The Information Needs of Suicidal People and their Significant Others: a Review of the Literature
SummaryThere is an apparent dearth of empirical research available addressing the information needs of those who attempt suicide and their significant others. Very little research focuses on the development of an evidenced-based way of delivering relevant, accessible and timely information to this unique cohort. What is evident from the existing literature is that people cast in the role of caring for someone who is suicidal and/or mentally ill often experience considerable psychological burden. Supporting the well-being of carers would potentially be beneficial to both the carer and the person requiring care. This is particularly relevant in the case of the suicidal person where social context and access to social support networks are key elements underpinning recovery. The existing literature is largely qualitative in nature however this empirical medium facilitates the capturing of subjective narrative and lived personal experience. After all living with suicidal thoughts or with a loved one who is suicidal is a wholly subjective experience. Any information which helps a sufferer or their significant others to manage and cope with the impact of the experience is eminently worthwhile in the authors’ opinion.
IN THIS piece the authors also wish to examine the literature from related fields of empirical enquiry. Material pertinent to the care give to significant others of those who commit or attempt suicide will be addressed alongside literature relating to the onerous task of caring for someone who is mentally ill.
Magne-Ingvar and Ojehagen (1999) followed up the significant others of 84 suicide attempters. This qualitative analysis utilized semi-structured interviews to elicit the opinions of the subject group. Results indicated that 63% of those who had attempted suicide had mental health problems and 80% of the sample cited more socially based issues, for example, relationship worries, financial worries or problems with substance misuse. This study revealed that significant others experience considerable anxiety about the potential repetition of their relative’s self-harming behaviour. Despite this 42% of them had never talked to their relative about the self-harm in the intervening year. A need for more information was expressed, however it seems that the sample of significant others were apparently unable or unwilling to directly approach their relative on the subject of self harm. Furthermore 20% of those who has attempted suicide had not spoken to anyone about the event.
Almost half of these significant others would have liked professional input of some sort preferably very soon after the event. Almost the entire sample found the process of being professionally interviewed as supportive. In this study the researchers also compared the views of those who had attempted suicide with the views of their significant others. On many occasions there was a disparity between the patient’s version of events and that of their significant others. It seems that the act of attempting suicide negatively impacted on the capacity of either group to access their social support networks. The most significant finding here was that the majority of respondents found they were not given enough information and were not sufficiently involved in the treatment of their relative. Magne-Ingvar and Ojehagen (1999) concluded that offering support and information to significant others may ease their burden of stress and enable them to support the patient appropriately. This study was limited by the fact that the interviews were conducted by telephone. It may be that a clearer picture of the needs of significant others could have been achieved via face-to-face contact.
Nirui and Chenoweth (1999) conducted a small qualitative study focusing on the family and close friends of 15 young people who took their own lives. Lack of information about suicide and its associated risk factors not being readily available was a common theme. The respondents often found that the people they turned to for information, in particular their General Practitioners were unable to supply it. The significant others interpreted this lack of information as a lack of interest and concern on the part of their doctor and was seen as a significant barrier. This communication opportunity with a hitherto trusted health professional had the potential to ease the suffering of those were bereft by suicide. One respondent talked emotively about the guilt and shame she experienced in the wake of her son’s suicide which so easily could have been avoided by furnishing her with the right information at the right time.
For the participants in this study their relationship with someone contemplating or committing suicide placed them in the unpleasant position of not knowing how to give or secure help for their relative. A key theme in the study was the notion that people become suicidal in their unique social contexts yet existing services made little attempt to help the suicidal individual by providing adequate information to relatives. Nirui and Chenoweth (1999) conclude by making a number of recommendations intended to minimize negative experiences for those at risk of suicide and their significant others: Included in their recommendations was the need to educate relatives and society in general about the risk factors associated with suicide.
Providing information to those who attempt suicide and their significant others may offer a protective function for both parties. One obvious advantage would be that if a significant other receives appropriate information they may feel less stigmatized by their relative’s suicidal behaviour. Relatives of people with mental illnesses do sometimes feel stigmatized. Ostman and Kjellin (2002) established that the majority of relatives experienced some degree of stigma by association. The impact of a suicide prevention education programme delivered to parents of high school students was measured by Toumborou and Gregg (2002). The positive effects of educating carers was apparent in that a reduction in risk factors for suicide was achieved simply by offering information to those already within the social network of the school children. We must aim towards making information about suicide as widely available as possible. Providing adequate information to relatives may go some way towards preventing them from themselves becoming ill. Being a carer can be a stressful experience. There is also evidence to suggest that having a relative who attempts suicide is a risk factor for suicide in itself (Blaauw et al, 2002).
Eagles et al (2003) developed and administered a semi-structured interview schedule with the aim of eliciting mentally ill patients’ views on suicide prevention. While most of the patients declared that contact with professionals was helpful, the results also indicated that enhancing the patient’s social networks and reducing stigma might also be useful. It may be that providing accessible, high quality, widely available information about managing suicidal thoughts could address these perceived needs particularly in light of the large numbers of suicidal people who are not accessing professional help.
The needs of people who have attempted suicide or had suicidal thoughts were investigated by pirkis et al (2001). A clustered probability sample was identified and the data gathered by trained, non-professional researchers. This strategy may have been highly facilitative in encouraging people to talk openly about their experiences with professionals. Both groups of respondents evidenced similar experiences in terms of their information needs. Around 50% of both groups expressed some need for information and 50% felt their needs went unmet (n-1326).
Young people are increasingly associated with suicide. Coggan et al (1997) used a qualitative methodology involving focus groups to elicit the views of young people on the subject.
The young people were affiliated with schools and technical colleges and ranged in age from 15 through to 25 years. Twelve groups in total were facilitated by one trained facilitator. The results indicated that most of the young people said they were more likely to turn to a friend or peer for help as opposed to family members. The provision of information in the form of posters or pamphlets was also viewed as positive in that it allows for the anonymous accessing of information. There was general agreement that any attempt to make the subject of suicide less taboo was broadly welcomed but there was concern that it should not be “glamorized” or “normalized” in any way. Glamorization could lead to suicide being interpreted as attractive in some way. Equally normalization may result in some individuals not seeking the professional help they need. The sample of young people generated what they considered to be warning signs of impending suicide namely, personality changes, risk taking behaviours and unusual actions. These participants also highlighted that lack of information is a barrier to the successful accessing of relevant services and other resources. There are considerable clinical implications for health professionals of all disciplines pertaining to the way in which they provide and present the information.
Mann et al (2004) describe the critical role that poor self-esteem has in the development of mental illness and its underpinning of high risk behaviours. They go on to say that improved self-esteem is positively correlated with developing more effective coping strategies. There is also evidence that low self-esteem is associated with suicidal behaviours (Overholser et al, 1995). The Government recognizes the need for high quality carer-focused information (Department of Health, 1999). This document acknowledges that carers often found it difficult to access information needs.
Sung et al (2004) compared the psycho-educational needs of patients and relatives in the pre-discharge phase of a psychiatric inpatient admission. For patients and their relatives information needs about medication, ways of managing stress and coping with suicidal thoughts were among the top ten topics identified. Chien et al (2003) looked at the educational needs of families of schizophrenia sufferers. The needs highlighted included information about early warning signs of relapse or illness and the effects of medication. In a qualitative study exploring the emotional and support needs of family carers, Chambers et al (2001) found that the experience of caring was one of constant searching for information and support. Nurses were seen as key figures in helping carers access the relevant information.
The education needs of families of mentally ill adults were examined by Gasque-Carter and Curlee (1999). They noted that mental health services do not generally engage with families of people with mental illness despite the fact that families often fill supportive gaps in service delivery. The authors of this piece state that although families can provide a wealth of first hand experiential knowledge of the patient, they are under-utilized at the assessment stage and give little factual information about their relative’s presentation. The caregivers in this study cited professionals as being best placed to meet their education and information needs. Some 66% of the sample said they needed information about the signs and symptoms of mental illness. The single greatest need however was information on how to engage health professionals effectively in their role as advocate for an ill relative. Professionals often cite concerns about patient confidentiality as a barrier to talking to relatives about various issues and problems. Alternative ways of delivering information in a non-threatening fashion should therefore be sought.
The information needs of other mental health client caregivers are represented in the literature albeit sparingly. Wackerbarth and Johnson (2002) attempted to identify the information and support needs of caregivers of dementia sufferers. The data in this study was gathered via a selfadministered semi-structured survey. The information seen as essential by these caregivers included how to find the best care and what to expect from their relatives in light of their illness. It is perilously easy to overwhelm caregivers with information and therefore greater attention should be paid to the accessibility and quality of the information offered.
In a qualitative study using the focus group approach, Boyle and Chambers (2000) looked at medication compliance in older depressed people. They purport that information about the illness and its treatment is a primary need for the patient and their relatives. Carers are often expected to facilitate medication compliance based on very little knowledge. Lack of information was seen as a barrier to compliance. Furthermore, the accessibility of information was singled out as vital. The information provided in medication leaflets was viewed by this sample as unhelpful due to the way in which the material was presented. They felt this was likely to cause alarm and actually militate against compliance. Doornbos (2001) studied the experiences of caregivers of young adults with serious mental illness. An important need expressed by caregivers was for information about the illness and the resources available with which they could prepare themselves for their caring role.
Cujipers and Stam (2000) looked at burnout in relatives of psychiatric patients who were attending education groups. The findings in this case strongly suggest that information aimed at helping relatives to cope with relationship strain had the potential to reduce the burden on relatives. Providing appropriate information for carers has long been essential especially since carers are expected to be effectively engaged in caring and maintaining their own physical and psychological well-being. The King’s Fund Audit for Carers (1988) states that carers require detailed knowledge concerning diagnosis, progress and prognosis.
Chien et al (2001) studied the specific educational needs of patients with schizophrenia by adapting a recognized survey tool for use with this population. They concluded that assessment of mental health consumer’s unique educational needs was essential adding that specific strategies should be developed to meet those needs. It must be remembered that the expressed needs of various mental health service user groups can vary significantly. Meusser et al (1992) for example elucidated the educational needs of people with affective disorder and found they most valued information on how to cope with stress and manage suicidal thoughts. As Soren Kierkegaard (1813–1855), a 19th century Danish philosopher asserts:
“Nowadays not even a suicide kills himself in desperation. Before taking the step he deliberates so long and so carefully that he literally chokes with thought. It is even questionable whether he ought to be called a suicide, since it is really thought which takes his life. He does not die with deliberation but from deliberation.”