used in conjunction with open-ended
or semi-structured interviews to allow for a more client-centred discussion.
Studies evaluating the impact of psychosocial assessment and service users'
attitudes towards specific treatments are required. Further research might
address the large gap in the literature regarding the experiences of older
adults and minority groups. Evaluation of training for staff and of the impact
of training on individual's perceptions of services is needed. Finally, in
order to better assist those caring for people who self-harm, larger studies
examining the impact of self-harm on relatives, and their role in management
and its effects, might be conducted.
This review provides some indication of how services might be improved to better meet people's needs following a self-harm episode. Although more research is needed to strengthen our understanding of service users' needs and address the issues of specific subgroups, the findings of this review provide some clear directions for service improvement.
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