How many people are actually dying because they're lost in a system that either doesn't work or, quite frankly, I think is not actually in place. (Jane)
Child suicide arguably remains a somewhat taboo topic, and one that has been little researched. There has traditionally been a presumption that children did not understand what suicide was and, consequently, could never then be suicidal (see Soole, Kõlves, & De Leo, Reference Soole, Kõlves and De Leo2014a). However, Mishara (Reference Mishara1999) demonstrated that 8-year-old children understood what suicide meant, and that some 6-year-olds knew similar concepts (e.g., killing oneself) even if their understanding of what death meant was still immature. Further, a child's intent around their self-injurious action has been argued to be more important than whether the method used has the potential to be fatal (Tishler, Reiss, & Rhodes, Reference Tishler, Reiss and Rhodes2007). Studies have also found that, as with adults, previous suicide attempts are a significant risk factor for further suicide attempts and eventual suicide death (Soole, Kõlves, & De Leo, Reference Soole, Kõlves and De Leo2014b; Freuchen, Kjelsberg, Lundervold, & Grøholt, Reference Freuchen, Kjelsberg, Lundervold and Grøholt2012). However, in a recent psychological autopsy study, parents only recognised symptoms of depression and suicidality after the death; at the time, they did not see anything that they felt warned them of the suicide that was to come (Freuchen et al., Reference Freuchen, Kjelsberg, Lundervold and Grøholt2012).
What the studies undertaken to date have so far demonstrated is that children can become suicidal and eventually die by suicide, even if their actions are not initially taken seriously (see Tishler et al., Reference Tishler, Reiss and Rhodes2007). With this limited understanding, we are only beginning to identify and unpack the risk and protective factors unique to child suicidality and how to best support children who are suicidal, either within familial, educational, or healthcare environments. However, in recent Australian research (Shand et al., Reference Shand, Christensen, Pirkis, Spittal, Batterham, Woodward, Tighe and McKay2015), children experienced significant difficulties in accessing appropriate care after a suicide attempt. The response of the health system post-discharge has consistently been found to be critical in terms of vulnerability to a further suicide attempt (Meehan et al., Reference Meehan, Kapur, Hunt, Turnbull, Robinson, Bickley and Appleby2006).
While there is very little literature on the health service experiences of children and adolescents following a suicide attempt, adult patients have reported both positive and negative aspects of treatment following an episode of self-harm or attempted suicide (Taylor, Hawton, Fortune, & Kapur, Reference Taylor, Hawton, Fortune and Kapur2009). Some inpatients reported a sense of care, acceptance and security, where staff represented the hope that they could not muster on their own behalf (Samuelsson, Wiklander, Asberg, & Saveman, Reference Samuelsson, Wiklander, Asberg and Saveman2000). Others perceived staff as uncaring or lacking respect and empathy, and lacking knowledge about self-harm (Carrigan, Reference Carrigan1994; Samuelsson et al., Reference Samuelsson, Wiklander, Asberg and Saveman2000); did not receive after-care referrals or were expected to initiate the after-care process themselves; or did not receive promised follow-up contact (Taylor et al., Reference Taylor, Hawton, Fortune and Kapur2009). A study of adolescents presenting to hospital following a suicide attempt found that only two thirds received a psychiatric assessment, and documented follow-up recommendations were made in 60% of cases (Bolger, O'Connor, Malone, & Fitzpatrick, Reference Bolger, O'Connor, Malone and Fitzpatrick2004).
To date, families have rarely been included in the research around child suicidality (Taylor et al., Reference Taylor, Hawton, Fortune and Kapur2009), other than being listed as a risk factor when considered dysfunctional. Yet, families are the most direct social contact that a child will arguably have outside a school system, and so their influence (both positive and negative) on suicidality should not be ignored. In Australia, little research has been done on how a family dynamic works when a child is suicidal and what most effectively helps in supporting a child during the crisis, and after discharge from acute care. Further, there is little understanding as to how caring for a suicidal child affects the person providing care, whether a parent or guardian.
The Care After a Suicide Attempt (CAASA) study — undertaken by the Centre of Research Excellence for Suicide Prevention (CRESP), and commissioned by the National Mental Health Commission — was one of the first studies in Australia to include the voices of people with lived experience of suicidality (Shand et al., Reference Shand, Christensen, Pirkis, Spittal, Batterham, Woodward, Tighe and McKay2015). It examined experiences of accessing healthcare after a suicide attempt from the perspectives of people with lived experience who had either attempted suicide or cared for someone who had attempted suicide. All participants were required to be older than 18 years of age, and so, while this precluded children from participating directly, some of the caregivers were mothers of daughters who had attempted suicide. This article will present three case studies of these mothers: Emma, whose daughter had eventually died by suicide after no appropriate support was found; Jane, who continued to struggle with accessing appropriate support for her daughter; and Isabel, who spoke about being ‘lucky’ in that her daughter had a positive experience of the healthcare system. It must be noted here that featuring these mother-daughter case studies does not diminish other parent/guardian-child relationships; rather, it is simply a reflection of those who participated in this particular study.
Methodology
Emma, Jane, and Isabel (all pseudonyms) took part in semi-structured interviews (qualitative component) as a result of their initial participation in the larger online survey component of the CAASA study, or in response to recruitment through websites and social media. Recruitment for the CAASA study was conducted via various media, including CRESP, the Black Dog Institute, other CRESP member websites, suicide-related websites, relevant professional, consumer and caregiver sites, and other media (such as Google and Adwords). The interviews took place between February and May 2014. All three women identified as being caregivers for someone who had attempted suicide in the previous 18 months but not in the past month. This timeframe was chosen so that stories of recent experience could be uncovered but without the risk of a person either being retraumatised from telling the story, or still being in the first weeks of grief or shock. The Human Research Ethics Committee of the University of New South Wales granted ethical approval (#HC13298).
Twelve semi-structured interviews were conducted with people who provided care for their loved ones who continued to be suicidal, or had subsequently died by suicide. It should be noted here that while ‘loved ones’ can be a contested term in suicide bereavement, it was applicable in all 12 stories here. A clinical psychologist with significant experience in working with people with mental illness and suicidality conducted the interviews and debriefed participants afterwards.
As explained in the study's final report (Shand et al., Reference Shand, Christensen, Pirkis, Spittal, Batterham, Woodward, Tighe and McKay2015), potential participants were all given information sheets detailing the purpose and requirements of the study, and all participants signed consent forms. Those who signalled that they would be interested in participating in the qualitative component were then recontacted, the project re-explained, their consent regained, and a convenient time for the interview decided. At all times, participants were aware that they could stop the interview at any stage if distressed, but no one did. At the conclusion of the interview, participants were also offered a check-in phone call the next day. All deidentified interviews were then transcribed and participants given pseudonyms.
Initially, a ‘dirty text’ analysis was undertaken on all the qualitative data (see Tamas, Reference Tamas2011), which aims to find potential redemption within stories of trauma. Participants’ narratives were analysed — within and across — to see how their stories were told, but also how experiences could be shared or be dissimilar. Case studies were then selected as exemplars of three different healthcare experiences of mothers with suicidal daughters younger than 16 years of age. These case studies paint a picture of how a child does and does not fit within the current Australian healthcare system after attempting to take their own life and the family's experiences trying to access appropriate care and support when a child is legally not able to make decisions on their own.
Emma
Emma's daughter, Maya, had died by suicide when she was in Year 12, and had attempted suicide at least twice before her death. Hospitalised after her first suicide attempt at age 15, Maya later struggled to access her school work during her hospitalisation as she was in the process of completing Year 12 (her final year of high school within the Australian system and one that influences which course, if any, a student is accepted into at university). Maya had been a high-achieving student and had grounded much of her self-esteem within this. While acknowledging the stress her daughter placed on herself, Emma explained that the mental health facility did not help her daughter cope with this stress either:
. . . when she first went into the hospital we said, ‘We need to get her homework, her class work from school, ’cause she's already anxious about her schoolwork. Is it possible to take information from the school that I can bring it into her?’ And they said, ‘Oh no. It's all right. We run classes here at the hospital for students.’ Well, the classes were aimed I think at Grade 3; certainly wasn't the class work that she was doing. She was terribly anxious about trying to keep up. So that when she got out of hospital she could get back into the school things once she got into school. So all of these delays just kept adding to the stress level.
In this way, without access to her work and struggling with suicidality in a hospital that did not support her needs, Maya seemed to feel the loss of her student status was akin to a loss of self. By losing access to her schoolwork, Maya may have believed her life was over, as her final grades and access to university courses would have been affected.
Described by her mother as ‘the most brilliant, intelligent person that I have probably ever known’, Maya consequently lost the ability to speak to the professionals trying to treat her, which further hindered any treatment:
. . . as soon as somebody from any sort of medical situation tried to speak to her, she just couldn't talk. She'd explain it as getting this freezing in the throat, and she would try to talk but nothing would come out. So she could talk to me perfectly fine — before she got in there she could talk perfectly fine. We thought after we got out, we would sit and practise what she was going to say when she got in to see anybody. Like, when we went back to see a psychologist or anything afterwards. But as soon as she'd walk in the room, it was like, shut down. It was the most dreadful thing to watch.
As a result of Maya's inability to talk, Emma found she had to become even more proactive in her advocacy once her daughter was discharged, as follow-up care was not always ensured. Emma spoke about the difficulty in simply accessing the first appointment from the organisation recommended as appropriate for Maya's age and needs within her discharge plan:
So about two and a half weeks after she'd been released by the hospital, I rang [the organisation] and said, ‘My daughter is in a really bad state. I need someone to see her right now. We can't keep getting put off from these appointments. We need support; we need some help.’
In this way, while Emma managed to access care, the service turned out to be neither appropriate to her experiences, nor able to provide care that was consistently or reliably available despite its promises. After significant chasing, a (very brief) first appointment was kept; however, Emma found that the treatment, when received, was not tailored to her daughter's inability to speak:
I went into a number of the interviews with her because of this communication problem. But she also went to a few on her own. And at one stage there was nothing changing there. And I went into one of these interviews and I said, ‘You're not doing anything different. Every week that she comes in here you have the same conversation with her. She needs something to work with, something to grasp hold of. Something to give her some hope, you know.’ And the girl that was her case manager said to me, ‘Yes. But I have to get to know her first. And because she doesn't talk, I can't do the next step without her talking.’ And I said, ‘But she's not going to talk. You've got — you already know this about this person. You need to try something different, you know.’ ‘Oh well, we can't. It's not part of our process.’
In this way, all responsibility for care and support was placed on the shoulders of a young, vulnerable girl. As the agency forgot and rearranged Maya's appointments, and her mother chased up the promised care as best she could, Maya lost all hope:
To be truthful, I think our experience [at the organisation] was the most unhelpful thing that happened to her. Because she lost belief that anyone could help her. . . . I repeat the story without any belief that anyone is actually going to, you know, do anything. It's just all another lot of paperwork filling. So they were the things she said to me, nobody actually cares.
Further, as Emma navigated various options for Maya, she found no connections between services. As a result, she had to retell Maya's story each time — another tiring, and apparently useless, hurdle to overcome in seeking care:
. . . when you walk into the psychiatrist appointment when you first have it at the hospital, you get asked your whole story. So you tell the whole story. And then the next day the psych that's actually on the ward interviews you, and you go through the whole story. . . . And you go, ‘Haven't you got all this information already?’ ‘Oh on record, yes, but we have to ask the questions now.’ By the time you get through repeating that story five or six times you go, ‘You know what? I know nobody is listening to me.’
As Maya lost hope, Emma became increasingly frustrated with the healthcare system. She also found that her motives as a mother were questioned, with some health professionals presuming she was interfering rather than trying to be helpful. Emma gave an example of an appointment with one psychiatrist where she had accompanied Maya to be a support as she was not able to speak. The psychiatrist initially presumed this to be an act of control:
Then he realised that as the time went on that I wasn't an interfering mother. And that actually maybe I had been there all along trying to help my daughter survive this. So by the time we got to the end of the appointment, he was actually much more closer to me.
Yet, as the run of ‘bad luck’ continued with the organisation, and other health professionals, Maya was left without care, or hope, and she eventually took her own life. After Maya's suicide, Emma sought answers from the organisation meant to handle the post-discharge support:
They were asking all these questions. ‘But didn't you get peer support? Didn't you get this happening?’ I said, ‘No. None of those things happened to me.’ So I think those things are supposed to happen really early on in the process. But they've all been missed for us. Maybe it was just — it was just bad luck, really I think. ’Cause as I said, it wasn't that it wasn't part of their process. We just had never been given it — and no one ever checked to see if we had received those services. And so they were quite upset when I went to that afterwards interview, that — that we had not received any of these things.
Maya's death speaks to the tangible danger children are placed in where services are unable to create an appropriate space for them — both during the acute crisis stage and after discharge from hospital.
Jane
Jane's experiences with navigating the healthcare system after her 14-year-old daughter, Amanda, attempted suicide were also fraught. After her overdose, Amanda was ‘literally dumped in a short-stay ward for two nights with any nurse they could find sitting with them for 24-hour care’. Jane explained that this ward was the only option due to Amanda's age because she ‘couldn't be put in the paeds unit because paeds couldn't take psychiatric patients, and they couldn't go to a psychiatric ward because they were a kid’. Jane felt the care she received at the hospital was useful: ‘For the first time ever I felt like someone was actually listening to what I was saying about my child.’ However, this care was also confined only to the hospital space: ‘Yeah, she was seen by the psychiatrist registrar that was at the hospital. She was seen by a psychologist for the psychiatric unit. They were both great, but they were both very much, “Once she leaves here, good luck”.’
Yet, while she was able to talk to the psychiatrist registrar and psychologist, Jane believed she had received no information about Amanda's physical condition and whether the overdose had left a lasting impact: ‘I still, to this day, don't know what they actually did to my daughter other than put a drip on her . . . or how serious her condition was.’ Further, her interaction with other hospital staff was less positive and supportive. Similar to Emma, Jane also experienced presumptions of behaviour based on her being the mother. Even though she had ‘five other kids at home’, Jane felt hospital staff manifested ‘a guilt trip on me, “if you don't stay, we've got problems”. . . . As far as the hospital was concerned it was my problem to sit with her 24 hours.’
Upon being discharged, Jane was put in charge of weaning Amanda off her anti-depressants, which can be a complicated process. However, the only support Jane received to do this was a referral to the local Child and Adolescent Mental Health Service (CAMHS), yet this provided little practical or immediate assistance:
Apparently the CAMHS team told us they get access to a psychiatrist three days a month and that psychiatrist has to serve all their patients. So there's basically a waiting list. She doesn't get referred to their psychiatrist unless they deem it necessary. So I've had to do ringing around myself and find a psychiatrist to get her booked in with.
Even while taking this proactive approach to finding appropriate care, Jane was further stymied due to Amanda's age: ‘. . . even my GP hasn't been helpful. He tried one psychiatrist that said, “Oh, he wouldn't touch her because she's 14”, and it was — that was the end of the matter.’
Even at the time of the interview, with new professionals in place, Jane did not yet feel hopeful that her daughter was receiving appropriate care. Similar to Emma's experience with Maya, Jane felt the health professional was not looking deeply enough into Amanda's issues but simply going through superficial motions: ‘. . . I don't think it's enough just to go in there and ask her how she's feeling and have a chit-chat to her for about an hour and then say, “I'll see you in two weeks”.’ While Jane did not feel that the follow-up care provided was adequate, given the age of her daughter and her family situation, she found people with lived experience provided more practical support: ‘And the scary thing is the people that are giving me advice on where to go are people that have had to go through the system themselves because of their own problems.’
Consequently, if the care provided by different services and organisations was not perceived to be effective or appropriate, caregivers like Jane found themselves taking on the role of advocate for their loved one: ‘. . . if I'm not going to be proactive for my daughter then nobody else is going to be’. In this way, and again similar to Emma's experience, Jane's experience demonstrated that even if help was accessed, it could not be relied upon to be appropriate or consistent. As a result, Jane had to maintain her active role as Amanda's advocate while also caring for her other children and fulfilling other commitments. After her experience and watching others struggle to access appropriate care, Jane wondered: ‘How many people are actually dying because they're lost in a system that either doesn't work or, quite frankly, I think is not actually in place.’
Isabel
Somewhat due to its positive nature, Isabel's story was shorter than either Emma's or Jane's stories. Since turning 14-and-a-half, Isabel's daughter, Essie, had attempted suicide five times in the 6 months prior to the interview; she had also struggled with anorexia nervosa and self-harm. These five suicide attempts had varied in method, including the consumption of bleach, an attempt to drown in the bath, and overdoses using a mix of medications. After Essie had drunk bleach — her most recent suicide attempt — Isabel had taken her to the emergency department where the staff ‘were so beautiful. They took bloods, they did a chest X-ray, and they were just really, really lovely’. Essie was able to see her psychiatrist shortly after admission as her files were accessible in the system, and her community care linked effectively with her inpatient team. During the 6 months in which she had been suicidal, and despite her age, Essie had been able to maintain a consistency of care where professionals involved were familiar with her case. Isabel spoke of the continuity of care they had experienced as a family and the familiarity with which Essie was ensconced in her support team who understood who she was and how her needs had changed in the previous 6 months. This differed significantly from the experiences of both Maya and Amanda.
As she told her story, Isabel recognised though that her positive experience of the mental healthcare system was not always achieved by her peers. She spoke repeatedly about ‘luck’:
My experience of the healthcare system has been amazing. I really, really cannot fault it. And I know I am incredibly lucky in that regard. Because it just — and it is totally — I have spoken to people whose child has made attempts, and they have gone, ‘We don't even have a psychiatrist.’ So, really?
Yet, Isabel also acknowledged that an important factor had been that Essie's first attempt was perceived to be serious enough by hospital staff to garner follow-up care and that this follow-up care had been effective and consistent. Had Essie not been helped in such a way, and so immediately, Isabel believed she would not know how to find appropriate help: ‘It is really tricky, because I think it was luck of the draw that we were snapped up when we were. I don't know. Do you know, I wouldn't know how to access it?’
Essie was beginning to improve with this coordinated care, which also now involved her school. Isabel described a set of safety cards that assisted Essie in letting others know how she was feeling: ‘. . . so she has got, you know, like, a traffic light system, so yeah, “I am all good. I am good to go today”. Or, “Oh, I am feeling a little bit wobbly, stay with me”. Or, the red is stop everything — “I need — I need help and I need it now”.’ These solutions were recognised to be short term, but they protected Essie until long-term care plans were put in place and tested for their appropriateness.
Discussion
These three different outcomes within these case studies highlight two systemic and foundational issues in the Australian (mental) healthcare system, both during an acute suicidal crisis and post-discharge: (1) inappropriate and inconsistent care targeting children who have attempted suicide; and (2) negative perceptions of, and lack of support for, carers of these suicidal children.
In two of the three stories, inappropriate and inconsistent care of suicidal children was demonstrated, even by services deemed suitable for children and adolescents. This is most poignantly highlighted by Emma, whose daughter Maya died by suicide. Given the complexity within the human experience of suicidality, no one factor can be said to cause a person to suicide. However, the organisation put in charge of Maya's post-discharge treatment arguably did not support this vulnerable girl during a time found to be critical in previous research (see Meehan et al., Reference Meehan, Kapur, Hunt, Turnbull, Robinson, Bickley and Appleby2006). Maya's appointments were not kept or were reshuffled, and her treatment was not appropriate to her specialised needs. In contrast, Essie had access to appropriate and continuing support through her family, her school, and her consistent healthcare program. Importantly as well, it was also acknowledged that the supports offered would need to change as Essie's needs changed in time.
Further, help was rarely offered — it had to be chased. A difficult task to undertake even as an adult, this was impossible for a child who needed parental consent for different aspects of treatment. Further, this situation did not consider the emotional states of either the mothers or the daughters in the aftermath of the suicide attempt. Regardless of how they were feeling, both Emma and Jane had to proactively seek help for their daughters (Maya and Amanda respectively) — all of which took significant time and resources — while balancing the other commitments in their lives. This became an increasingly stressful and hopeless experience for Emma as nothing appeared to be effective or available, and her daughter sunk deeper into her illness. For all its positive outcomes, even Isabel's story does not demonstrate a system that easily includes children, given her narrative of luck throughout. Essie was lucky; Maya and Amanda were not.
Amid this proactive support-seeking, Emma and Jane also had to battle the perceptions of healthcare professionals who judged their advocacy in two different ways. First, Jane spoke about the perception that because she was an active caregiver for Amanda, she was expected to take full responsibility for keeping her safe. This perception appeared to be grounded in a belief that a parent, especially a mother, would do all necessary to keep their ‘loved one’ from dying by suicide. However, while true, it also ignored the real-life situations of many families where more than one child needed to be cared for; jobs were not always flexible enough to allow time off during crisis situations; caregivers were also the sole breadwinners, as was the case in single-parent households; and caregivers themselves were not always well enough to continually take on the full responsibility of care. Second, Emma spoke of being presumed to be ‘interfering’ rather than simply trying to help her daughter. In the instance she gave, Emma was able to talk the psychiatrist around to recognising her intentions and actions as important to Maya's wellbeing. However, other parents may not have this same opportunity and so may miss out on learning about their child's condition and care and given all the available options for support. Further, healthcare professionals who presume a parent to be interfering may miss signs that the parent is struggling with their own wellbeing.
These three case studies demonstrate that similar to previous research (see Tishler et al., Reference Tishler, Reiss and Rhodes2007; Mishara, Reference Mishara1999), children and young adolescents can become suicidal, attempt to take their lives, and, in some cases, die by suicide. Yet, the Australian healthcare system has very few supports in place for children who have attempted suicide, and their carers. The findings explored here are limited in that they come from three case studies and thus cannot be claimed to be generalisable. However, despite these limitations, these case studies highlight important findings around the gaps that currently exist in the care and support provided to suicidal children, particularly in the critical post-discharge phase. These findings open a much-needed discussion around how better to protect these vulnerable children, and their carers, so as to prevent their suicides. Further, these findings also highlight the vital role that parents and guardians play in supporting their children during and after a suicidal crisis. Indeed, schools can also provide effective support to children who return after a suicide attempt. These three case studies acknowledge the importance of support and referrals being offered, rather than needing to be proactively sought, where the support is consistent and appropriate to the child's specific needs, and where services and organisations work in collaboration with the child and family to bring about holistic and effective change.
Acknowledgments
The authors wish to thank the National Mental Health Commission for their support and guidance of this project. The authors also wish to thank the participants for their generosity and willingness to share their stories for this project.
Financial Support
The Care After a Suicide Attempt (CAASA) Study was funded by the Australian National Mental Health Commission.
Conflict of Interest
None.
Ethical Standards
The Human Research Ethics Committee of the University of New South Wales granted ethical approval for this study (# HC13298).
