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What are the physical and psychological health effects of suicide bereavement on family members? An observational and interview mixed-methods study
ForJournal: peerBMJ Open review only Manuscript ID bmjopen-2017-019472
Article Type: Research
Date Submitted by the Author: 04-Sep-2017
Complete List of Authors: Spillane, Ailbhe; University College Cork National University of Ireland, Department of Epidemiology and Public Health; National Suicide Research Foundation Matvienko-Sikar, Karen; University College Cork National University of Ireland, Department of Epidemiology and Public Health Larkin, Celine; University of Massachusetts Medical School Department of Medicine, Department of Emergency Medicine Corcoran, Paul; University College Cork, Department of Epidemiology and Public Health; Cork University Maternity Hospital, Department of Obstetrics and Gynaecology
Arensman, Ella ; University College Cork National University of Ireland, http://bmjopen.bmj.com/ Department of Epidemiology and Public Health; National Suicide Research Foundation
Keywords: Mixed-methods, Suicide bereavement, Family members, Morbidity, Health
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1 2 3 What are the physical and psychological health effects of suicide bereavement on family 4 5 members? An observational and interview mixed-methods study 6 7 8 9 Ailbhe Spillane1 2*, Karen Matvienko-Sikar1, Celine Larkin3, Paul Corcoran2, 4, Ella Arensman1,2 10 11 12 13 14 *Corresponding author: Ms Ailbhe Spillane ([email protected]; 00353 21 4205544) 15 16 For peer review only 17 th 18 1. Department of Epidemiology and Public Health, 4 Floor Western Gateway Building, 19 Western Road, Cork, Ireland 20
21 22 2. National Suicide Research Foundation, Room 4.28, Western Gateway Building, 23 Western Road, Cork, Ireland 24 25 26 27 3. Department of Emergency Medicine, University of Massachusetts Medical School, 28 Worcester, MA, USA 29 30 31 4. Department of Obstetrics and Gynaecology, Cork University Maternity Hospital, 5th http://bmjopen.bmj.com/ 32 Floor, Wilton, Cork, Ireland 33 34 35 36 Keywords: mixed-methods, suicide bereavement, family members, morbidity, health 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 Word count: 6,122 41 42 43 44 45 46 47 48 49 50 51 52
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1 2 3 ABSTRACT 4 5 Objectives: Research focussing on the impact of suicide bereavement on family members’ 6 physical and psychological health is scarce. The aim of this study was to examine how family 7 8 members have been physically and psychologically affected following suicide bereavement. 9 10 A secondary objective of the study was to describe the needs of family members bereaved 11 12 by suicide. 13 14 Design: A mixed-methods study was conducted, using qualitative semi-structured interviews 15 16 and additional quantitativeFor peer self-report review measures of depression, only anxiety and stress (DASS- 17 21). 18 19 20 Setting: Consecutive suicide cases and next-of-kin were identified by examining coroner’s 21 records in Cork City and County, Ireland from October 2014 to May 2016. 22 23 24 Participants: Eighteen family members bereaved by suicide took part in a qualitative 25 interview. They were recruited from the Suicide Support and Information System: A Case- 26 27 Control Study (SSIS-ACE) where family members bereaved by suicide (n = 33) completed 28 29 structured measures of their wellbeing. 30 31 Results: Qualitative findings indicated four superordinate themes in relation to experiences http://bmjopen.bmj.com/ 32 33 following suicide bereavement: (1) immediate grief reactions and its consequences; (2) 34 35 enduring physical, psychological and psychosomatic difficulties; (3) range of support needs 36 required and its influencers; and (4) reconstructing life after deceased’s suicide. Initial 37 38 feelings of guilt, blame, shame and anger often manifested in enduring physical, 39 on September 30, 2021 by guest. Protected copyright. 40 psychological and psychosomatic difficulties. Support needs were diverse and were often 41 42 related to the availability or absence of informal support by family or friends. Quantitative 43 results indicated that the proportion of respondents above the DASS-21 cut-offs 44 45 respectively were 24% for depression, 18% for anxiety and 27% for stress. 46 47 Conclusions: Healthcare professionals’ awareness of the adverse physical and 48 49 psychosomatic health difficulties experienced by family members bereaved by suicide is 50 51 essential. Pro-actively facilitating support for this group could help to reduce the negative 52 53 health sequelae. The effects of suicide bereavement are wide-ranging, including high levels 54 of stress, depression, anxiety, and physical health difficulties. 55 56 57 58 2 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 3 of 30 BMJ Open
1 2 3 4 5 Strengths and limitations of the study 6 7 ñ This study addressed a specific knowledge gap by examining the physical and 8 9 psychological health effects of suicide bereavement on family members in Ireland 10 11 ñ The study covered consecutive cases of suicide, which increases the external validity 12 of the outcomes 13 14 ñ This study screened open verdict deaths with validated screening criteria to identify 15 16 probableFor suicides. peer Therefore, thisreview study benefits only from the inclusion of probable 17 suicide cases that would otherwise have not been included in the study 18 19 ñ Physical health issues were self-reported and were not objectively measured 20 21 22 INTRODUCTION 23 24 Suicide is a significant global concern, with approximately 800,000 people taking their own 25 lives every year[1]. Consequently, for every suicide, up to 60 people are intimately 26 27 affected[2]. Recent research also indicates that 1 in 20 people have experienced a suicide in 28 29 the past year, and 1 in 5 during their lifetime[3]. Quantitative research has highlighted 30
adverse mental health outcomes of suicide bereavement, including heightened risk of http://bmjopen.bmj.com/ 31 32 suicide[4-6], attempted suicide[6-9], depression[10 11], psychiatric morbidity[7] and 33 34 psychiatric admission[11]. However, qualitative research examining physical and 35 36 psychosomatic health morbidity in the aftermath of suicide bereavement is sparse. 37 38 To date, several quantitative studies have been conducted to investigate whether 39 on September 30, 2021 by guest. Protected copyright. 40 suicide bereavement confers a higher risk of physical morbidity compared to other causes of 41 death [4 6 12-15]. People bereaved by suicide had poorer general health[16 17], reported 42 43 more pain[17], reported more physical illnesses[18] and disorders including cardiovascular 44 45 disease, chronic obstructive pulmonary disease, hypertension and diabetes[11]. In addition, 46 47 suicide-bereaved family members visited a GP more often[18] and had significantly higher 48 rates of outpatient physician visits for physical illnesses[11] than non-suicide bereaved 49 50 individuals. These negative health outcomes illustrate the importance of timely and 51 52 effective health services and psychosocial supports for those bereaved by suicide, many of 53 whom may carry existing health adversities prior to the death[11]. 54 55 56 57 58 3 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 4 of 30
1 2 3 Previous research has emphasised the importance of access to support for people 4 5 bereaved by suicide [19 20]. Feelings of depression, anxiety, guilt, extreme sadness, anger 6 and nightmares motivate help-seeking in people bereaved by suicide[21 22]. Some research 7 8 has been conducted into explore the perceived needs of family members bereaved by 9 10 suicide. Both formal support, in the form of health service use, and informal support help 11 from friends, families or other non-medical sources, were found to be important. It is critical 12 13 to consider that each type of support addresses different needs[23-25]. A quarter of those 14 15 bereaved by sudden natural death that they were most affected by the death in the first 16 For peer review only 17 week[20]. One third of those bereaved by unnatural causes of death reported that they 18 were most affected in the first six months following the death[20]. One study noted that 19 20 first-degree relatives had greater need for formal support than second-degree and non- 21 22 relatives[26]. Compared to those bereaved by sudden natural causes of death, people 23 24 bereaved by suicide were less likely to receive informal support and immediate support 25 following the death, and were more likely to experience a delay in receiving support [20]. 26 27 28 Although a significant number of quantitative studies have examined the association 29 between suicide bereavement and subsequent physical health outcomes, the topic has 30 31 rarely been examined from an experiential perspective using qualitative research involving a http://bmjopen.bmj.com/ 32 33 non-selective sample[27 28]. Researchers are beginning to identify the need for further 34 qualitative research in this area[29], to take into account the inherent complexity of grieving 35 36 and social processes[12]. A recent qualitative systematic review identified three areas that 37 38 are important for those bereaved by suicide; feelings experienced by those bereaved by 39 on September 30, 2021 by guest. Protected copyright. 40 suicide, the meaning-making process following bereavement, and the social context[30]. 41 Specifically, the authors note that those bereaved by suicide experienced a range of grief 42 43 reactions, including shame, stigma, blame, guilt, emptiness and a lack of social supports 44 45 following the bereavement[30]. In addition, other common feelings included anger and 46 47 depression[28]. However, this review only included studies on the thematic processes of 48 suicide bereavement and did not report on health outcomes following suicide bereavement. 49 50 51 While the mental and physical health effects of suicide bereavement have been 52 examined in quantitative studies, they lack the detailed unique insight into the physical 53 54 health experiences of people bereaved by suicide. The primary aim of this research is to 55 56 examine how people have been physically and psychologically affected by a family 57 58 4 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 5 of 30 BMJ Open
1 2 3 member’s suicide. A secondary objective of the study is to describe the support needs 4 5 required by family members bereaved by suicide. The current mixed-methods approach 6 benefits from leveraging the advantages of both quantitative and qualitative methodological 7 8 approaches[31], while being able to provide a more comprehensive and in-depth 9 10 consideration of the research problem under investigation[32]. 11 12 METHODS 13 14 Study design and setting 15 16 This study appliedFor a mixed-methods peer approach. review The qualitative only study was linked to a larger 17 18 case-control study, the Suicide Support and Information System: A Case-Control Study (SSIS- 19 20 ACE, January 2014-March 2017). Qualitative interviews were supplemented with 21 22 quantitative data of suicide-bereaved family members’ wellbeing, which was collected as 23 part of the larger case-control study. Further information on the study design has been 24 25 reported elsewhere[33] and is available as a supplementary file. 26 27 Sample and recruitment 28 29 Qualitative study 30 31 http://bmjopen.bmj.com/ 32 A subset of the 33 participants over the age of eighteen who took part in the SSIS-ACE study 33 and who consented for further follow-up were approached to take part in the qualitative 34 35 study. At the time of the qualitative study recruitment, there were 29 participants in the 36 37 larger study to sample from. Three of these did not provide written consent for further 38
follow-up and one only wanted to be contacted again by the researcher that conducted the on September 30, 2021 by guest. Protected copyright. 39 40 initial psychological autopsy interview. Therefore, 25 individuals were initially contacted via 41 42 a letter. Nineteen participants agreed to the interview but one participant did not consent 43 44 for the interview to be audio-recorded and was therefore excluded from the qualitative 45 analysis. This yielded a response rate of 75%. In one instance, two family members were 46 47 interviewed together at their request. No repeat interviews were conducted. Full details of 48 49 the recruitment process are illustrated in figure 1. Mean time since bereavement during the 50 51 qualitative interviews was 27.6 months (range: 15- 38 months). Half of all family members 52 interviewed (n = 9) found the deceased’s body, while the other half (n = 9) were informed of 53 54 the death by other family members or a member of the police force. 55 56 57 58 5 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 6 of 30
1 2 3 4 5 Quantitative study 6 7 8 The quantitative data outlined in this paper was collected as part of a larger case- 9 control study (SSIS-ACE). In SSIS-ACE, a senior researcher reviewed records of consecutive 10 11 suicides and open verdict files from inquests held by all coroners in Cork, Ireland over a 19- 12 13 month period. Open verdict files that met the Rosenberg criteria[34] for the determination 14 of suicide[34] were eligible for inclusion in the study as probable suicides[33]. Relatives 15 16 were eligible toFor participate peer in an interview review for the case-control only study if they were well- 17 18 acquainted enough with the deceased to provide detailed information with respect to the 19 20 deceased’s life and were over the age of 14 years. Family members were contacted by letter 21 and then by telephone and invited to participate in the psychological autopsy interview. 22 23 ‘Psychological autopsy’ is a specific research method which involves retrospectively 24 25 collecting information on aspects of a suicide decedents life, including socio-demographics, 26 27 previous self-harm, mental health, physical health, personality traits and treatment 28 provided by health care professionals before the suicide[35]. This information is primarily 29 30 gathered via structured interviews with family or friends of the deceased and also 31 http://bmjopen.bmj.com/ 32 information obtained by health professionals who treated the deceased[35]. The study took 33 into account elements of the psychological autopsy approach according to Conner and 34 35 colleagues[36]. Thirty-four family members agreed to take part but one interview was not 36 37 fully completed and was excluded from analyses. Therefore, full interviews were completed 38 39 with 33 family members (44%). This response rate is similar to other psychological autopsy on September 30, 2021 by guest. Protected copyright. 40 studies[37 38]. The mean time since bereavement during the psychological autopsy 41 42 interviews was 10.2 months (range: 6 – 21 months). 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 6 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 7 of 30 BMJ Open
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47
48 49 50 Insert Figure 1 here 51 52 53 54 55 56 57 58 7 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 8 of 30
1 2 3 Figure 1: Flowchart of recruitment process for SSIS-ACE study 4 5 Measures 6 7 8 Qualitative study 9 10 Semi-structured interviews (n = 18) were conducted with the aid of a topic guide[33] 11 12 in order to explore the experiences of people bereaved by the suicide. Participants’ 13 permission to audio-record the interview was obtained. Thirteen interviews took place in 14 15 the participant’s home, two in university research offices and three at a neutral location 16 For peer review only 17 selected by participants. All interviews took place in a single session. Mean length of 18 19 interviews was 97.5 minutes (range 42-180 minutes). 20 21 Quantitative study 22 23 Family members’ wellbeing was assessed using the 21-item version of the Depression, 24 25 Anxiety, and Stress Scale (DASS-21) [39]. This scale assesses a participant’s wellbeing in the 26 27 past week. The scale successfully differentiates between the three affective states while also 28 demonstrating consistency between clinical and non-clinical samples[39]. Median scores of 29 30 depression, anxiety and stress, together with dichotomised variables were presented. 31 http://bmjopen.bmj.com/ 32 Recommended cut-off scores to generate severity level ranges from normal, mild, 33 34 moderate, severe and extremely severe categories[40]. However, due to small numbers in 35 the study, it was not possible to subdivide the sample by these five categories. Therefore, 36 37 participants who met the criteria for depression, anxiety and/or stress at the levels between 38 39 mild and extremely severe were collapsed into a category of above the “normal” cut-off and on September 30, 2021 by guest. Protected copyright. 40 those below these scores were classified as “normal”. Scores of ≥10 for depression, ≥8 for 41 42 anxiety and ≥15 for stress were considered indicative of the presence of depression, anxiety, 43 44 or stress respectively. These cut-off points have been used previously [39 41] and are 45 46 considered diagnostic indicators of potential diagnoses of depression, anxiety and/or stress 47 [40 42]. All statistical analyses were conducted using SPSS Version 22. 48 49 50 51 52 53 54 55 56 57 58 8 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 9 of 30 BMJ Open
1 2 3 4 5 Data analysis 6 7 8 Qualitative study 9 10 Qualitative data were analysed using thematic analysis, which is a flexible method that 11 12 allows for a variety of ontological and epistemological stances[43]. Thematic analysis 13 involves a number of steps, including familiarising oneself with the data, generating initial 14 15 codes, searching, reviewing and finally, defining themes[43]. Two authors (AS and KMS) 16 For peer review only 17 coded the data and all stages of coding and development of themes were discussed with the 18 19 research team. NVIVO 11 software facilitated the organisation of the data. In the absence of 20 standardised guidelines to report mixed-methods research, the Consolidated Criteria for 21 22 Reporting Qualitative Research (COREQ) checklist was used and is available as a 23 24 supplementary file. 25 26 Quantitative study 27 28 Descriptive statistics were used to present information on the age, gender and 29 30 marital status of the suicide decedents, the method of suicide, if a suicide note was present 31 http://bmjopen.bmj.com/ 32 and if there was a history of self-harm prior to the death. The age and gender of the family 33 34 members and their relationship to the deceased were also presented using descriptive 35 statistics. The characteristics of those interviewed for the follow-up qualitative study was 36 37 compared with those who were not interviewed using Chi-Square and T-tests. Tests of 38 39 normality indicated the data was non-normal and therefore non-parametric tests were on September 30, 2021 by guest. Protected copyright. 40 utilised. Median scores and inter-quartile ranges were computed to describe the DASS-21 41 42 sub-scales and total score. A Mann-Whitney U test was used to test for differences in 43 44 wellbeing for males and females and for people bereaved by a hanging or non-hanging 45 46 suicide. 47 48 RESULTS 49 50 Qualitative results 51 52 The 18 participants interviewed for the qualitative study did not significantly differ from 53 those not interviewed regarding their gender (p = .42), age (p = .56), relationship to the 54 55 deceased (p = .69), method of suicide (p = .69), their depression (p = .49), anxiety (p = .08), 56 57 58 9 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 10 of 30
1 2 3 stress (p = .59) and total score (p = .28) on the DASS-21 scale. Four main themes were 4 5 identified from the analysis process: ‘immediate grief reactions and its consequences’, 6 ‘enduring physical, psychological and psychosomatic health difficulties’, ‘range of support 7 8 needs required and its influencers’, and ‘reconstructing life after deceased’s death’. 9 10 11 12 13 Immediate grief reactions 14 15 Participants described a range of immediate physical and psychological reactions when they 16 For peer review only 17 found out that their family member took their own life. Initial psychological reactions 18 19 included disbelief, shock, devastation, blame, guilt and extreme sadness. Participants often 20 felt angry, both towards the deceased and also healthcare professionals who cared for the 21 22 deceased. Conversely, two participants were not angry with their loved one for taking their 23 24 own lives: one participant felt relieved their family member was no longer suffering 25 psychologically and “felt she had escaped, she got out of it” and revealed it “alleviated some 26 27 of the pressure” as “she was going to get worse and worse”. Feelings of numbness were 28 29 reported, with some participants not wanting to believe that their loved one was dead. One 30 31 family member could not believe her sister was dead until she was given the chance to view http://bmjopen.bmj.com/ 32 her body. The delay in receiving the news about the death and viewing the body appears to 33 34 have been especially difficult for her when acknowledging the death: 35 36 “I went on then for the night like nothing had happened being honest with you, it was just 37 38 numb and I didn’t want to believe it until I saw it for myself. That was the Wednesday and 39 on September 30, 2021 by guest. Protected copyright. 40 we didn’t see her until the Friday” 41 42 Immediate psychosomatic reactions included nausea, vomiting, breathlessness, numbness, 43 44 memory loss, and an inability to stand as “my legs had just given way”. One participant 45 46 noted an immediate physical change to their health, as their heart rate escalated upon 47 hearing about the death, which resulted in a diagnosis of hypertension the following day: 48 49 50 “My heart rate went up straight away, through the roof. Actually, I had to see a doctor on 51 the next day [sic]…and I’m on blood pressure control pills since then and I will be probably 52 53 for the rest of my life”. 54 55 56 57 58 10 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 11 of 30 BMJ Open
1 2 3 Other psychosomatic health reactions often noted by participants included physical pain, 4 5 severe abdominal pains, loss of appetite, low energy levels and inability to sleep in the 6 immediate aftermath of the suicide. Some participants attributed their low energy levels to 7 8 “the emotion” and “turmoil” associated with their grieving, while others felt it was due to 9 10 their disrupted sleeping patterns. Reported problems with sleeping in the immediate 11 aftermath varied in severity and duration. One participant described how they “couldn’t 12 13 sleep at all in the beginning” and another described how they attempted to tire themselves 14 15 during the day with walks in an attempt to sleep at night. A number of participants 16 For peer review only 17 described experiencing distressing nightmares and visions of the deceased: 18 19 “The son came in like and he was asking me what I was doing…[deceased] was talking to me, 20 21 I was talking to him, he was there like, do you know what I’m saying…I thought he 22 was, I was out of my bed and the whole lot”. 23 24 25 Loss of appetite was reported by some participants as a psychosomatic reaction which often 26 27 led to weight loss. Reasons for loss of appetite varied, including nausea due to flashbacks of 28 finding the body, feelings of depression and despondence following the death: 29 30 31 “Food-wise, I’m never hungry, I could stay without it all day…if I have a cup of tea and a bit http://bmjopen.bmj.com/ 32 of bread in the morning, I’m grand…Since himself has gone, you’re just getting up in the 33 34 morning doing the odd old thing, sure what’s the point in doing it like”. 35 36 “the daughter brought up burgers and chips last night, I suppose I took about 8 chips out of 37 38 it, that’s it now I said, I’ve had enough of it, mother you’re not eating at all she said, no said 39 on September 30, 2021 by guest. Protected copyright. 40 I, I’ve had enough. It’s very hard to explain but you’re not in the mood for eating”. 41 42 Finding the decedent’s body appeared to induce more severe reactions in some cases which 43 44 often extended to longer-term psychological impacts, including depression, anxiety, panic 45 46 attacks, post-traumatic stress disorder, suicidal thoughts and suicide attempts. 47 48 “I was depressed afterwards and I…still have this fuzziness in my head…it’s very hard to 49 50 explain. It feels like I’m stressed, stressed, like even small little things I can’t deal with” 51 52 One participant noted that they were not distressed at finding the body but described the 53 54 scene as “calm”, while also providing her with the opportunity to say goodbye to the 55 deceased. It also allowed her to lay “down on the ground beside him and I put my head 56 57 58 11 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 12 of 30
1 2 3 down on his chest…he was still warm and everything…I just stayed there for a long…I 4 5 suppose it was my way of saying goodbye to him”. 6 7 8 9 Enduring physical, psychological and psychosomatic difficulties 10 11 12 The initial experiences of the majority of family members bereaved by suicide set the stage 13 for enduring physical, psychological and psychosomatic difficulties in the months following 14 15 the bereavement. Firstly, a number of adverse mental health outcomes were reported by 16 For peer review only 17 family members including being more concerned about their own mental health, 18 19 experiencing suicidal thoughts, suicide attempts, depression, anxiety, post-traumatic stress 20 disorder (PTSD), nightmares, memory loss and intrusive images of the deceased. One 21 22 participant attempted suicide in the months after the suicide but emphasised they did not 23 24 want to die but rather to escape the emotional pain and depression: 25 26 “The morning that it happened, I just woke up and the feeling was so awful just inside my 27 28 head, I thought like I just can’t stick this anymore, so that’s why I done it. It was just like to 29 get away from this awful feeling” 30 31 http://bmjopen.bmj.com/ 32 Ongoing intrusive images of the deceased and how they died were also reported by a 33 34 number of participants. These images were not restricted to those who found the body but 35 were also experienced by those who were informed of the death by others. One participant 36 37 was preoccupied with the violent and traumatic nature of the death which resulted in her 38 39 still being unable to sleep at night: on September 30, 2021 by guest. Protected copyright. 40 41 “I’d be awake all night…and then I’m wrecked during the day. In the dead of night in the 42 43 dark I think about how she done it…that would make me ill” 44 45 Additionally, a number of participants reported psychosomatic symptoms including, chronic 46 47 feelings of low energy/exhaustion, persistent chest pains, breathlessness and physical pain 48 49 which endured in the months after deceased’s death. Their health status was often 50 influenced by their health behaviours. Some family members noted “everything stopped, 51 52 the world stopped that day” and tried but failed to resume their normal physical activity. 53 54 For others, negative health behaviours, including excessive alcohol consumption and over- 55 eating were used as a coping mechanism: 56 57 58 12 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 13 of 30 BMJ Open
1 2 3 “I’d drink I’d say [pauses] a bottle of vodka a day and a few pints as well… it’s [the alcohol 4 5 consumption] got a bit worse… I don’t know if it’s directly related to it or whether I’m using 6 it as an excuse” 7 8 9 Importantly, some family members experienced an improvement in health behaviours, 10 including, increasing their levels of physical activity which benefited fitness levels, healthy 11 12 weight loss and aided the grieving process: 13 14 “I went out to the dancing on a Wednesday night, I said make new friends you know…Ya I’ve 15 16 got fitter… ForThat was apeer big boost for review me to chat to people only and pass away the week” 17 18 19 Participants experienced a number of adverse physical health problems in the months after 20 the deceased’s suicide, including being diagnosed with hypertension, type 1 diabetes and 21 22 diverticulitis. Participants attributed these diagnoses to the stress of the deaths: 23 24 “I was hospitalised again this week with it…the doctor came in and said “you need to stop, 25 26 you really need to stop, it’s not cancer but it’s going to affect you for the rest of your life…I 27 28 know that’s a consequence of dealing with [deceased’s death]” 29 30 Range of support needs required and its influencers 31 http://bmjopen.bmj.com/ 32 Participant’s needs for support were complex, with both formal and informal support being 33 34 required to address intense psychological, psychosomatic and physical symptoms brought 35 36 about by feelings of anger, guilt and blame: 37 38 “I went to a bereavement information evening one night before I started any counselling, 39 on September 30, 2021 by guest. Protected copyright. 40 they put up on a screen physical symptoms and there was about 20 different things and I 41 42 could tick at least 10 of them, shortness of breath, panic attacks, headaches, chest pains, 43 physical chest pains…crippling abdominal pains…it’s the anger that manifests itself in 44 45 physical pain” 46 47 Informal support, in the form of practical and emotional support from family and friends 48 49 was as important as formal support to some participants. One participant described how 50 51 “every night for so long my parents came over to stay every night”, while another credited 52 53 his wife as “the biggest support that I have received”. He went on to say that if he was “just 54 left to wallow in it”, that he “would have gone into a big black hole over it”. Another 55 56 57 58 13 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 14 of 30
1 2 3 participant emphasized the importance of both informal and formal support following a 4 5 suicide: 6 7 “The love of my family…“come home, we’ll mind you” and they did, that was incredible and 8 9 if some poor person doesn’t have that, I really pity them. It’s your family and your friends 10 that gets you through that, and the counselling” 11 12 13 Others described how family and friends helped with funeral arrangements, financial 14 support, preparing or bringing food to the family member and helping with practical jobs 15 16 around the house,For such as peer maintaining thereview house and garden only in the weeks and months after 17 18 the death: 19 20 “My friends from down the town would come up every day with food and I would always 21 22 forgot they were going to do it [laughs] so they were coming up for about a month with 23 24 food, they were so kind… I was embarrassed but I found it helpful” 25 26 In some instances, fractured family relations impeded the family member receiving informal 27 28 support. In those instances, the importance of formal support is paramount: 29 30 “I have a sister but then we fell out over this, I don’t have any contact with them…My 31 http://bmjopen.bmj.com/ 32 problem is if I was feeling down, I wouldn’t say it to them… [I’d be] very wary of people 33 34 because I’ve said things and it’s gone around town…I know I can trust my counsellor or my 35 doctor or yourself there now” 36 37 38 Another participant sought formal support as they “needed to speak to somebody outside on September 30, 2021 by guest. Protected copyright. 39 of my family because I was upsetting everybody when I wanted to talk”. Seeking formal 40 41 support was imperative “to get the counselling, just taking time to reflect on everything and 42 43 deal with it”. Two participants noted respectively that there was “no pressure with money” 44
45 from the counsellor and if they didn’t have “the money that day she’d say give it to me 46 when you have it”. A number of participants spoke about having to stop formal support due 47 48 to financial reasons, with one participant stating that there “should be free counselling for 49 50 people bereaved by suicide”: 51 52 “I hadn’t any steady money coming in, my illness benefit had finished and stuff like that…So 53 54 that’s the reason I finished up with him [counsellor]” 55 56 57 58 14 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 15 of 30 BMJ Open
1 2 3 The understanding and flexibility of some bereavement counsellors following the suicide 4 5 were hugely valued by participants. However, not all experiences with formal support were 6 positive, with one person noting that the counsellors were “too shocked to deal with me”, 7 8 while another said the counsellor “had the clock ticking”. Participants noted that nobody 9 10 proactively contacted them to offer formal support. This point is particularly salient as many 11 spoke of being unable to seek help themselves or were unsure of what help was required. 12 13 Feeling “so awful” and “you don’t even know what you need” were significant barriers to 14 15 seeking help while others had to “make the phone calls” and “run after all of them [the 16 For peer review only 17 counselling services]”. One participant spoke about how she didn’t approach her own GP for 18 help “but he never came with a list of things either to see how I was either, here’s a list of 19 20 services you can avail of”. She expected him to contact her and she explained “it’s very hard 21 22 yourself because you don’t even know what you need”. As a result, she was searching the 23 24 internet “to find anything” and spoke about how “things aren’t readily available I think in 25 this day and age even though mental health is a really important thing”. 26 27 28 Some participants wanted to attend a suicide bereavement support group as they felt 29 counsellors could not “possibly understand what’s going on in my head, like unless they’ve 30 31 been through it”. Others spoke of wanting to talk to others “with similar experiences” http://bmjopen.bmj.com/ 32 33 because “I think it’s important for me to feel that I’m not the only one going through this”. 34 Additionally, one participant felt that she would benefit from it “because I do find I’m alone 35 36 in my thoughts of it and I’m interested in getting other peoples stories so I can relate [to it]”. 37 38 However, no such support groups were available for any of the participants. A small number 39 on September 30, 2021 by guest. Protected copyright. 40 of participants reported that they did not require any formal support. One participant spoke 41 with their husband about whether they needed counselling and both concluded that they 42 43 can “hack this” on their own. Specifically, two participants who noted they did not require 44 45 formal support were engaging in over-eating and excessive alcohol consumption as coping 46 47 mechanisms. 48 49 Reconstructing life after deceased’s suicide 50 51 Each participant was confronted with trying to comprehend, make sense of and reconstruct 52 53 aspects of their lives following their family member’s suicide. Part of this reconstruction was 54 55 reappraising what was important to them and how they thought about life. Some 56 57 58 15 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 16 of 30
1 2 3 participants chose to make big life changes after the death, including moving homes, 4 5 changing jobs or completely disengaging from the work environment: 6 7 “I haven’t gone back to my old job in [big city], you know life has changed and I was working 8 9 long days and didn’t really have a life, now, I’m looking back and saying, there’s a little bit 10 more to life than that you know?” 11 12 13 Two participants moved house soon after the death. One described that she “couldn’t stay 14 there” as the death occurred in the house. The other participant was forced to sell the 15 16 house to pay offFor the debts peer the deceased review had accumulated butonly had hidden from his partner. 17 18 The participant felt a sense of rejection and betrayal that the deceased didn’t trust her 19 20 enough to speak to her about their spiralling debts. She would have “toughed it out and said 21 to him ok what are we going to do about it” but she feels he was afraid to tell her as “I 22 23 suppose he thought I’d leave him”. Three participants were in the process of selling their 24 25 properties or had a strong desire to move at the time of the interview as one felt she could 26 27 not “move forward while I’m in this house presently” due to her experience of visions of the 28 deceased in the house. 29 30 31 Quantitative results http://bmjopen.bmj.com/ 32 33 Characteristics of decedents and family members 34 35 Characteristics of the 33 suicide decedents and family members bereaved by suicide are 36 37 presented in Table 1. The majority of suicide decedents were male (72.7%), aged 40-59 38 39 years (42.4%), were single (42.4%) at the time of death, and died by hanging (57.6%). While, on September 30, 2021 by guest. Protected copyright. 40 just over half of the suicide-bereaved family members were female (54.5%) and aged 41 42 between 40-59 years (57.6%). The most commonly represented kinship was partner/spouse 43 44 (36.4%). 39.4% of suicide decedents were educated to secondary school level, followed by 45 46 one quarter (27.3%) and one fifth (21.2%) were educated to post-leaving certificate and 47 third level, respectively. The majority of suicide decedents (42.4%) were employed/self- 48 49 employed prior to their death. Data for the other educational and employment categories 50 51 were not presented to maintain confidentiality. Hanging was the most common method of 52 suicide (57.6%), with over half of the sample having a history of intentional self-harm prior 53 54 to their suicide (54.5%). Just under a half of suicide decedents (45.5%) left a suicide note. 55 56 57 58 16 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 17 of 30 BMJ Open
1 2 3 4 5 6 7 8 9 10 11
12 13 14 15 Table 1: Characteristic of suicide decedents and suicide-bereaved family members (n = 33) 16 For peer review only 17 Suicide decedents N (%) Family members N (%) 18 Sex 19 20 Male 24 (72.7) 15 (45.5) 21 22 Female 9 (27.3) 18 (54.5) 23 Age 24 25 18-39 years 9 (27.3) 7 (21.2) 26 27 40-59 years 14 (42.2) 19 (57.6) 28 29 60+ years 10 (30.3) 7 (21.2) 30 Interviewee’s relationship to deceased 31 http://bmjopen.bmj.com/ 32 Partner/Spouse 12 (36.4) 33 34 Parent 7 (21.2) 35 Sibling 9 (27.3) 36 37 Child 5 (15.2) 38 39 Marital status on September 30, 2021 by guest. Protected copyright. 40 41 Single 14 (42.2) 42 Married/co-habiting 12 (36.4) 43 44 Widowed/divorced/separated 7 (21.2) 45 46 47 48 Wellbeing outcomes (DASS-21 scale) 49 Median scores on the DASS-21 were highest for stress (Mdn = 12.00, IQR = 11.00), followed 50 51 by depression (Mdn = 4.00, IQR = 8.00) and anxiety (Mdn = 2.00, IQR = 5.00). Nearly one- 52 53 quarter of the sample (24.2%) had scores that indicated the presence of at least mild levels 54 of depression. One in four suicide-bereaved family members (27.3%) that indicated the 55 56 presence of at least mild levels of stress. Just under a fifth of participants (18.2%) had scores 57 58 17 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 18 of 30
1 2 3 that indicated the presence of at least mild levels of anxiety (Table 2). These outcomes refer 4 5 to participants’ wellbeing in the week before the interview. 6 7 8 9 10 11 12 13 14 Table 2: Descriptive statistics of DASS-21 scale scores 15 Median (IQR) Range Above “normal” cut-off N (%)1 16 For peer review only 17 Depression score 4.00 (8.00) 0-34 8 (24.2) 18 19 Anxiety score 2.00 (5.00) 0-24 6 (18.2) 20 Stress score 12.00 (11.00) 0-28 9 (27.3) 21 22 Total score 18.00 (26.00) 0-76 23
24 25 A Mann-Whitney U test revealed no significant difference in the levels of depression (p = 26 27 .47), anxiety (p = .37) and stress (p = .81) between suicide-bereaved males and females 28 29 (Table 3). A Mann-Whitney U test also revealed no significant differences for levels of 30
depression (p = .43), anxiety (p = .45) and stress (p = .61) between those bereaved by http://bmjopen.bmj.com/ 31 32 hanging and non-hanging suicides (Table 3). 33 34 35 Table 3: DASS-21 median rank scores by gender and method of suicide 36 2 37 Males Females p Hanging Non-hanging p 38
N = 15 N = 18 N = 19 N = 14 on September 30, 2021 by guest. Protected copyright. 39 40 Variable Median (IQR) 41 42 Depression score 4.00 (10.00) 4.00 (7.00) .47 4.00 (6.00) 4.00 (13.00) .43 43 Anxiety score 2.00 (2.00) 3.00 (14.00) .37 2.00 (6.00) 2.00 (6.00) .45 44 45 Stress score 12.00 (12.00) 11.00 (11.00) .81 10.00 (10.00) 13.00 (13.00) .61 46 Total score 18.00 (26.00) 18.00 (32.00) .93 18.00 (14.00) 19.00 (29.00) .74 47 48 49 50 DISCUSSION 51 52 Principal findings 53 54
55 1 Scores of ≥10 for depression, ≥8 for anxiety and ≥15 for stress 56 2 Includes every other method besides hanging 57 58 18 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 19 of 30 BMJ Open
1 2 3 The qualitative and quantitative aspects of this study provides insight into the 4 5 unique grief processes and health impacts experienced by family members bereaved by 6 suicide. The qualitative study further addresses a significant gap in the literature by 7 8 exploring the physical, psychosomatic health experiences and health behaviours of suicide- 9 10 bereaved family members. Results from the quantitative component of this study indicate 11 that a sizeable minority of suicide-bereaved family members experienced elevated levels of 12 13 depression, anxiety, and stress. Other empirical studies have found similar rates of 14 15 depression and anxiety amongst suicide-bereaved people to the current study, with one 16 For peer review only 17 study finding that 18% of the sample were moderately to severely depressed, as measured 18 on the PHQ-9, while 21% reported anxiety symptoms on the GAD- 2[44]. Furthermore, the 19 20 prevalence of depression in family members bereaved by suicide was reported in previous 21 22 studies as 30.5%[11] and 23%[45]. Other studies of nonclinical samples of adults had lower 23 24 median scores on the DASS-21 scale when compared to the suicide-bereaved median scores 25 found in this study[46 47]. Therefore, this indicates that those bereaved by suicide may have 26 27 higher rates of depression, anxiety and stress compared to nonclinical adult samples. 28 29 One possible explanation for the lower than expected prevalence of depression, 30 31 anxiety and/or stress in our sample may be selection bias. Those family members who chose http://bmjopen.bmj.com/ 32 33 to take part in the study may have had lower levels of psychopathology or difficulties with 34 the grieving process than other bereaved family members, and therefore may have been 35 36 more likely to take part in the study. One recent population-based study compared suicide- 37 38 bereaved parents with matched non-bereaved parents: 20.5% of suicide-bereaved parents 39 on September 30, 2021 by guest. Protected copyright. 40 refused to take part or to complete the study on the grounds of distress or ill-health, 41 compared to just 7.6% of non-suicide bereaved parents[44]. This suggests that those who 42 43 agree to take part in suicide bereavement research may be in better health than those who 44 45 declined to participate. Consequently, the number of suicide-bereaved people experiencing 46 47 high levels of depression, anxiety, and/or stress in this study and other empirical research 48 may be an underestimate of the true figure. 49 50 51 Findings from the qualitative interviews indicate that the initial feelings experienced 52 by family members bereaved by suicide include disbelief, shock, blame, guilt and anger. 53 54 These mirror findings from other qualitative studies [30]. Our qualitative and quantitative 55 56 results indicate that suicide-bereaved family members experience a number of adverse 57 58 19 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 20 of 30
1 2 3 psychological problems including, depression, anxiety, panic attacks, suicidal thoughts, 4 5 intrusive images, nightmares and PTSD. In addition, a number of participants also 6 experienced adverse psychosomatic health experiences including feelings of nausea, 7 8 vomiting, chest pains, palpitations, physical pain, abdominal pains, and breathlessness. In 9 10 some cases, these symptoms continued in the months after the death and were associated 11 with diagnoses such as hypertension, diverticulitis and type 1 diabetes. Bolton and 12 13 colleagues[11] took a quantitative approach and similarly found that suicide-bereaved 14 15 parents had significantly higher rates of cardiovascular disease, chronic obstructive 16 For peer review only 17 pulmonary disease, hypertension, diabetes, depression and anxiety disorders compared 18 accident-bereaved parents. Therefore, this study corroborates these previous findings that 19 20 people bereaved by suicide can experience adverse physical and psychological health 21 22 outcomes. 23 24 The quantitative and particularly the qualitative component of this study illustrate 25 26 the difficulties encountered by family members bereaved by suicide and consequently, the 27 28 support they require. Research compiled by Grad and colleagues[48] underlies the 29 importance of those bereaved by suicide having the opportunity to seek support from 30 31 outside the family. Some participants spoke of the desire to attend a suicide support group. http://bmjopen.bmj.com/ 32 33 However, there is little research on the effectiveness of these groups for those bereaved by 34 suicide[49]. It was also clear from the interviews that financial difficulties in the aftermath of 35 36 the suicide were unfortunately common and prevented many from accessing formal support 37 38 services. Participants spoke about having to halt their counselling sessions due to a lack of 39 on September 30, 2021 by guest. Protected copyright. 40 money to pay for the service. Reasons for financial difficulties varied and included inheriting 41 debts accrued by the deceased prior to the death or having to give up or take a break from 42 43 work due to grieving difficulties. Another study found that duration of support was 44 45 important, with 27% of people believing they required professional help for at least 12 46 47 months following the death. Furthermore, 25% and 17.4% reported needing support for at 48 least two years, or for as long as required[26]. These points underlie the importance of not 49 50 only providing timely and effective support to people bereaved by suicide but also support 51 52 that does not preclude people due to their financial circumstances. 53 54 Strengths and limitations 55 56 57 58 20 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 21 of 30 BMJ Open
1 2 3 This is the first mixed-methods study to specifically examine and explore the physical and 4 5 psychological health implications of suicide bereavement from both a quantitative and a 6 qualitative perspective. The quantitative data for this study was derived from the larger 7 8 SSIS-ACE case-control study which included consecutive cases of suicide and open verdict 9 10 cases that met the Rosenberg criteria for the determination of suicide [34]. The validity of 11 this research can be considered good as this research covered both confirmed suicide 12 13 deaths and open verdicts deaths as these may in fact be hidden suicide cases[50-52]. 14 15 Furthermore, researchers have recommended that such cases meeting criteria for a 16 For peer review only 17 probable suicide should be included in future research studies[51]. While the numbers of 18 suicide-bereaved family members in the study is modest, the quantitative results are similar 19 20 to those obtained in larger studies, as previously stated[11 45]. The interviewer for the 21 22 qualitative component of the study (AS) did not conduct any of the interviews for the SSIS- 23 24 ACE study, which minimises the risk of interviewer bias in the mixed-methods study. This 25 study has two main limitations. Firstly, family members’ physical health experiences were 26 27 self-reported and therefore do not constitute an objective measure. An objective measure 28 29 of physical health would remove any potential for recall bias in participants’ responses. 30
However, the focus of the qualitative component of the study is to understand family http://bmjopen.bmj.com/ 31 32 member’s experience of their own health, rather than objective health status. Secondly, the 33 34 relatively small quantitative sample size did not allow for more sophisticated statistical 35 36 analyses, including controlling for potential confounding factors such as closeness to the 37 deceased, kinship and time since death which may have impacted on the results presented. 38 39 Further mixed-methods research examining an objective measure of physical health would on September 30, 2021 by guest. Protected copyright. 40 41 be a significant addition to the knowledge base. 42 43 Implications 44 45 Considering previous research in the area, this study adds to the existing knowledge-base in 46 47 a number of ways. While the mental health outcomes of suicide bereavement have been 48 49 well-researched, there has been a dearth of research specifically examining the physical and 50 51 psychosomatic health outcomes of suicide bereavement from an experiential perspective. 52 Several implications arise from this research for professionals seeking to support people 53 54 bereaved by suicide. First, equal attention needs to be given to the physical and emotional 55 56 sequelae following suicide bereavement by clinicians. This research suggests that one in 57 58 21 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 22 of 30
1 2 3 four people bereaved by suicide will suffer elevated levels of depression and stress and just 4 5 under one in five will have elevated levels of anxiety. Additionally, a recent systematic 6 review noted that there is tentative evidence to suggest that suicide-bereaved family 7 8 members have an increased risk for a number of adverse physical health outcomes 9 10 compared to people bereaved by other causes of death[11 16-18 53]. Second, it was clear 11 that, due to mental and physical health difficulties, some people were not able to effectively 12 13 identify or seek support. This underlies the importance of health professionals, coroners and 14 15 any other professional to pro-actively facilitate support for those bereaved by suicide. This 16 For peer review only 17 professional support is especially important when strained or fractured familial relations 18 affect the quality of the bereaved person’s informal support network. 19 20 21 Author affiliations 22 1 23 Department of Epidemiology and Public Health, University College Cork, Cork, Ireland 24 25 2National Suicide Research Foundation, University College Cork, Cork, Ireland 26 27 3Department of Emergency Medicine, University of Massachusetts Medical School, 28 29 Worcester, MA, USA 30 http://bmjopen.bmj.com/ 31 4 Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland 32 33 34 Acknowledgements 35 36 The authors would like to thank all of those who took the time to take part in the interviews. 37 The authors would also like to acknowledge Dr Christina Dillon for her guidance with respect 38 39 to the quantitative data analysis. on September 30, 2021 by guest. Protected copyright. 40 41 Author’s contribution 42 43 AS drafted the initial protocol document. AS, CL, EA and PC contributed to the design of the 44 45 study. KMS, CL, PC and EA contributed to planned analyses. KMS, CL, EA and PC contributed 46 47 to revising drafts. All authors contributed to the final manuscript. 48 49 Funding statement 50 51 This work was conducted as part of the SPHeRE Programme under Grant No. 52 53 SPHeRE/2013/1. I would also like to acknowledge the funding received from the Health 54 Research Board to conduct the original SSIS-ACE case-control study, Grant No. HRA-2013- 55 56 57 58 22 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 23 of 30 BMJ Open
1 2 3 PHR-438 and the National Office for Suicide Prevention for providing funding for the 4 5 supervision of this research. 6 7 Competing interests 8 9 None 10 11 Exclusive licence statement 12 13 The Corresponding Author has the right to grant on behalf of all authors and does grant on 14 behalf of all authors, a worldwide licence to the Publishers and its licensees in perpetuity, in 15 16 all forms, formatsFor and media peer (whether reviewknown now or created only in the future), to i) publish, 17 18 reproduce, distribute, display and store the Contribution, ii) translate the Contribution into 19 other languages, create adaptations, reprints, include within collections and create 20 21 summaries, extracts and/or, abstracts of the Contribution, iii) create any other derivative 22 23 work(s) based on the Contribution, iv) to exploit all subsidiary rights in the Contribution, v) 24 25 the inclusion of electronic links from the Contribution to third party material where-ever it 26 may be located; and, vi) licence any third party to do any or all of the above. 27 28 29 Ethical approval 30 31 Ethical approval has been granted from the Clinical Research Ethics Committee of University http://bmjopen.bmj.com/ 32 33 College Cork, reference number: ECM 4 (o) 19/01/2016.Ethical approval was also granted 34 from the Clinical Research Ethics Committee of University College Cork, for the SSIS-ACE 35 36 study, reference number: ECM 5(5) 01/04/2014. 37 38 39 Data sharing statement on September 30, 2021 by guest. Protected copyright. 40 41 The data recorded, transcribed and analysed is very sensitive in nature. Due to the relatively 42 43 small number of participants and the specific geographic location, it would not be 44 appropriate to consider data sharing due to the risk of people being potentially identified. 45 46 47 References 48 1. World Health Organisation. Preventing Suicide: A Global Imperative. Luxembourg, 2014:89. 49 2. Berman AL. Estimating the Population of Survivors of Suicide: Seeking an Evidence Base. Suicide 50 51 Life Threat. Behav. 2011;41(1):110-16 doi: 10.1111/j.1943-278X.2010.00009.x[published 52 Online First: Epub Date]|. 53 3. Andriessen K, Rahman B, Draper B, Dudley M, Mitchell PB. Prevalence of exposure to suicide: A 54 meta-analysis of population-based studies. J. Psychiatr. Res. 2017;88:113-20 doi: 55 http://dx.doi.org/10.1016/j.jpsychires.2017.01.017[published Online First: Epub Date]|. 56 57 58 23 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 24 of 30
1 2 3 4. Pitman A, Osborn D, King M, Erlangsen A. Effects of suicide bereavement on mental health and 4 suicide risk. The Lancet Psychiatry 2014;1(1):86-94 doi: 10.1016/s2215-0366(14)70224- 5 x[published Online First: Epub Date]|. 6 5. Rostila M, Saarela J, Kawachi I. Suicide following the death of a sibling: a nationwide follow-up 7 study from Sweden. BMJ Open 2013;3(4) doi: 10.1136/bmjopen-2013-002618[published 8 Online First: Epub Date]|. 9 6. Pitman AL, Osborn DPJ, Rantell K, King MB. Bereavement by suicide as a risk factor for suicide 10 attempt: a cross-sectional national UK-wide study of 3432 young bereaved adults. BMJ Open 11 2016;6(1) doi: 10.1136/bmjopen-2015-009948[published Online First: Epub Date]|. 12 7. Wilcox HC, Kuramoto SJ, Lichtenstein P, Långström N, Brent DA, Runeson B. Psychiatric morbidity, 13 violent crime, and suicide among children and adolescents exposed to parental death. J. Am. 14 Acad. Child Adolesc. Psychiatry 2010;49(5):514-23 15 8. Mittendorfer-Rutz E, Rasmussen F, Lange T. A life-course study on effects of parental markers of 16 morbidityFor and mortality peer on offspring's review suicide attempt. PLoSonly One 2012;7(12):e51585 doi: 17 18 10.1371/journal.pone.0051585[published Online First: Epub Date]|. 19 9. Mittendorfer-Rutz E, Rasmussen F, Wasserman D. Familial clustering of suicidal behaviour and 20 psychopathology in young suicide attempters. Soc. Psychiatry Psychiatr. Epidemiol. 21 2008;43(1):28-36 doi: 10.1007/s00127-007-0266-0[published Online First: Epub Date]|. 22 10. Brent D, Melhem N, Donohoe MB, Walker M. The incidence and course of depression in 23 bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural 24 death. Am. J. Psychiatry 2009;166(7):786-94 doi: 10.1176/appi.ajp.2009.08081244[published 25 Online First: Epub Date]|. 26 11. Bolton JM, Au W, Leslie WD, et al. Parents bereaved by offspring suicide: a population-based 27 longitudinal case-control study. JAMA Psychiatry 2013;70(2):158-67 doi: 28 10.1001/jamapsychiatry.2013.275[published Online First: Epub Date]|. 29 12. Ellenbogen S, Gratton F. Do They Suffer More? Reflections on Research Comparing Suicide 30 Survivors to Other Survivors. Suicide Life Threat. Behav. 2001;31(1):83-90 doi: 31 10.1521/suli.31.1.83.21315[published Online First: Epub Date]|. http://bmjopen.bmj.com/ 32 13. Pitman AL, Osborn DP, Rantell K, King MB. The stigma perceived by people bereaved by suicide 33 and other sudden deaths: A cross-sectional UK study of 3432 bereaved adults. J. Psychosom. 34 Res. 2016;87:22-9 doi: 10.1016/j.jpsychores.2016.05.009[published Online First: Epub 35 Date]|. 36 14. Xu G, Li N. A comparison study on mental health status between suicide survivors and survivors 37 of accidental deaths in rural China. J. Psychiatr. Ment. Health Nurs. 2014;21(10):859-65 38 39 15. Erlangsen A, Runeson B, Bolton JM, et al. Association between spousal suicide and mental, on September 30, 2021 by guest. Protected copyright. 40 physical, and social health outcomes: A longitudinal and nationwide register-based study. 41 JAMA Psychiatry 2017 doi: 10.1001/jamapsychiatry.2017.0226[published Online First: Epub 42 Date]|. 43 16. Miyabayashi S, Yasuda J. Effects of loss from suicide, accidents, acute illness and chronic illness 44 on bereaved spouses and parents in Japan: Their general health, depressive mood, and grief 45 reaction. Psychiatry Clin. Neurosci. 2007;61(5):502-08 46 17. de Groot MH, de Keijser J, Neeleman J. Grief Shortly After Suicide And Natural Death: A 47 Comparative Study Among Spouses and First-Degree Relatives. Suicide Life Threat. Behav. 48 2006;36(4):418-31 doi: 10.1521/suli.2006.36.4.418[published Online First: Epub Date]|. 49 18. Séguin M, Lesage A, Kiely MC. Parental Bereavement After Suicide and Accident: A Comparative 50 Study. Suicide Life Threat. Behav. 1995;25(4):489-98 doi: 10.1111/j.1943- 51 278X.1995.tb00241.x[published Online First: Epub Date]|. 52 19. Pitman AL, Hunt IM, McDonnell SJ, Appleby L, Kapur N. Support for Relatives Bereaved by 53 Psychiatric Patient Suicide: National Confidential Inquiry Into Suicide and Homicide Findings. 54 Psychiatr. Serv. 2016:appi.ps.201600004 doi: 10.1176/appi.ps.201600004[published Online 55 First: Epub Date]|. 56 57 58 24 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 25 of 30 BMJ Open
1 2 3 20. Pitman AL, Rantell K, Moran P, et al. Support received after bereavement by suicide and other 4 sudden deaths: a cross-sectional UK study of 3432 young bereaved adults. BMJ Open 5 2017;7(5) doi: 10.1136/bmjopen-2016-014487[published Online First: Epub Date]|. 6 21. Pettersen R, Omerov P, Steineck G, et al. Suicide-Bereaved Siblings' Perception of Health 7 Services. Death Stud. 2015;39(6):323-31 9p doi: 10.1080/07481187.2014.946624[published 8 Online First: Epub Date]|. 9 22. McMenamy JM, Jordan JR, Mitchell AM. What do Suicide Survivors Tell Us They Need? Results of 10 a Pilot Study. Suicide Life Threat. Behav. 2008;38(4):375-89 doi: 11 10.1521/suli.2008.38.4.375[published Online First: Epub Date]|. 12 23. Dyregrov K. What do we know about needs for help after suicide in different parts of the world? 13 A phenomenological perspective. Crisis 2011;32(6):310-8 doi: 10.1027/0227- 14 5910/a000098[published Online First: Epub Date]|. 15 24. Dyregrov K. Assistance from local authorities versus survivors' needs for support after suicide 16 Death Stud.For 2002;26 (8):647-68peer doi: review10.1080/07481180290088356[published only Online First: 17 18 Epub Date]|. 19 25. Brown J, Evans-Lacko S, Aschan L, Henderson MJ, Hatch SL, Hotopf M. Seeking informal and 20 formal help for mental health problems in the community: a secondary analysis from a 21 psychiatric morbidity survey in South London. BMC Psychiatry 2014;14(1):275 doi: 22 10.1186/s12888-014-0275-y[published Online First: Epub Date]|. 23 26. Wilson A, Marshall A. The support needs and experiences of suicidally bereaved family and 24 friends. Death Stud. 2010;34(7):625-40 25 27. Sugrue JL, McGilloway S, Keegan O. The Experiences of Mothers Bereaved by Suicide: An 26 Exploratory Study. Death Stud. 2013;38(2):118-24 doi: 27 10.1080/07481187.2012.738765[published Online First: Epub Date]|. 28 28. McKinnon JM, Chonody J. Exploring the Formal Supports Used by People Bereaved Through 29 Suicide: A Qualitative Study. Social Work in Mental Health 2014;12(3):231-48 doi: 30 10.1080/15332985.2014.889637[published Online First: Epub Date]|. 31 29. Hjelmeland H, Knizek BL. Why we need qualitative research in suicidology. Suicide Life Threat. http://bmjopen.bmj.com/ 32 Behav. 2010;40(1):74-80 doi: 10.1521/suli.2010.40.1.74[published Online First: Epub Date]|. 33 30. Shields C, Kavanagh M, Russo K. A Qualitative Systematic Review of the Bereavement Process 34 Following Suicide. Omega: Journal of Death & Dying 2017;74(4):426-54 doi: 35 10.1177/0030222815612281[published Online First: Epub Date]|. 36 31. Rogers J, Apel S. Revitalizing suicidology: A call for mixed methods designs. Suicidology Online 37 2010;1:95-98 38 39 32. Creswell JW. A Concise Introduction to Mixed Methods Research. Los Angeles: SAGE Publications, on September 30, 2021 by guest. Protected copyright. 40 2015. 41 33. Spillane A, Larkin C, Corcoran P, Matvienko-Sikar K, Arensman E. What are the physical and 42 psychological health effects of suicide bereavement on family members? Protocol for an 43 observational and interview mixed-methods study in Ireland. BMJ Open 2017;7(3):e014707 44 doi: 10.1136/bmjopen-2016-014707[published Online First: Epub Date]|. 45 34. Rosenberg ML, Davidson LE, Smith JC, et al. Operational criteria for the determination of suicide. 46 J. Forensic Sci. 1988;33(6):1445-56 47 35. Isometsä ET. Psychological autopsy studies – a review. Eur. Psychiatry 2001;16(7):379-85 doi: 48 http://dx.doi.org/10.1016/S0924-9338(01)00594-6[published Online First: Epub Date]|. 49 36. Conner KR, Beautrais AL, Brent DA, Conwell Y, Phillips MR, Schneider B. The next generation of 50 psychological autopsy studies. Part I. Interview content. Suicide Life Threat. Behav. 51 2011;41(6):594-613 doi: 10.1111/j.1943-278X.2011.00057.x[published Online First: Epub 52 Date]|. 53 37. Freuchen A, Kjelsberg E, Grøholt B. Suicide or accident? A psychological autopsy study of suicide 54 in youths under the age of 16 compared to deaths labeled as accidents. Child and adolescent 55 56 57 58 25 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 26 of 30
1 2 3 psychiatry and mental health 2012;6:30-30 doi: 10.1186/1753-2000-6-30[published Online 4 First: Epub Date]|. 5 38. Wong PWC, Chan WSC, Chen EYH, Chan SSM, Law YW, Yip PSF. Suicide among adults aged 30– 6 49: A psychological autopsy study in Hong Kong. BMC Public Health 2008;8:147-47 doi: 7 10.1186/1471-2458-8-147[published Online First: Epub Date]|. 8 39. Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the 9 Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. 10 Behav. Res. Ther. 1995;33(3):335-43 11 40. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety & Stress Scales. 2nd Edition ed. 12 Sydney Psychology Foundation 1995. 13 41. Cheung T, Wong SY, Wong KY, et al. Depression, Anxiety and Symptoms of Stress among 14 Baccalaureate Nursing Students in Hong Kong: A Cross-Sectional Study. Int. J. Environ. Res. 15 Public Health 2016;13(8) doi: 10.3390/ijerph13080779[published Online First: Epub Date]|. 16 42. Parkitny L, McAuleyFor J. The peer Depression Anxiety review Stress Scale (DASS). only J. Physiother. 2010;56(3):204 17 18 doi: 10.1016/S1836-9553(10)70030-8[published Online First: Epub Date]|. 19 43. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 20 2006;3(2):77-101 doi: 10.1191/1478088706qp063oa[published Online First: Epub Date]|. 21 44. Omerov P, Steineck G, Dyregrov K, Runeson B, Nyberg U. The ethics of doing nothing. Suicide- 22 bereavement and research: ethical and methodological considerations. Psychol. Med. 23 2014;44(16):3409-20 24 45. Melhem NM, Walker M, Moritz G, Brent DA. Antecedents and sequelae of sudden parental death 25 in offspring and surviving caregivers. Arch. Pediatr. Adolesc. Med. 2008;162(5):403-10 doi: 26 10.1001/archpedi.162.5.403[published Online First: Epub Date]|. 27 46. Sinclair SJ, Siefert CJ, Slavin-Mulford JM, Stein MB, Renna M, Blais MA. Psychometric evaluation 28 and normative data for the depression, anxiety, and stress scales-21 (DASS-21) in a 29 nonclinical sample of U.S. adults. Eval. Health Prof. 2012;35(3):259-79 doi: 30 10.1177/0163278711424282[published Online First: Epub Date]|. 31 47. Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): http://bmjopen.bmj.com/ 32 Construct validity and normative data in a large non-clinical sample. Br. J. Clin. Psychol. 33 2005;44(2):227-39 doi: 10.1348/014466505X29657[published Online First: Epub Date]|. 34 48. Grad OT, Clark S, Dyregrov K, Andriessen K. What helps and what hinders the process of surviving 35 the suicide of somebody close? Crisis 2004;25(3):134-9 doi: 10.1027/0227- 36 5910.25.3.134[published Online First: Epub Date]|. 37 49. Andriessen K, Krysinska K. Essential questions on suicide bereavement and postvention. 38 39 International Journal of Environmental Research & Public Health [Electronic Resource] on September 30, 2021 by guest. Protected copyright. 40 2012;9(1):24-32 41 50. Pritchard C, Hansen L. Examining undetermined and accidental deaths as source of 'under- 42 reported-suicide' by age and sex in twenty Western countries. Community Ment. Health J. 43 2015;51(3):365-76 doi: 10.1007/s10597-014-9810-z[published Online First: Epub Date]|. 44 51. Bakst SS, Braun T, Zucker I, Amitai Z, Shohat T. The accuracy of suicide statistics: are true suicide 45 deaths misclassified? Soc. Psychiatry Psychiatr. Epidemiol. 2016;51(1):115-23 doi: 46 10.1007/s00127-015-1119-x[published Online First: Epub Date]|. 47 52. Chang SS, Sterne JA, Lu TH, Gunnell D. 'Hidden' suicides amongst deaths certified as 48 undetermined intent, accident by pesticide poisoning and accident by suffocation in Taiwan. 49 Soc. Psychiatry Psychiatr. Epidemiol. 2010;45(2):143-52 doi: 10.1007/s00127-009-0049- 50 x[published Online First: Epub Date]|. 51 53. Dyregrov K, Nordanger D, Dyregrov A. Predictors of psychosocial distress after suicide, SIDS and 52 accidents. Death Stud. 2003;27(2):143-65 doi: 10.1080/07481180302892[published Online 53 First: Epub Date]|. 54 55 56 57 58 26 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 27 of 30 BMJ Open
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 Figure 1: Flowchart of recruitment process for SSIS-ACE study 46 47 232x339mm (300 x 300 DPI) 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 28 of 30
1 2 3 Consolidated criteria for reporting qualitative studies (COREQ): 4 5 32-item checklist 6 7 Developed from: 8 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 9 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 10 2007. Volume 19, Number 6: pp. 349 œ 357 11 12 YOU MUST PROVIDE A RESPONSE FOR ALL ITEMS. ENTER N/A IF NOT 13 APPLICABLE 14 15 No. Item Guide questions/description Reported on 16 For peer review only Page # 17 Domain 1: Research team 18 and refiexivity 19 Personal Characteristics 20 21 1. Inter viewer/facilitator Which author/s conducted the inter view or 6 (in protocol) 22 focus group? 23 2. Credentials What were the researcher‘s credentials? 6 (in protocol) 24 E.g. PhD, MD 25 3. Occupation What was their occupation at the time of 6 (in protocol) 26 the study? 27 4. Gender Was the researcher male or female? 6 (in protocol) 28 5. Experience and training What experience or training did the 6 (in protocol) 29 researcher have? 30 Relationship with http://bmjopen.bmj.com/ 31 participants 32 6. Relationship established Was a relationship established prior to 3 (in protocol) 33 study commencement? 34 35 7. Participant knowledge of What did the participants know about the 4 (in protocol) 36 the interviewer researcher? e.g. personal goals, reasons 37 for doing the research 38 8. Interviewer What characteristics were reported about 6 (in protocol) 39 characteristics the inter viewer/facilitator? e.g. Bias, on September 30, 2021 by guest. Protected copyright. 40 assumptions, reasons and interests in the 41 research topic 42 Domain 2: study design 43 Theoretical framework 44 9. Methodological What methodological orientation was 3 (in protocol) 45 orientation and Theory stated to underpin the study? e.g. 46 grounded theory, discourse analysis, 47 ethnography, phenomenology, content 48 analysis 49 Participant selection 50 51 10. Sampling How were participants selected? e.g. 5-6 52 purposive, convenience, consecutive, 53 snowball 54 11. Method of approach How were participants approached? e.g. 5 55 face-to-face, telephone, mail, email 56 12. Sample size How many participants were in the study? 5-6, 9 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 29 of 30 BMJ Open
1 2 3 13. Non-participation How many people refused to participate or 7 4 dropped out? Reasons? 5 Setting 6 7 14. Setting of data Where was the data collected? e.g. home, 8 8 collection clinic, workplace 9 15. Presence of non- Was anyone else present besides the 3 (in protocol) 10 participants participants and researchers? 11 16. Description of sample What are the important characteristics of 9, 16-17 12 the sample? e.g. demographic data, date 13 Data collection 14 17. Interview guide Were questions, prompts, guides provided 5 (in protocol) 15 by the authors? Was it pilot tested? 16 18. Repeat interviewsFor peer Were repeat review inter views carri onlyed out? If yes, 5 17 how many? 18 19. Audio/visual recording Did the research use audio or visual 5 19 recording to collect the data? 20 20. Field notes Were ›eld notes made during and/or after 4 21 22 the inter view or focus group? 23 21. Duration What was the duration of the inter views or 8 24 focus group? 25 22. Data saturation Was data saturation discussed? 4 26 23. Transcripts returned Were transcripts returned to participants 6 (in protocol) 27 for comment and/or correction? 28 Domain 3: analysis and 29 ›ndings 30 Data analysis http://bmjopen.bmj.com/ 31 24. Number of data coders How many data coders coded the data? 9 32 25. Description of the Did authors provide a description of the 9 33 coding tree coding tree? 34 35 26. Derivation of themes Were themes identi›ed in advance or 5-6 (in protocol), 9 36 derived from the data? 37 27. Software What software, if applicable, was used to 9 38 manage the data? 39 28. Participant checking Did participants provide feedback on the 6 (in protocol) on September 30, 2021 by guest. Protected copyright. 40 ›ndings? 41 Reporting 42 29. Quotations presented Were participant quotations presented to 9 43 illustrate the themes/›ndings? Was each 44 quotation identi›ed? e.g. participant 45 number 46 30. Data and ›ndings Was there consistency between the data 19-20 47 consistent presented and the ›ndings? 48 31. Clarity of major themes Were major themes clearly presented in 9-16 49 50 the ›ndings? 51 32. Clarity of minor themes Is there a description of diverse cases or 9-16 52 discussion of minor themes? 53 54 Once you have completed this checklist, please save a copy and upload it as part 55 of your submission. When requested to do so as part of the upload process, 56 please select the file type: Checklist. You will NOT be able to proceed with 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 30 of 30
1 2 3 submission unless the checklist has been uploaded. Please DO NOT include this 4 checklist as part of the main manuscript document. It must be uploaded as a 5 separate file. 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open
What are the physical and psychological health effects of suicide bereavement on family members? An observational and interview mixed-methods study in Ireland
ForJournal: peerBMJ Open review only Manuscript ID bmjopen-2017-019472.R1
Article Type: Research
Date Submitted by the Author: 10-Nov-2017
Complete List of Authors: Spillane, Ailbhe; University College Cork National University of Ireland, School of Public Health; National Suicide Research Foundation Matvienko-Sikar, Karen; University College Cork National University of Ireland, School of Public Health Larkin, Celine; University of Massachusetts Medical School Department of Medicine, Department of Emergency Medicine Corcoran, Paul; University College Cork, School of Public Health; Cork University Maternity Hospital, Department of Obstetrics and Gynaecology Arensman, Ella ; University College Cork National University of Ireland, School of Public Health; National Suicide Research Foundation http://bmjopen.bmj.com/ Primary Subject Mental health Heading:
Secondary Subject Heading: Public health, Qualitative research, Health services research
Keywords: Mixed-methods, Suicide bereavement, Family members, Morbidity, Health
on September 30, 2021 by guest. Protected copyright.
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1 2 3 What are the physical and psychological health effects of suicide bereavement on family 4 5 members? An observational and interview mixed-methods study in Ireland 6 7 8 9 Ailbhe Spillane1 2*, Karen Matvienko-Sikar1, Celine Larkin3, Paul Corcoran1,4, Ella Arensman1,2 10 11 12 13 14 *Corresponding author: Ms Ailbhe Spillane ([email protected]; 00353 21 4205544) 15 16 For peer review only 17 th 18 1. School of Public Health, 4 Floor Western Gateway Building, Western Road, Cork, 19 Ireland 20
21 22 2. National Suicide Research Foundation, Room 4.28, Western Gateway Building, 23 Western Road, Cork, Ireland 24 25 26 27 3. Department of Emergency Medicine, University of Massachusetts Medical School, 28 Worcester, MA, USA 29 30 31 4. Department of Obstetrics and Gynaecology, Cork University Maternity Hospital, 5th http://bmjopen.bmj.com/ 32 Floor, Wilton, Cork, Ireland 33 34 35 36 Keywords: mixed-methods, suicide bereavement, family members, morbidity, health 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 Word count: 7,090 41 42 43 44 45 46 47 48 49 50 51 52
53 54 55 56 ABSTRACT 57 58 1 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 2 of 33
1 2 3 Objectives: Research focussing on the impact of suicide bereavement on family members’ 4 5 physical and psychological health is scarce. The aim of this study was to examine how family 6 members have been physically and psychologically affected following suicide bereavement. 7 8 A secondary objective of the study was to describe the needs of family members bereaved 9 10 by suicide. 11 12 Design: A mixed-methods study was conducted, using qualitative semi-structured interviews 13 14 and additional quantitative self-report measures of depression, anxiety and stress (DASS- 15 21). 16 For peer review only 17 18 Setting: Consecutive suicide cases and next-of-kin were identified by examining coroner’s 19 20 records in Cork City and County, Ireland from October 2014 to May 2016. 21 22 Participants: Eighteen family members bereaved by suicide took part in a qualitative 23 24 interview. They were recruited from the Suicide Support and Information System: A Case- 25 Control Study (SSIS-ACE) where family members bereaved by suicide (n = 33) completed 26 27 structured measures of their wellbeing. 28 29 Results: Qualitative findings indicated three superordinate themes in relation to 30 31 experiences following suicide bereavement: (1) Co-occurrence of grief and health reactions; http://bmjopen.bmj.com/ 32 33 (2) disparity in supports after suicide; and (3) reconstructing life after deceased’s suicide. 34 35 Initial feelings of guilt, blame, shame and anger often manifested in enduring physical, 36 psychological and psychosomatic difficulties. Support needs were diverse and were often 37 38 related to the availability or absence of informal support by family or friends. Quantitative 39 on September 30, 2021 by guest. Protected copyright. 40 results indicated that the proportion of respondents above the DASS-21 cut-offs 41 42 respectively were 24% for depression, 18% for anxiety and 27% for stress. 43 44 Conclusions: Healthcare professionals’ awareness of the adverse physical and 45 46 psychosomatic health difficulties experienced by family members bereaved by suicide is 47 essential. Pro-actively facilitating support for this group could help to reduce the negative 48 49 health sequelae. The effects of suicide bereavement are wide-ranging, including high levels 50 51 of stress, depression, anxiety, and physical health difficulties. 52 53 54 55
56 57 58 2 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 3 of 33 BMJ Open
1 2 3 Strengths and limitations of the study 4 5 ñ This study addressed a specific knowledge gap by examining the physical and 6 psychological health effects of suicide bereavement on family members in Ireland 7 8 ñ The study covered consecutive cases of suicide, which increases the external validity 9 10 of the outcomes 11 12 ñ This study screened open verdict deaths with validated screening criteria to identify 13 probable suicides. Therefore, this study benefits from the inclusion of probable 14 15 suicide cases that would otherwise have not been included in the study 16 For peer review only 17 ñ Physical health issues were self-reported and were not objectively measured 18 19 INTRODUCTION 20 21 Suicide is a significant global concern, with approximately 800,000 people taking their own 22 23 lives every year[1]. Consequently, for every suicide, up to 60 people are intimately 24 25 affected[2]. Recent research also indicates that 1 in 20 people have experienced a suicide in 26 the past year, and 1 in 5 during their lifetime[3]. Quantitative research has highlighted 27 28 adverse mental health outcomes of suicide bereavement, including heightened risk of 29 30 suicide[4-6], attempted suicide[6-9], depression[10 11], psychiatric morbidity[7] and 31 http://bmjopen.bmj.com/ 32 psychiatric admission[11]. However, qualitative research examining physical and 33 psychosomatic health morbidity in the aftermath of suicide bereavement is sparse. 34 35 36 To date, several quantitative studies have been conducted to investigate whether 37 suicide bereavement confers a higher risk of physical morbidity compared to other causes of 38 39 death [4 6 12-15]. People bereaved by suicide had poorer general health[16 17], reported on September 30, 2021 by guest. Protected copyright. 40 41 more pain[17], reported more physical illnesses[18] and disorders including cardiovascular 42 disease, chronic obstructive pulmonary disease, hypertension and diabetes[11]. In addition, 43 44 suicide-bereaved family members visited a GP more often[18] and had significantly higher 45 46 rates of outpatient physician visits for physical illnesses[11] than non-suicide bereaved 47 48 individuals. These negative health outcomes illustrate the importance of timely and 49 effective health services and psychosocial supports for those bereaved by suicide, many of 50 51 whom may carry existing health adversities prior to the death[11]. 52 53 Previous research has emphasised the importance of access to support for people 54 55 bereaved by suicide [19 20]. Feelings of depression, anxiety, guilt, extreme sadness, anger 56 57 58 3 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 4 of 33
1 2 3 and nightmares motivate help-seeking in people bereaved by suicide[21 22]. Some research 4 5 has been conducted to explore the perceived needs of family members bereaved by suicide. 6 Both formal support, in the form of health service use, and informal support help from 7 8 friends, families or other non-medical sources, were found to be important. It is critical to 9 10 consider that each type of support addresses different needs[23-25]. A quarter of those 11 bereaved by sudden natural death reported that they were most affected by the death in 12 13 the first week[20]. One third of those bereaved by unnatural causes of death reported that 14 15 they were most affected in the first six months following the death[20]. One study noted 16 For peer review only 17 that first-degree relatives had greater need for formal support than second-degree and non- 18 relatives[26]. Compared to those bereaved by sudden natural causes of death, people 19 20 bereaved by suicide were less likely to receive informal support and immediate support 21 22 following the death, and were more likely to experience a delay in receiving support [20]. 23 24 Although a significant number of quantitative studies have examined the association 25 26 between suicide bereavement and subsequent physical health outcomes, the topic has 27 28 rarely been examined from an experiential perspective using qualitative research involving a 29 non-selective sample[27 28]. Researchers are beginning to identify the need for further 30 31 qualitative research in this area[29], to take into account the inherent complexity of grieving http://bmjopen.bmj.com/ 32 33 and social processes[12]. A recent qualitative systematic review identified three areas that 34 are important for those bereaved by suicide; feelings experienced by those bereaved by 35 36 suicide, the meaning-making process following bereavement, and the social context[30]. 37 38 Specifically, the authors note that those bereaved by suicide experienced a range of grief 39 on September 30, 2021 by guest. Protected copyright. 40 reactions, including shame, stigma, blame, guilt, emptiness and a lack of social supports 41 following the bereavement[30]. In addition, other common feelings included anger and 42 43 depression[28]. However, this review only included studies on the thematic processes of 44 45 suicide bereavement and did not report on health outcomes following suicide bereavement. 46 47 While the mental and physical health effects of suicide bereavement have been 48 49 examined in quantitative studies, they lack the detailed unique insight into the physical 50 51 health experiences of people bereaved by suicide. The primary aim of this research is to 52 examine how people have been physically and psychologically affected by a family 53 54 member’s suicide. A secondary objective of the study is to describe the support needs 55 56 required by family members bereaved by suicide. The current mixed-methods approach 57 58 4 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 5 of 33 BMJ Open
1 2 3 benefits from leveraging the advantages of both quantitative and qualitative methodological 4 5 approaches[31], while being able to provide a more comprehensive and in-depth 6 consideration of the research problem under investigation[32]. 7 8 9 METHODS 10 11 Study design and setting 12 13 This study applied a mixed-methods approach. The qualitative study was linked to a larger 14 15 case-control study, the Suicide Support and Information System: A Case-Control Study (SSIS- 16 ACE, January For 2014-March peer 2017). Qualitativereview intervie onlyws were supplemented with 17 18 quantitative data of suicide-bereaved family members’ wellbeing, which was collected as 19 20 part of the larger case-control study. Further information on the study design has been 21 22 reported elsewhere[33] and is available as supplementary file 1. 23 24 Sample and recruitment 25 26 Qualitative study 27 28 A subset of the 33 participants over the age of eighteen who took part in the SSIS-ACE study 29 30 and who consented for further follow-up were approached to take part in the qualitative 31 http://bmjopen.bmj.com/ 32 study. At the time of the qualitative study recruitment, there were 29 participants in the 33 larger study to sample from. Three of these did not provide written consent for further 34 35 follow-up and one only wanted to be contacted again by the researcher that conducted the 36 37 initial psychological autopsy interview. Therefore, 25 individuals were initially contacted via 38
a letter. Nineteen participants agreed to the interview but one participant did not consent on September 30, 2021 by guest. Protected copyright. 39 40 for the interview to be audio-recorded and was therefore excluded from the qualitative 41 42 analysis. Therefore, eighteen interviews were conducted (female = 11; male = 7), which 43 44 yielded a response rate of 75%. In one instance, two family members were interviewed 45 together at their request. No repeat interviews were conducted. Interviewees were a 46 47 spouse (n = 7), a parent (n = 5), a sibling (n = 2) and a child (n = 4). Full details of the 48 49 recruitment process are illustrated in figure 1. Mean time since bereavement during the 50 51 qualitative interviews was 27.6 months (range: 15- 38 months). Half of all family members 52 interviewed (n = 9) found the deceased’s body, while the other half (n = 9) were informed of 53 54 the death by other family members or a member of the police force. 55 56 57 58 5 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 6 of 33
1 2 3 Quantitative study 4 5 The quantitative data outlined in this paper was collected as part of a larger case- 6 7 control study (SSIS-ACE). In SSIS-ACE, a senior researcher reviewed records of consecutive 8 9 suicides and open verdict files from inquests held by all coroners in Cork, Ireland over a 19- 10 month period. Open verdict files that met the Rosenberg criteria[34] for the determination 11 12 of suicide[34] were eligible for inclusion in the study as probable suicides[33]. Relatives 13 14 were eligible to participate in an interview for the case-control study if they were well- 15 acquainted enough with the deceased to provide detailed information with respect to the 16 For peer review only 17 deceased’s life and were over the age of 14 years. Family members were contacted by letter 18 19 and then by telephone and invited to participate in the psychological autopsy interview. 20 21 ‘Psychological autopsy’ is a specific research method which involves retrospectively 22 collecting information on aspects of a suicide decedents life, including socio-demographics, 23 24 previous self-harm, mental health, physical health, personality traits and treatment 25 26 provided by health care professionals before the suicide[35]. This information is primarily 27 28 gathered via structured interviews with family or friends of the deceased and also 29 information obtained by health professionals who treated the deceased[35]. The study took 30 31 into account elements of the psychological autopsy approach according to Conner and http://bmjopen.bmj.com/ 32 33 colleagues[36]. Thirty-four family members agreed to take part but one interview was not 34 fully completed and was excluded from analyses. Therefore, full interviews were completed 35 36 with 33 family members (44%). This response rate is similar to other psychological autopsy 37 38 studies[37 38]. The mean time since bereavement during the psychological autopsy 39 on September 30, 2021 by guest. Protected copyright. 40 interviews was 10.2 months (range: 6 – 21 months). 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 6 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 7 of 33 BMJ Open
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 Insert Figure 1 here 48 49 50 51 52 53 54 55 Figure 1: Flowchart of recruitment process for SSIS-ACE study 56 57 58 7 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 8 of 33
1 2 3 Measures 4 5 Qualitative study 6 7 8 Semi-structured interviews (n = 18) were conducted with the aid of a topic guide[33] 9 in order to explore the experiences of people bereaved by the suicide. Interviews began by 10 11 asking participants about the relationship they had with the deceased. The physical and 12 13 emotional impact of the bereavement on them was then explored. The impact of the 14 bereavement on the family and their social life was then explored. In addition, participants 15 16 were asked aboutFor what support peer services review they received and only what they feel suicide-bereaved 17 18 family members require in the immediate aftermath and the medium and long-term. 19 20 Participants’ permission to audio-record the interview was obtained. Thirteen interviews 21 took place in the participant’s home, two in university research offices and three at a 22 23 neutral location selected by participants. All interviews took place in a single session. Mean 24 25 length of interviews was 97.5 minutes (range 42-180 minutes). 26 27 Quantitative study 28 29 Family members’ wellbeing was assessed using the 21-item version of the Depression, 30 31 Anxiety, and Stress Scale (DASS-21) [39]. This scale assesses a participant’s wellbeing in the http://bmjopen.bmj.com/ 32 33 past week. The scale successfully differentiates between the three affective states while also 34 35 demonstrating consistency between clinical and non-clinical samples[39]. Median scores of 36 depression, anxiety and stress, together with dichotomised variables were presented. 37 38 Recommended cut-off scores to generate severity level ranges from normal, mild, 39 on September 30, 2021 by guest. Protected copyright. 40 moderate, severe and extremely severe categories[40]. However, due to small numbers in 41 42 the study, it was not possible to subdivide the sample by these five categories. Therefore, 43 participants who met the criteria for depression, anxiety and/or stress at the levels between 44 45 mild and extremely severe were collapsed into a category of above the “normal” cut-off and 46 47 those below these scores were classified as “normal”. Scores of ≥10 for depression, ≥8 for 48 anxiety and ≥15 for stress were considered indicative of the presence of depression, anxiety, 49 50 or stress respectively. These cut-off points have been used previously [39 41] and are 51 52 considered diagnostic indicators of potential diagnoses of depression, anxiety and/or stress 53 54 [40 42]. All statistical analyses were conducted using SPSS Version 22. 55 56 57 58 8 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 9 of 33 BMJ Open
1 2 3 Data analysis 4 5 Qualitative study 6 7 8 Qualitative data were analysed using thematic analysis, which is a flexible method that 9 allows for a variety of ontological and epistemological stances[43]. Thematic analysis 10 11 involves a number of steps, including familiarising oneself with the data, generating initial 12 13 codes, searching, reviewing and finally, defining themes[43]. Two authors (AS and KMS) 14 coded the data and all stages of coding and development of themes were discussed with the 15 16 research team. NVIVOFor 11 softwarepeer facilitated review the organisation only of the data. In the absence of 17 18 standardised guidelines to report mixed-methods research, the Consolidated Criteria for 19 20 Reporting Qualitative Research (COREQ) checklist was used and is available as 21 supplementary file 2. 22 23 24 Quantitative study 25 26 Descriptive statistics were used to present information on the age, gender and 27 28 marital status of the suicide decedents, the method of suicide, if a suicide note was present 29 and if there was a history of self-harm prior to the death. The age and gender of the family 30 31 members and their relationship to the deceased were also presented using descriptive http://bmjopen.bmj.com/ 32 33 statistics. The characteristics of those interviewed for the follow-up qualitative study was 34 35 compared with those who were not interviewed using Chi-Square and T-tests. Tests of 36 normality indicated the data was non-normal and therefore non-parametric tests were 37 38 utilised. Median scores and inter-quartile ranges were computed to describe the DASS-21 39 on September 30, 2021 by guest. Protected copyright. 40 sub-scales and total score. A Mann-Whitney U test was used to test for differences in 41 42 wellbeing for males and females and for people bereaved by a hanging or non-hanging 43 suicide. 44 45 46 RESULTS 47 48 Qualitative results 49 The 18 participants interviewed for the qualitative study did not significantly differ from 50 51 those not interviewed regarding their gender (p = .42), age (p = .56), relationship to the 52 53 deceased (p = .69), method of suicide (p = .69), their depression (p = .49), anxiety (p = .08), 54 55 stress (p = .59) and total score (p = .28) on the DASS-21 scale. Three main themes were 56 57 58 9 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 10 of 33
1 2 3 identified from the analysis process: ‘entanglement of grief and health reactions’, ‘disparity 4 5 in support after suicide’ and ‘reconstructing life after deceased’s suicide’. 6 7 Co-occurrence of grief and health reactions 8 9 This first superordinate theme has two subordinate themes; ‘immediate grief reactions’ and 10 11 ‘enduring physical, psychological and psychosomatic health difficulties’. It was apparent 12 13 throughout the interviews that physical, psychosomatic and psychological health 14 experiences were often tied in with grief reactions, including blame, guilt and extreme 15 16 sadness. Additionally,For reactions peer were influenced review by contextual only factors, such as whether the 17 18 participant found their family members body and were informed of the death by others. 19 20 Immediate grief reactions experienced by participants ranged from guilt, blame, shame, 21 22 sadness and relief. Participants often felt angry, both towards the deceased and also 23 24 healthcare professionals who cared for the deceased. Conversely, two participants were not 25 angry with their loved one for taking their own lives: one participant felt relieved their 26 27 family member was no longer suffering psychologically and “felt she had escaped, she got 28 29 out of it” and revealed it “alleviated some of the pressure” as “she was going to get worse 30 31 and worse”. Feelings of numbness were reported, with some participants not wanting to http://bmjopen.bmj.com/ 32 believe that their loved one was dead. One family member could not believe her sister was 33 34 dead until she was given the chance to view her body. The delay in receiving the news about 35 36 the death and viewing the body appears to have been especially difficult for her when 37 acknowledging the death: 38 39 on September 30, 2021 by guest. Protected copyright. 40 “I went on then for the night like nothing had happened being honest with you, it was just 41 42 numb and I didn’t want to believe it until I saw it for myself. That was the Wednesday and 43 we didn’t see her until the Friday” (sibling) 44 45 46 Physical reactions experienced at the immediate point of bereavement included nausea, 47 vomiting, breathlessness, numbness, memory loss, and an inability to stand as “my legs had 48 49 just given way”. One participant noted an immediate physical change to their health, as 50 51 their heart rate escalated upon hearing about the death, which resulted in a diagnosis of 52 hypertension the following day: 53 54 55 56 57 58 10 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 11 of 33 BMJ Open
1 2 3 “My heart rate went up straight away, through the roof. Actually, I had to see a doctor on 4 5 the next day [sic]…and I’m on blood pressure control pills since then and I will be probably 6 for the rest of my life” (sibling) 7 8 9 Other psychosomatic health reactions often noted by participants included physical pain, 10 severe abdominal pains, loss of appetite, low energy levels and inability to sleep in the 11 12 immediate aftermath of the suicide. Some participants attributed their low energy levels to 13 14 “the emotion” and “turmoil” associated with their grieving, while others felt it was due to 15 their disrupted sleeping patterns. Reported problems with sleeping in the immediate 16 For peer review only 17 aftermath varied in severity and duration. One participant described how they “couldn’t 18 19 sleep at all in the beginning” and another described how they attempted to tire themselves 20 21 during the day with walks in an attempt to sleep at night. A number of participants 22 described experiencing distressing nightmares and visions of the deceased: 23 24 25 “The son came in like and he was asking me what I was doing…[deceased] was talking to me, 26 27 I was talking to him, he was there like, do you know what I’m saying…I thought he 28 was, I was out of my bed and the whole lot” (parent). 29 30 31 Loss of appetite was reported by some participants as a psychosomatic reaction which often http://bmjopen.bmj.com/ 32 led to weight loss. Reasons for loss of appetite varied, including nausea due to flashbacks of 33 34 finding the body, feelings of depression and despondence following the death: 35 36 “Food-wise, I’m never hungry, I could stay without it all day…if I have a cup of tea and a bit 37 38 of bread in the morning, I’m grand…Since himself has gone, you’re just getting up in the 39 on September 30, 2021 by guest. Protected copyright. 40 morning doing the odd old thing, sure what’s the point in doing it like” (spouse). 41 42 Finding the decedent’s body appeared to induce more severe reactions in some cases which 43 44 often extended to longer-term psychological impacts, including depression, anxiety, panic 45 46 attacks, post-traumatic stress disorder, suicidal thoughts and suicide attempts. 47 48 “I was depressed afterwards and I…still have this fuzziness in my head…it’s very hard to 49 50 explain. It feels like I’m stressed, stressed, like even small little things I can’t deal with” 51 (spouse) 52 53 54 One participant noted that they were not distressed at finding the body but described the 55 scene as “calm”, while also providing her with the opportunity to say goodbye to the 56 57 58 11 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 12 of 33
1 2 3 deceased. It also allowed her to lay “down on the ground beside him and I put my head 4 5 down on his chest…he was still warm and everything…I just stayed there for a long…I 6 suppose it was my way of saying goodbye to him” (sibling). 7 8 9 The initial experiences of the majority of family members bereaved by suicide set the stage 10 for enduring physical, psychological and psychosomatic difficulties in the months following 11 12 the bereavement. Firstly, a number of adverse mental health outcomes were reported by 13 14 family members including being more concerned about their own mental health, 15 experiencing suicidal thoughts, suicide attempts, depression, anxiety, post-traumatic stress 16 For peer review only 17 disorder (PTSD), nightmares, memory loss and intrusive images of the deceased. One 18 19 participant attempted suicide in the months after the suicide but emphasised they did not 20 21 want to die but rather to escape the emotional pain and depression: 22 23 “The morning that it happened, I just woke up and the feeling was so awful just inside my 24 25 head, I thought like I just can’t stick this anymore, so that’s why I done it. It was just like to 26 get away from this awful feeling” (sibling) 27 28 29 Ongoing intrusive images of the deceased and how they died were also reported by a 30 31 number of participants. These images were not restricted to those who found the body but http://bmjopen.bmj.com/ 32 were also experienced by those who were informed of the death by others. One participant 33 34 was preoccupied with the violent and traumatic nature of the death which resulted in her 35 36 still being unable to sleep at night: 37 38 “I’d be awake all night…and then I’m wrecked during the day. In the dead of night in the 39 on September 30, 2021 by guest. Protected copyright. 40 dark I think about how she done it…that would make me ill” (parent) 41 42 Additionally, a number of participants reported psychosomatic symptoms including, chronic 43 44 feelings of low energy/exhaustion, persistent chest pains, breathlessness and physical pain 45 46 which endured in the months after deceased’s death. Their health status was often 47 influenced by their health behaviours. Some family members noted “everything stopped, 48 49 the world stopped that day” and tried but failed to resume their normal physical activity. 50 51 For others, negative health behaviours, including excessive alcohol consumption and over- 52 eating were used as a coping mechanism: 53 54 55 56 57 58 12 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 13 of 33 BMJ Open
1 2 3 “I’d drink I’d say [pauses] a bottle of vodka a day and a few pints as well… it’s [the alcohol 4 5 consumption] got a bit worse… I don’t know if it’s directly related to it or whether I’m using 6 it as an excuse” (parent) 7 8 9 Importantly, some family members experienced an improvement in health behaviours, 10 including, increasing their levels of physical activity which benefited fitness levels, healthy 11 12 weight loss and aided the grieving process: 13 14 “I went out to the dancing on a Wednesday night, I said make new friends you know…Ya I’ve 15 16 got fitter… ThatFor was a big peerboost for me toreview chat to people and only pass away the week” (spouse) 17 18 19 Participants experienced a number of adverse physical health problems in the months after 20 the deceased’s suicide, including being diagnosed with hypertension, type 1 diabetes and 21 22 diverticulitis. Participants attributed these diagnoses to the stress of the deaths: 23 24 “I was hospitalised again this week with it…the doctor came in and said “you need to stop, 25 26 you really need to stop, it’s not cancer but it’s going to affect you for the rest of your life…I 27 28 know that’s a consequence of dealing with [deceased’s death]” (child) 29 30 31 http://bmjopen.bmj.com/ 32 Disparity in supports after suicide 33 34 35 The second superordinate theme has two subordinate subthemes; ‘need for formal support’ 36 37 and ‘need for informal support’. Participants described requiring a range of supports, 38 however, these needs were often not fully addressed by the formal and informal support 39 on September 30, 2021 by guest. Protected copyright. 40 networks. This disparity in the needs and availability of support impacted on the 41 42 participant’s grieving process. Primarily, both formal and informal support were required to 43 address intense psychological, psychosomatic and physical symptoms brought about by 44 45 feelings of anger, guilt and blame: 46 47 “I went to a bereavement information evening one night before I started any counselling, 48 49 they put up on a screen physical symptoms and there was about 20 different things and I 50 51 could tick at least 10 of them, shortness of breath, panic attacks, headaches, chest pains, 52 53 physical chest pains…crippling abdominal pains…it’s the anger that manifests itself in 54 physical pain” (spouse) 55 56 57 58 13 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 14 of 33
1 2 3 Informal support, in the form of practical and emotional support from family and friends 4 5 was as important as formal support to some participants. One participant described how 6 “every night for so long my parents came over to stay every night”, while another credited 7 8 his wife as “the biggest support that I have received”. He went on to say that if he was “just 9 10 left to wallow in it”, that he “would have gone into a big black hole over it”. Another 11 participant emphasized the importance of both informal and formal support following a 12 13 suicide: 14 15 “The love of my family…“come home, we’ll mind you” and they did, that was incredible and 16 For peer review only 17 if some poor person doesn’t have that, I really pity them. It’s your family and your friends 18 19 that gets you through that, and the counselling” (spouse) 20 21 Others described how family and friends helped with funeral arrangements, financial 22 23 support, preparing or bringing food to the family member and helping with practical jobs 24 25 around the house, such as maintaining the house and garden in the weeks and months after 26 the death: 27 28 29 “My friends from down the town would come up every day with food and I would always 30 31 forgot they were going to do it [laughs] so they were coming up for about a month with http://bmjopen.bmj.com/ 32 food, they were so kind… I was embarrassed but I found it helpful” (spouse) 33 34 35 In some instances, fractured family relations impeded the family member receiving informal 36 support. In those instances, the importance of formal support is paramount: 37 38 39 “I have a sister but then we fell out over this, I don’t have any contact with them…My on September 30, 2021 by guest. Protected copyright. 40 problem is if I was feeling down, I wouldn’t say it to them… [I’d be] very wary of people 41 42 because I’ve said things and it’s gone around town…I know I can trust my counsellor or my 43 44 doctor or yourself there now” (spouse) 45 46 Another participant sought formal support as they “needed to speak to somebody outside 47 48 of my family because I was upsetting everybody when I wanted to talk”. Seeking formal 49 50 support was imperative “to get the counselling, just taking time to reflect on everything and 51 deal with it”. Two participants noted respectively that there was “no pressure with money” 52 53 from the counsellor and if they didn’t have “the money that day she’d say give it to me 54 55 when you have it”. A number of participants spoke about having to stop formal support due 56 57 58 14 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 15 of 33 BMJ Open
1 2 3 to financial reasons, with one participant stating that there “should be free counselling for 4 5 people bereaved by suicide”: 6 7 “I hadn’t any steady money coming in, my illness benefit had finished and stuff like that…So 8 9 that’s the reason I finished up with him [counsellor]” (spouse) 10 11 The understanding and flexibility of some bereavement counsellors following the suicide 12 13 were hugely valued by participants. However, not all experiences with formal support were 14 positive, with one person noting that the counsellors were “too shocked to deal with me”, 15 16 while another saidFor the counsellor peer “had review the clock ticking”. only Participants noted that nobody 17 18 proactively contacted them to offer formal support. This point is particularly salient as many 19 20 spoke of being unable to seek help themselves or were unsure of what help was required. 21 Feeling “so awful” and “you don’t even know what you need” were significant barriers to 22 23 seeking help while others had to “make the phone calls” and “run after all of them [the 24 25 counselling services]”. One participant spoke about how she didn’t approach her own GP for 26 27 help “but he never came with a list of things either to see how I was either, here’s a list of 28 services you can avail of”. She expected him to contact her and she explained “it’s very hard 29 30 yourself because you don’t even know what you need”. As a result, she was searching the 31 http://bmjopen.bmj.com/ 32 internet “to find anything” and spoke about how “things aren’t readily available I think in 33 this day and age even though mental health is a really important thing”. 34 35 36 Some participants wanted to attend a suicide bereavement support group as they felt 37 counsellors could not “possibly understand what’s going on in my head, like unless they’ve 38 39 been through it”. Others spoke of wanting to talk to others “with similar experiences” on September 30, 2021 by guest. Protected copyright. 40 41 because “I think it’s important for me to feel that I’m not the only one going through this”. 42 43 Additionally, one participant felt that she would benefit from it “because I do find I’m alone 44 in my thoughts of it and I’m interested in getting other peoples stories so I can relate [to it]”. 45 46 However, no such support groups were available for any of the participants. A small number 47 48 of participants reported that they did not require any formal support. One participant spoke 49 50 with their husband about whether they needed counselling and both concluded that they 51 can “hack this” on their own. Specifically, two participants who noted they did not require 52 53 formal support were engaging in over-eating and excessive alcohol consumption as coping 54 55 mechanisms. 56 57 58 15 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 16 of 33
1 2 3 Reconstructing life after deceased’s suicide 4 5 Each participant was confronted with trying to comprehend, make sense of, and reconstruct 6 7 aspects of their lives following their family member’s suicide. Participants were particularly 8 9 concerned with aspects of their wellbeing. Some spoke about finding it difficult to look 10 positively to the future. Some participants spoke about moving forward in terms of 11 12 relationships. One participant spoke about how “he [the deceased] was the person I was 13 14 supposed to spend the rest of my life with and looking to the future without him is…it’s hard 15 for me to do”. She explains how people often say to her “you’re young, you’re going to find 16 For peer review only 17 someone else…and have more kids”. However, she feels “that’s not for me now… I feel like I 18 19 had that experience with him, and I feel like I don’t want that with anyone else ever”. Some 20 21 participants spoke about seeking new relationships following their partner’s death. One 22 participant spoke about how her friends and her counsellor broached the topic of a new 23 24 relationship with her and she felt “why not…I have an awful lot of love to give”. Seeking new 25 26 relationships and friendships was an important aspect of moving forward for some 27 28 participants as “there was lots of times where I wouldn’t go out…but eventually I got it into 29 my head, I went out to the dancing on a Wednesday night, I said make new friends…and 30 31 then I met this new girl last year before Christmas”. http://bmjopen.bmj.com/ 32 33 In terms of wellbeing, a small minority of participants were unable to experience positive 34 35 thoughts following the suicide. One spoke about wondering “what’s the point in 36 37 living…that’s what’s killing me”. Another participant spoke about she no longer socialises 38 39 since her partner’s death and becomes depressed following constant rumination about his on September 30, 2021 by guest. Protected copyright. 40 death: 41 42 43 “I don’t socialise the way I used to before with other people…the tv might be on but I’d have 44 no interest, I’d be just thinking away to myself and get depressed about it then” (spouse) 45 46 47 Conversely, the majority of participants spoke about how while they had negative thoughts, 48 they were often able to balance these with more positive thoughts. One participant noted 49 50 that simple things like turning on the radio so there’s “something on in the house” or 51 52 watching a DVD with his children helps as he “enjoys it when we’re all together”. Various 53 54 other social activities and past-times such as walking and gardening were endorsed by some 55 as helping during the grieving process. One participant spoke about how she uses yoga as a 56 57 58 16 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 17 of 33 BMJ Open
1 2 3 means of “being present” and to tell herself that she’s “ok” even when “there are still 4 5 images in my head” after finding the deceased. A further participant stated they were “very 6 positive” and engaged in walking and “a bit of photography” which helped him in “hanging 7 8 together fairly well”. 9 10 Part of this reconstruction was also about reappraising what was important to them and 11 12 how they thought about life. Some participants chose to make big life changes after the 13 14 death, including moving homes, changing jobs or completely disengaging from the work 15 environment: 16 For peer review only 17 18 “I haven’t gone back to my old job in [big city], you know life has changed and I was working 19 20 long days and didn’t really have a life, now, I’m looking back and saying, there’s a little bit 21 more to life than that you know?” (spouse) 22 23 24 Two participants moved house soon after the death. One described that she “couldn’t stay 25 there” as the death occurred in the house. The other participant was forced to sell the 26 27 house to pay off the debts the deceased had accumulated but had hidden from his partner. 28 29 The participant felt a sense of rejection and betrayal that the deceased didn’t trust her 30 31 enough to speak to her about their spiralling debts. She would have “toughed it out and said http://bmjopen.bmj.com/ 32 to him ok what are we going to do about it” but she feels he was afraid to tell her as “I 33 34 suppose he thought I’d leave him”. Three participants were in the process of selling their 35 36 properties or had a strong desire to move at the time of the interview as one felt she could 37 not “move forward while I’m in this house presently” due to her experience of visions of the 38 39 deceased in the house. on September 30, 2021 by guest. Protected copyright. 40 41 42 Quantitative results 43 44 Characteristics of decedents and family members 45 46 Characteristics of the 33 suicide decedents and family members bereaved by suicide are 47 48 presented in Table 1. The majority of suicide decedents were male (72.7%), aged 40-59 49 50 years (42.4%), were single (42.4%) at the time of death, and died by hanging (57.6%). While, 51 just over half of the suicide-bereaved family members were female (54.5%) and aged 52 53 between 40-59 years (57.6%). The most commonly represented kinship was partner/spouse 54 55 (36.4%). The majority of suicide decedents were educated to secondary school level 56 57 58 17 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 18 of 33
1 2 3 (39.4%), followed by one quarter (27.3%) and one fifth (21.2%) were educated to post- 4 5 leaving certificate and third level, respectively. The majority of suicide decedents (42.4%) 6 were employed/self-employed prior to their death. Data for the other educational and 7 8 employment categories were not presented to maintain confidentiality. Hanging was the 9 10 most common method of suicide (57.6%), with over half of the sample having a history of 11 intentional self-harm prior to their suicide (54.5%). Just under a half of suicide decedents 12 13 (45.5%) left a suicide note. 14 15 16 For peer review only 17 18 19 20 21 Table 1: Characteristic of suicide decedents and suicide-bereaved family members (n = 33) 22 Suicide decedents N (%) Family members N (%) 23 Sex 24 25 Male 24 (72.7) 15 (45.5) 26 27 Female 9 (27.3) 18 (54.5) 28 29 Age 30 18-39 years 9 (27.3) 7 (21.2) 31 http://bmjopen.bmj.com/ 32 40-59 years 14 (42.2) 19 (57.6) 33 34 60+ years 10 (30.3) 7 (21.2) 35 Interviewee’s relationship to deceased 36 37 Partner/Spouse 12 (36.4) 38 39 Parent 7 (21.2) on September 30, 2021 by guest. Protected copyright. 40 41 Sibling 9 (27.3) 42 Child 5 (15.2) 43 44 Marital status 45 46 Single 14 (42.2) 47 48 Married/co-habiting 12 (36.4) 49 Widowed/divorced/separated 7 (21.2) 50 51 52 53 Wellbeing outcomes (DASS-21 scale) 54 Median scores on the DASS-21 were highest for stress (Mdn = 12.00, IQR = 11.00), followed 55 56 by depression (Mdn = 4.00, IQR = 8.00) and anxiety (Mdn = 2.00, IQR = 5.00). Nearly one- 57 58 18 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 19 of 33 BMJ Open
1 2 3 quarter of the sample (24.2%) had scores that indicated the presence of at least mild levels 4 5 of depression. One in four suicide-bereaved family members (27.3%) had scores that 6 indicated the presence of at least mild levels of stress. Just under a fifth of participants 7 8 (18.2%) had scores that indicated the presence of at least mild levels of anxiety (Table 2). 9 10 These outcomes refer to participants’ wellbeing in the week before the interview. 11 12 13 14
15 16 For peer review only 17 18 19 20 Table 2: Descriptive statistics of DASS-21 scale scores 1 21 Median (IQR) Range Above “normal” cut-off N (%) 22 Depression score 4.00 (8.00) 0-34 8 (24.2) 23 24 Anxiety score 2.00 (5.00) 0-24 6 (18.2) 25 Stress score 12.00 (11.00) 0-28 9 (27.3) 26 27 Total score 18.00 (26.00) 0-76 28 29 30
A Mann-Whitney U test revealed no significant difference in the levels of depression (p = http://bmjopen.bmj.com/ 31 32 .47), anxiety (p = .37) and stress (p = .81) between suicide-bereaved males and females 33 34 (Table 3). A Mann-Whitney U test also revealed no significant differences for levels of 35 36 depression (p = .43), anxiety (p = .45) and stress (p = .61) between those bereaved by 37 hanging and non-hanging suicides (Table 3). 38 39 on September 30, 2021 by guest. Protected copyright. 40 Table 3: DASS-21 median rank scores by gender and method of suicide 41 42 Males Females p Hanging Non-hanging2 p 43 44 N = 15 N = 18 N = 19 N = 14 45 Variable Median (IQR) 46 47 Depression score 4.00 (10.00) 4.00 (7.00) .47 4.00 (6.00) 4.00 (13.00) .43 48 Anxiety score 2.00 (2.00) 3.00 (14.00) .37 2.00 (6.00) 2.00 (6.00) .45 49 50 Stress score 12.00 (12.00) 11.00 (11.00) .81 10.00 (10.00) 13.00 (13.00) .61 51 52 Total score 18.00 (26.00) 18.00 (32.00) .93 18.00 (14.00) 19.00 (29.00) .74 53 54
55 1 Scores of ≥10 for depression, ≥8 for anxiety and ≥15 for stress 56 2 Includes every other method besides hanging 57 58 19 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 20 of 33
1 2 3 DISCUSSION 4 5 Principal findings 6 7 The qualitative and quantitative aspects of this study provides insight into the 8 unique grief processes and health impacts experienced by family members bereaved by 9 10 suicide. The qualitative study further addresses a significant gap in the literature by 11 12 exploring the physical, psychosomatic health experiences and health behaviours of suicide- 13 14 bereaved family members. Results from the quantitative component of this study indicate 15 that a sizeable minority of suicide-bereaved family members experienced elevated levels of 16 For peer review only 17 depression, anxiety, and stress. Other empirical studies have found similar rates of 18 19 depression and anxiety amongst suicide-bereaved people to the current study, with one 20 study finding that 18% of the sample were moderately to severely depressed, as measured 21 22 on the PHQ-9, while 21% reported anxiety symptoms on the GAD- 2[44]. Furthermore, the 23 24 prevalence of depression in family members bereaved by suicide was reported in previous 25 26 studies as 30.5%[11] and 23%[45]. Other studies of nonclinical samples of adults had lower 27 median scores on the DASS-21 scale when compared to the suicide-bereaved median scores 28 29 found in this study[46 47]. Therefore, this indicates that those bereaved by suicide may have 30 31 higher rates of depression, anxiety and stress compared to nonclinical adult samples. http://bmjopen.bmj.com/ 32 33 One possible explanation for the lower than expected prevalence of depression, 34 35 anxiety and/or stress in our sample may be selection bias. Those family members who chose 36 37 to take part in the study may have had lower levels of psychopathology or difficulties with 38 the grieving process than other bereaved family members, and therefore may have been 39 on September 30, 2021 by guest. Protected copyright. 40 more likely to take part in the study. One recent population-based study compared suicide- 41 42 bereaved parents with matched non-bereaved parents: 20.5% of suicide-bereaved parents 43 refused to take part or to complete the study on the grounds of distress or ill-health, 44 45 compared to just 7.6% of non-suicide bereaved parents[44]. This suggests that those who 46 47 agree to take part in suicide bereavement research may be in better health than those who 48 49 declined to participate. Consequently, the number of suicide-bereaved people experiencing 50 high levels of depression, anxiety, and/or stress in this study and other empirical research 51 52 may be an underestimate of the true figure. Findings from the qualitative interviews 53 54 indicate that the initial feelings experienced by family members bereaved by suicide include 55 56 disbelief, shock, blame, guilt and anger. These mirror findings from other qualitative studies 57 58 20 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 21 of 33 BMJ Open
1 2 3 [30]. Our qualitative and quantitative results indicate that suicide-bereaved family members 4 5 experience a number of adverse psychological problems including, depression, anxiety, 6 panic attacks, suicidal thoughts, intrusive images, nightmares and PTSD. In addition, a 7 8 number of participants also experienced adverse psychosomatic health experiences 9 10 including feelings of nausea, vomiting, chest pains, palpitations, physical pain, abdominal 11 pains, and breathlessness. In some cases, these symptoms continued in the months after 12 13 the death and were associated with diagnoses such as hypertension, diverticulitis and type 1 14 15 diabetes. Bolton and colleagues[11] took a quantitative approach and similarly found that 16 For peer review only 17 suicide-bereaved parents had significantly higher rates of cardiovascular disease, chronic 18 obstructive pulmonary disease, hypertension, diabetes, depression and anxiety disorders 19 20 compared accident-bereaved parents. Additionally, a recent systematic review noted that 21 22 there is tentative evidence to suggest that suicide-bereaved family members have an 23 24 increased risk for a number of adverse physical health outcomes compared to people 25 bereaved by other causes of death[11 16-18 48]. Therefore, this study corroborates these 26 27 previous findings that people bereaved by suicide can experience adverse physical and 28 29 psychological health outcomes. 30 31 The quantitative and particularly the qualitative component of this study illustrate http://bmjopen.bmj.com/ 32 33 the difficulties encountered by family members bereaved by suicide and consequently, the 34 support they require. Research compiled by Grad and colleagues[49] underlies the 35 36 importance of those bereaved by suicide having the opportunity to seek support from 37 38 outside the family. Some participants spoke of the desire to attend a suicide support group. 39 on September 30, 2021 by guest. Protected copyright. 40 However, there is little research on the effectiveness of these groups for those bereaved by 41 suicide[50]. It was also clear from the interviews that financial difficulties in the aftermath of 42 43 the suicide were unfortunately common and prevented many from accessing formal support 44 45 services. Participants spoke about having to halt their counselling sessions due to a lack of 46 47 money to pay for the service. Reasons for financial difficulties varied and included inheriting 48 debts accrued by the deceased prior to the death or having to give up or take a break from 49 50 work due to grieving difficulties. Another study found that duration of support was 51 52 important, with 27% of people believing they required professional help for at least 12 53 months following the death. Furthermore, 25% and 17.4% reported needing support for at 54 55 least two years, or for as long as required[26]. These points underlie the importance of not 56 57 58 21 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 22 of 33
1 2 3 only providing timely and effective support to people bereaved by suicide but also support 4 5 that does not preclude people due to their financial circumstances. 6 7 The findings from the semi-structured interviews corroborate the quantitative 8 9 results of family members’ wellbeing, as measured by the DASS-21 scale. The quantitative 10 scale found that nearly one quarter of family members had scores that indicated at least 11 12 mild levels of depression. Furthermore, 1 in four and nearly 1 in five had a least mild levels 13 14 of stress and anxiety, respectively. The qualitative interviews provided a greater insight into 15 these difficulties through participants’ descriptions of visions/nightmares, suicidal ideation, 16 For peer review only 17 suicide attempts and physician-diagnosed depression, anxiety and PTSD in the months 18 19 following the suicide. Additionally, this mixed-methods study identified a gap in the 20 21 literature relating to qualitative research specifically exploring the physical and 22 psychosomatic health experiences in family members bereaved by suicide. Going forward, 23 24 further quantitative research investigating the association between suicide bereavement 25 26 and objective measures of physical health is required. 27 28 The mixed-methods approach and the comprehensive recruitment process involved 29 30 is a key strength of this study. Consecutive suicide and open verdict cases were identified via 31 http://bmjopen.bmj.com/ 32 examining coroner’s records as part of a larger case-control study (SSIS-ACE). Basic 33 information about the case and next-of-kin information was collected. Family members 34 35 were initially contacted via letter and telephone to take part in a psychological autopsy 36 37 study. Data on family members’ wellbeing was collected at the end of the psychological 38 39 autopsy interview. This data was analysed and forms the quantitative component of this on September 30, 2021 by guest. Protected copyright. 40 mixed-methods study. Following their participation in the larger case-control study, those 41 42 who provided written consent for follow-up were contacted by the first author of this paper 43 44 to take part in an additional qualitative interview about their experiences following the 45 suicide. Recruitment of the family members via coroner’s records and the consecutive 46 47 nature of the suicide and open verdict cases reduces the likelihood of selection bias, which 48 49 is often a significant problem in research addressing vulnerable populations[51]. The 50 51 combination of quantitative and qualitative research provides a clear indication of the 52 challenges and health problems encountered by family members bereaved by suicide. 53 54 55 Strengths and limitations 56 57 58 22 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 23 of 33 BMJ Open
1 2 3 This is the first mixed-methods study to specifically examine and explore the physical and 4 5 psychological health implications of suicide bereavement from both a quantitative and a 6 qualitative perspective. The quantitative data for this study was derived from the larger 7 8 SSIS-ACE case-control study which included consecutive cases of suicide and open verdict 9 10 cases that met the Rosenberg criteria for the determination of suicide [34]. The validity of 11 this research can be considered good as this research covered both confirmed suicide 12 13 deaths and open verdicts deaths as these may in fact be hidden suicide cases[52-54]. 14 15 Furthermore, researchers have recommended that such cases meeting criteria for a 16 For peer review only 17 probable suicide should be included in future research studies[53]. While the numbers of 18 suicide-bereaved family members in the study is modest, the quantitative results are similar 19 20 to those obtained in larger studies, as previously stated[11 45]. The interviewer for the 21 22 qualitative component of the study (AS) did not conduct any of the interviews for the SSIS- 23 24 ACE study, which minimises the risk of interviewer bias in the mixed-methods study. This 25 study has two main limitations. Firstly, family members’ physical health experiences were 26 27 self-reported and therefore do not constitute an objective measure. An objective measure 28 29 of physical health would remove any potential for recall bias in participants’ responses. 30
However, the focus of the qualitative component of the study is to understand family http://bmjopen.bmj.com/ 31 32 member’s experience of their own health, rather than objective health status. Secondly, the 33 34 relatively small quantitative sample size did not allow for more sophisticated statistical 35 36 analyses, including controlling for potential confounding factors such as closeness to the 37 deceased, kinship and time since death which may have impacted on the results presented. 38 39 Further mixed-methods research examining an objective measure of physical health would on September 30, 2021 by guest. Protected copyright. 40 41 be a significant addition to the knowledge base. 42 43 Implications 44 45 Considering previous research in the area, this study adds to the existing knowledge-base in 46 47 a number of ways. While the mental health outcomes of suicide bereavement have been 48 49 well-researched, there has been a dearth of research specifically examining the physical and 50 51 psychosomatic health outcomes of suicide bereavement from an experiential perspective. 52 Several implications arise from this research for professionals seeking to support people 53 54 bereaved by suicide. First, equal attention needs to be given to the physical and emotional 55 56 sequelae following suicide bereavement by clinicians. This research suggests that one in 57 58 23 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 24 of 33
1 2 3 four people bereaved by suicide will suffer elevated levels of depression and stress and just 4 5 under one in five will have elevated levels of anxiety. Second, it was clear that, due to 6 mental and physical health difficulties, some people were not able to effectively identify or 7 8 seek support. This underlies the importance of health professionals, coroners and any other 9 10 professional to pro-actively facilitate support for those bereaved by suicide. This 11 professional support is especially important when strained or fractured familial relations 12 13 affect the quality of the bereaved person’s informal support network. 14 15
16 For peer review only 17 18 19 20 Author affiliations 21 22 1 School of Public Health, University College Cork, Cork, Ireland 23 24 2National Suicide Research Foundation, University College Cork, Cork, Ireland 25 26 3 27 Department of Emergency Medicine, University of Massachusetts Medical School, 28 29 Worcester, MA, USA 30
4 http://bmjopen.bmj.com/ 31 Department of Obstetrics and Gynaecology, University College Cork, Cork, Ireland 32 33 Acknowledgements 34 35 The authors would like to thank all of those who took the time to take part in the interviews. 36 37 The authors would also like to acknowledge Dr Christina Dillon for her guidance with respect 38 39 to the quantitative data analysis. on September 30, 2021 by guest. Protected copyright. 40 41 Author’s contribution 42 43 AS drafted the initial protocol document. AS, CL, EA and PC contributed to the design of the 44 study. KMS, CL, PC and EA contributed to planned analyses. KMS, CL, EA and PC contributed 45 46 to revising drafts. All authors contributed to the final manuscript. 47 48 49 Funding statement 50 This work was conducted as part of the SPHeRE Programme under Grant No. 51 52 SPHeRE/2013/1. I would also like to acknowledge the funding received from the Health 53 54 Research Board to conduct the original SSIS-ACE case-control study, Grant No. HRA-2013- 55 56 57 58 24 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 25 of 33 BMJ Open
1 2 3 PHR-438 and the National Office for Suicide Prevention for providing funding for the 4 5 supervision of this research. 6 7 Competing interests 8 9 None 10 11 Exclusive licence statement 12 13 The Corresponding Author has the right to grant on behalf of all authors and does grant on 14 behalf of all authors, a worldwide licence to the Publishers and its licensees in perpetuity, in 15 16 all forms, formatsFor and media peer (whether reviewknown now or created only in the future), to i) publish, 17 18 reproduce, distribute, display and store the Contribution, ii) translate the Contribution into 19 other languages, create adaptations, reprints, include within collections and create 20 21 summaries, extracts and/or, abstracts of the Contribution, iii) create any other derivative 22 23 work(s) based on the Contribution, iv) to exploit all subsidiary rights in the Contribution, v) 24 25 the inclusion of electronic links from the Contribution to third party material where-ever it 26 may be located; and, vi) licence any third party to do any or all of the above. 27 28 29 Ethical approval 30 31 Ethical approval has been granted from the Clinical Research Ethics Committee of University http://bmjopen.bmj.com/ 32 33 College Cork, reference number: ECM 4 (o) 19/01/2016.Ethical approval was also granted 34 from the Clinical Research Ethics Committee of University College Cork, for the SSIS-ACE 35 36 study, reference number: ECM 5(5) 01/04/2014. 37 38 39 Data sharing statement on September 30, 2021 by guest. Protected copyright. 40 41 The data recorded, transcribed and analysed is very sensitive in nature. Due to the relatively 42 43 small number of participants and the specific geographic location, it would not be 44 appropriate to consider data sharing due to the risk of people being potentially identified. 45 46 47 References 48 1. World Health Organisation. Preventing Suicide: A Global Imperative. Luxembourg, 2014:89. 49 2. Berman AL. Estimating the Population of Survivors of Suicide: Seeking an Evidence Base. Suicide 50 51 Life Threat. Behav. 2011;41(1):110-16 doi: 10.1111/j.1943-278X.2010.00009.x[published 52 Online First: Epub Date]|. 53 3. Andriessen K, Rahman B, Draper B, Dudley M, Mitchell PB. Prevalence of exposure to suicide: A 54 meta-analysis of population-based studies. J. Psychiatr. Res. 2017;88:113-20 doi: 55 http://dx.doi.org/10.1016/j.jpsychires.2017.01.017[published Online First: Epub Date]|. 56 57 58 25 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 26 of 33
1 2 3 4. Pitman A, Osborn D, King M, Erlangsen A. Effects of suicide bereavement on mental health and 4 suicide risk. The Lancet Psychiatry 2014;1(1):86-94 doi: 10.1016/s2215-0366(14)70224- 5 x[published Online First: Epub Date]|. 6 5. Rostila M, Saarela J, Kawachi I. Suicide following the death of a sibling: a nationwide follow-up 7 study from Sweden. BMJ Open 2013;3(4) doi: 10.1136/bmjopen-2013-002618[published 8 Online First: Epub Date]|. 9 6. Pitman AL, Osborn DPJ, Rantell K, King MB. Bereavement by suicide as a risk factor for suicide 10 attempt: a cross-sectional national UK-wide study of 3432 young bereaved adults. BMJ Open 11 2016;6(1) doi: 10.1136/bmjopen-2015-009948[published Online First: Epub Date]|. 12 7. Wilcox HC, Kuramoto SJ, Lichtenstein P, Långström N, Brent DA, Runeson B. Psychiatric morbidity, 13 violent crime, and suicide among children and adolescents exposed to parental death. J. Am. 14 Acad. Child Adolesc. Psychiatry 2010;49(5):514-23 15 8. Mittendorfer-Rutz E, Rasmussen F, Lange T. A life-course study on effects of parental markers of 16 morbidityFor and mortality peer on offspring's review suicide attempt. PLoSonly One 2012;7(12):e51585 doi: 17 18 10.1371/journal.pone.0051585[published Online First: Epub Date]|. 19 9. Mittendorfer-Rutz E, Rasmussen F, Wasserman D. Familial clustering of suicidal behaviour and 20 psychopathology in young suicide attempters. Soc. Psychiatry Psychiatr. Epidemiol. 21 2008;43(1):28-36 doi: 10.1007/s00127-007-0266-0[published Online First: Epub Date]|. 22 10. Brent D, Melhem N, Donohoe MB, Walker M. The incidence and course of depression in 23 bereaved youth 21 months after the loss of a parent to suicide, accident, or sudden natural 24 death. Am. J. Psychiatry 2009;166(7):786-94 doi: 10.1176/appi.ajp.2009.08081244[published 25 Online First: Epub Date]|. 26 11. Bolton JM, Au W, Leslie WD, et al. Parents bereaved by offspring suicide: a population-based 27 longitudinal case-control study. JAMA Psychiatry 2013;70(2):158-67 doi: 28 10.1001/jamapsychiatry.2013.275[published Online First: Epub Date]|. 29 12. Ellenbogen S, Gratton F. Do They Suffer More? Reflections on Research Comparing Suicide 30 Survivors to Other Survivors. Suicide Life Threat. Behav. 2001;31(1):83-90 doi: 31 10.1521/suli.31.1.83.21315[published Online First: Epub Date]|. http://bmjopen.bmj.com/ 32 13. Pitman AL, Osborn DP, Rantell K, King MB. The stigma perceived by people bereaved by suicide 33 and other sudden deaths: A cross-sectional UK study of 3432 bereaved adults. J. Psychosom. 34 Res. 2016;87:22-9 doi: 10.1016/j.jpsychores.2016.05.009[published Online First: Epub 35 Date]|. 36 14. Xu G, Li N. A comparison study on mental health status between suicide survivors and survivors 37 of accidental deaths in rural China. J. Psychiatr. Ment. Health Nurs. 2014;21(10):859-65 38 39 15. Erlangsen A, Runeson B, Bolton JM, et al. Association between spousal suicide and mental, on September 30, 2021 by guest. Protected copyright. 40 physical, and social health outcomes: A longitudinal and nationwide register-based study. 41 JAMA Psychiatry 2017 doi: 10.1001/jamapsychiatry.2017.0226[published Online First: Epub 42 Date]|. 43 16. Miyabayashi S, Yasuda J. Effects of loss from suicide, accidents, acute illness and chronic illness 44 on bereaved spouses and parents in Japan: Their general health, depressive mood, and grief 45 reaction. Psychiatry Clin. Neurosci. 2007;61(5):502-08 46 17. de Groot MH, de Keijser J, Neeleman J. Grief Shortly After Suicide And Natural Death: A 47 Comparative Study Among Spouses and First-Degree Relatives. Suicide Life Threat. Behav. 48 2006;36(4):418-31 doi: 10.1521/suli.2006.36.4.418[published Online First: Epub Date]|. 49 18. Séguin M, Lesage A, Kiely MC. Parental Bereavement After Suicide and Accident: A Comparative 50 Study. Suicide Life Threat. Behav. 1995;25(4):489-98 doi: 10.1111/j.1943- 51 278X.1995.tb00241.x[published Online First: Epub Date]|. 52 19. Pitman AL, Hunt IM, McDonnell SJ, Appleby L, Kapur N. Support for Relatives Bereaved by 53 Psychiatric Patient Suicide: National Confidential Inquiry Into Suicide and Homicide Findings. 54 Psychiatr. Serv. 2016:appi.ps.201600004 doi: 10.1176/appi.ps.201600004[published Online 55 First: Epub Date]|. 56 57 58 26 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 27 of 33 BMJ Open
1 2 3 20. Pitman AL, Rantell K, Moran P, et al. Support received after bereavement by suicide and other 4 sudden deaths: a cross-sectional UK study of 3432 young bereaved adults. BMJ Open 5 2017;7(5) doi: 10.1136/bmjopen-2016-014487[published Online First: Epub Date]|. 6 21. Pettersen R, Omerov P, Steineck G, et al. Suicide-Bereaved Siblings' Perception of Health 7 Services. Death Stud. 2015;39(6):323-31 9p doi: 10.1080/07481187.2014.946624[published 8 Online First: Epub Date]|. 9 22. McMenamy JM, Jordan JR, Mitchell AM. What do Suicide Survivors Tell Us They Need? Results of 10 a Pilot Study. Suicide Life Threat. Behav. 2008;38(4):375-89 doi: 11 10.1521/suli.2008.38.4.375[published Online First: Epub Date]|. 12 23. Dyregrov K. What do we know about needs for help after suicide in different parts of the world? 13 A phenomenological perspective. Crisis 2011;32(6):310-8 doi: 10.1027/0227- 14 5910/a000098[published Online First: Epub Date]|. 15 24. Dyregrov K. Assistance from local authorities versus survivors' needs for support after suicide 16 Death Stud.For 2002;26 (8):647-68peer doi: review10.1080/07481180290088356[published only Online First: 17 18 Epub Date]|. 19 25. Brown J, Evans-Lacko S, Aschan L, Henderson MJ, Hatch SL, Hotopf M. Seeking informal and 20 formal help for mental health problems in the community: a secondary analysis from a 21 psychiatric morbidity survey in South London. BMC Psychiatry 2014;14(1):275 doi: 22 10.1186/s12888-014-0275-y[published Online First: Epub Date]|. 23 26. Wilson A, Marshall A. The support needs and experiences of suicidally bereaved family and 24 friends. Death Stud. 2010;34(7):625-40 25 27. Sugrue JL, McGilloway S, Keegan O. The Experiences of Mothers Bereaved by Suicide: An 26 Exploratory Study. Death Stud. 2013;38(2):118-24 doi: 27 10.1080/07481187.2012.738765[published Online First: Epub Date]|. 28 28. McKinnon JM, Chonody J. Exploring the Formal Supports Used by People Bereaved Through 29 Suicide: A Qualitative Study. Social Work in Mental Health 2014;12(3):231-48 doi: 30 10.1080/15332985.2014.889637[published Online First: Epub Date]|. 31 29. Hjelmeland H, Knizek BL. Why we need qualitative research in suicidology. Suicide Life Threat. http://bmjopen.bmj.com/ 32 Behav. 2010;40(1):74-80 doi: 10.1521/suli.2010.40.1.74[published Online First: Epub Date]|. 33 30. Shields C, Kavanagh M, Russo K. A Qualitative Systematic Review of the Bereavement Process 34 Following Suicide. Omega: Journal of Death & Dying 2017;74(4):426-54 doi: 35 10.1177/0030222815612281[published Online First: Epub Date]|. 36 31. Rogers J, Apel S. Revitalizing suicidology: A call for mixed methods designs. Suicidology Online 37 2010;1:95-98 38 39 32. Creswell JW. A Concise Introduction to Mixed Methods Research. Los Angeles: SAGE Publications, on September 30, 2021 by guest. Protected copyright. 40 2015. 41 33. Spillane A, Larkin C, Corcoran P, Matvienko-Sikar K, Arensman E. What are the physical and 42 psychological health effects of suicide bereavement on family members? Protocol for an 43 observational and interview mixed-methods study in Ireland. BMJ Open 2017;7(3):e014707 44 doi: 10.1136/bmjopen-2016-014707[published Online First: Epub Date]|. 45 34. Rosenberg ML, Davidson LE, Smith JC, et al. Operational criteria for the determination of suicide. 46 J. Forensic Sci. 1988;33(6):1445-56 47 35. Isometsä ET. Psychological autopsy studies – a review. Eur. Psychiatry 2001;16(7):379-85 doi: 48 http://dx.doi.org/10.1016/S0924-9338(01)00594-6[published Online First: Epub Date]|. 49 36. Conner KR, Beautrais AL, Brent DA, Conwell Y, Phillips MR, Schneider B. The next generation of 50 psychological autopsy studies. Part I. Interview content. Suicide Life Threat. Behav. 51 2011;41(6):594-613 doi: 10.1111/j.1943-278X.2011.00057.x[published Online First: Epub 52 Date]|. 53 37. Freuchen A, Kjelsberg E, Grøholt B. Suicide or accident? A psychological autopsy study of suicide 54 in youths under the age of 16 compared to deaths labeled as accidents. Child and adolescent 55 56 57 58 27 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 28 of 33
1 2 3 psychiatry and mental health 2012;6:30-30 doi: 10.1186/1753-2000-6-30[published Online 4 First: Epub Date]|. 5 38. Wong PWC, Chan WSC, Chen EYH, Chan SSM, Law YW, Yip PSF. Suicide among adults aged 30– 6 49: A psychological autopsy study in Hong Kong. BMC Public Health 2008;8:147-47 doi: 7 10.1186/1471-2458-8-147[published Online First: Epub Date]|. 8 39. Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the 9 Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. 10 Behav. Res. Ther. 1995;33(3):335-43 11 40. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety & Stress Scales. 2nd Edition ed. 12 Sydney Psychology Foundation 1995. 13 41. Cheung T, Wong SY, Wong KY, et al. Depression, Anxiety and Symptoms of Stress among 14 Baccalaureate Nursing Students in Hong Kong: A Cross-Sectional Study. Int. J. Environ. Res. 15 Public Health 2016;13(8) doi: 10.3390/ijerph13080779[published Online First: Epub Date]|. 16 42. Parkitny L, McAuleyFor J. The peer Depression Anxiety review Stress Scale (DASS). only J. Physiother. 2010;56(3):204 17 18 doi: 10.1016/S1836-9553(10)70030-8[published Online First: Epub Date]|. 19 43. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 20 2006;3(2):77-101 doi: 10.1191/1478088706qp063oa[published Online First: Epub Date]|. 21 44. Omerov P, Steineck G, Dyregrov K, Runeson B, Nyberg U. The ethics of doing nothing. Suicide- 22 bereavement and research: ethical and methodological considerations. Psychol. Med. 23 2014;44(16):3409-20 24 45. Melhem NM, Walker M, Moritz G, Brent DA. Antecedents and sequelae of sudden parental death 25 in offspring and surviving caregivers. Arch. Pediatr. Adolesc. Med. 2008;162(5):403-10 doi: 26 10.1001/archpedi.162.5.403[published Online First: Epub Date]|. 27 46. Sinclair SJ, Siefert CJ, Slavin-Mulford JM, Stein MB, Renna M, Blais MA. Psychometric evaluation 28 and normative data for the depression, anxiety, and stress scales-21 (DASS-21) in a 29 nonclinical sample of U.S. adults. Eval. Health Prof. 2012;35(3):259-79 doi: 30 10.1177/0163278711424282[published Online First: Epub Date]|. 31 47. Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): http://bmjopen.bmj.com/ 32 Construct validity and normative data in a large non-clinical sample. Br. J. Clin. Psychol. 33 2005;44(2):227-39 doi: 10.1348/014466505X29657[published Online First: Epub Date]|. 34 48. Dyregrov K, Nordanger D, Dyregrov A. Predictors of psychosocial distress after suicide, SIDS and 35 accidents. Death Stud. 2003;27(2):143-65 doi: 10.1080/07481180302892[published Online 36 First: Epub Date]|. 37 49. Grad OT, Clark S, Dyregrov K, Andriessen K. What helps and what hinders the process of surviving 38 39 the suicide of somebody close? Crisis 2004;25(3):134-9 doi: 10.1027/0227- on September 30, 2021 by guest. Protected copyright. 40 5910.25.3.134[published Online First: Epub Date]|. 41 50. Andriessen K, Krysinska K. Essential questions on suicide bereavement and postvention. 42 International Journal of Environmental Research & Public Health [Electronic Resource] 43 2012;9(1):24-32 44 51. Maple M, Cerel J, Jordan JR, McKay K. Uncovering and Identifying the Missing Voices in Suicide 45 Bereavement. Suicidology Online 2014;5:1-12 46 52. Pritchard C, Hansen L. Examining undetermined and accidental deaths as source of 'under- 47 reported-suicide' by age and sex in twenty Western countries. Community Ment. Health J. 48 2015;51(3):365-76 doi: 10.1007/s10597-014-9810-z[published Online First: Epub Date]|. 49 53. Bakst SS, Braun T, Zucker I, Amitai Z, Shohat T. The accuracy of suicide statistics: are true suicide 50 deaths misclassified? Soc. Psychiatry Psychiatr. Epidemiol. 2016;51(1):115-23 doi: 51 10.1007/s00127-015-1119-x[published Online First: Epub Date]|. 52 54. Chang SS, Sterne JA, Lu TH, Gunnell D. 'Hidden' suicides amongst deaths certified as 53 undetermined intent, accident by pesticide poisoning and accident by suffocation in Taiwan. 54 Soc. Psychiatry Psychiatr. Epidemiol. 2010;45(2):143-52 doi: 10.1007/s00127-009-0049- 55 x[published Online First: Epub Date]|. 56 57 58 28 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 29 of 33 BMJ Open
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 29 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 30 of 33
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 Figure 1: Flowchart of recruitment process for SSIS-ACE study 46 47 232x339mm (300 x 300 DPI) 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 31 of 33 BMJ Open
1 2 3 Consolidated criteria for reporting qualitative studies (COREQ): 4 5 32-item checklist 6 7 Developed from: 8 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 9 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 10 2007. Volume 19, Number 6: pp. 349 – 357 11 12 YOU MUST PROVIDE A RESPONSE FOR ALL ITEMS. ENTER N/A IF NOT 13 APPLICABLE 14 15 No. Item Guide questions/description Reported on 16 For peer review only Page # 17 Domain 1: Research team 18 and reflexivity 19 Personal Characteristics 20 21 1. Inter viewer/facilitator Which author/s conducted the inter view or 6 (in protocol) 22 focus group? 23 2. Credentials What were the researcher’s credentials? 6 (in protocol) 24 E.g. PhD, MD 25 3. Occupation What was their occupation at the time of 6 (in protocol) 26 the study? 27 4. Gender Was the researcher male or female? 6 (in protocol) 28 5. Experience and training What experience or training did the 6 (in protocol) 29 researcher have? 30 Relationship with http://bmjopen.bmj.com/ 31 participants 32 6. Relationship established Was a relationship established prior to 3 (in protocol) 33 study commencement? 34 35 7. Participant knowledge of What did the participants know about the 4 (in protocol) 36 the interviewer researcher? e.g. personal goals, reasons 37 for doing the research 38 8. Interviewer What characteristics were reported about 6 (in protocol) 39 characteristics the inter viewer/facilitator? e.g. Bias, on September 30, 2021 by guest. Protected copyright. 40 assumptions, reasons and interests in the 41 research topic 42 Domain 2: study design 43 Theoretical framework 44 9. Methodological What methodological orientation was 3 (in protocol) 45 orientation and Theory stated to underpin the study? e.g. 46 grounded theory, discourse analysis, 47 ethnography, phenomenology, content 48 analysis 49 50 Participant selection 51 10. Sampling How were participants selected? e.g. 5-6 52 purposive, convenience, consecutive, 53 snowball 54 11. Method of approach How were participants approached? e.g. 5 55 face-to-face, telephone, mail, email 56 12. Sample size How many participants were in the study? 5-6, 9 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 32 of 33
1 2 3 13. Non-participation How many people refused to participate or 7 4 dropped out? Reasons? 5 Setting 6 7 14. Setting of data Where was the data collected? e.g. home, 8 8 collection clinic, workplace 9 15. Presence of non- Was anyone else present besides the 3 (in protocol) 10 participants participants and researchers? 11 16. Description of sample What are the important characteristics of 9 12 the sample? e.g. demographic data, date 13 Data collection 14 17. Interview guide Were questions, prompts, guides provided 5 (in protocol) 15 by the authors? Was it pilot tested? 16 18. Repeat interviewsFor peerWere repeat review inter views carried only out? If yes, 5 17 how many? 18 19. Audio/visual recording Did the research use audio or visual 5 19 recording to collect the data? 20 20. Field notes Were eld notes made during and/or after 4 21 fi 22 the inter view or focus group? 23 21. Duration What was the duration of the inter views or 8 24 focus group? 25 22. Data saturation Was data saturation discussed? 4 26 23. Transcripts returned Were transcripts returned to participants 6 (in protocol) 27 for comment and/or correction? 28 Domain 3: analysis and 29 findings 30 Data analysis http://bmjopen.bmj.com/ 31 24. Number of data coders How many data coders coded the data? 9 32 25. Description of the Did authors provide a description of the 9 33 coding tree coding tree? 34 35 26. Derivation of themes Were themes identified in advance or 5-6 (in protocol), 9 36 derived from the data? 37 27. Software What software, if applicable, was used to 9 38 manage the data? 39 28. Participant checking Did participants provide feedback on the 6 (in protocol) on September 30, 2021 by guest. Protected copyright. 40 findings? 41 Reporting 42 29. Quotations presented Were participant quotations presented to 10-18 43 illustrate the themes/findings? Was each 44 quotation identified? e.g. participant 45 number 46 30. Data and findings Was there consistency between the data 20-21 47 consistent 48 presented and the findings? 31. Clarity of major themes Were major themes clearly presented in 10-18 49 50 the findings? 51 32. Clarity of minor themes Is there a description of diverse cases or 10-18 52 discussion of minor themes? 53 54 Once you have completed this checklist, please save a copy and upload it as part 55 of your submission. When requested to do so as part of the upload process, 56 please select the file type: Checklist. You will NOT be able to proceed with 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 33 of 33 BMJ Open
1 2 3 submission unless the checklist has been uploaded. Please DO NOT include this 4 checklist as part of the main manuscript document. It must be uploaded as a 5 separate file. 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open
What are the physical and psychological health effects of suicide bereavement on family members? An observational and interview mixed-methods study in Ireland
ForJournal: peerBMJ Open review only Manuscript ID bmjopen-2017-019472.R2
Article Type: Research
Date Submitted by the Author: 05-Dec-2017
Complete List of Authors: Spillane, Ailbhe; University College Cork National University of Ireland, School of Public Health; National Suicide Research Foundation Matvienko-Sikar, Karen; University College Cork National University of Ireland, School of Public Health Larkin, Celine; University of Massachusetts Medical School Department of Medicine, Department of Emergency Medicine Corcoran, Paul; University College Cork, School of Public Health; National Suicide Research Foundation Arensman, Ella ; University College Cork National University of Ireland, School of Public Health; National Suicide Research Foundation http://bmjopen.bmj.com/ Primary Subject Mental health Heading:
Secondary Subject Heading: Public health, Qualitative research, Health services research
Keywords: Mixed-methods, Suicide bereavement, Family members, Morbidity, Health
on September 30, 2021 by guest. Protected copyright.
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1 2 3 What are the physical and psychological health effects of suicide bereavement on family 4 5 members? An observational and interview mixed-methods study in Ireland 6 7 8 9 Ailbhe Spillane1 2*, Karen Matvienko-Sikar1, Celine Larkin3, Paul Corcoran1, 2, Ella Arensman1,2 10 11 12 13 14 *Corresponding author: Ms Ailbhe Spillane ([email protected]; 00353 21 4205544) 15 16 For peer review only 17 th 18 1. School of Public Health, 4 Floor Western Gateway Building, Western Road, Cork, 19 Ireland 20
21 22 2. National Suicide Research Foundation, Room 4.28, Western Gateway Building, 23 Western Road, Cork, Ireland 24 25 26 27 3. Department of Emergency Medicine, University of Massachusetts Medical School, 28 Worcester, MA, USA 29 30 31 http://bmjopen.bmj.com/ 32 33 34 Keywords: mixed-methods, suicide bereavement, family members, morbidity, health 35 36 37 38 Word count: 6,929 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55
56 57 58 1 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 2 of 31
1 2 3 ABSTRACT 4 5 Objectives: Research focussing on the impact of suicide bereavement on family members’ 6 physical and psychological health is scarce. The aim of this study was to examine how family 7 8 members have been physically and psychologically affected following suicide bereavement. 9 10 A secondary objective of the study was to describe the needs of family members bereaved 11 12 by suicide. 13 14 Design: A mixed-methods study was conducted, using qualitative semi-structured interviews 15 16 and additional quantitativeFor peer self-report review measures of depression, only anxiety and stress (DASS- 17 21). 18 19 20 Setting: Consecutive suicide cases and next-of-kin were identified by examining coroner’s 21 records in Cork City and County, Ireland from October 2014 to May 2016. 22 23 24 Participants: Eighteen family members bereaved by suicide took part in a qualitative 25 interview. They were recruited from the Suicide Support and Information System: A Case- 26 27 Control Study (SSIS-ACE) where family members bereaved by suicide (n = 33) completed 28 29 structured measures of their wellbeing. 30 31 Results: Qualitative findings indicated three superordinate themes in relation to http://bmjopen.bmj.com/ 32 33 experiences following suicide bereavement: (1) Co-occurrence of grief and health reactions; 34 35 (2) disparity in supports after suicide; and (3) reconstructing life after deceased’s suicide. 36 Initial feelings of guilt, blame, shame and anger often manifested in enduring physical, 37 38 psychological and psychosomatic difficulties. Support needs were diverse and were often 39 on September 30, 2021 by guest. Protected copyright. 40 related to the availability or absence of informal support by family or friends. Quantitative 41 42 results indicated that the proportion of respondents above the DASS-21 cut-offs 43 respectively were 24% for depression, 18% for anxiety and 27% for stress. 44 45 46 Conclusions: Healthcare professionals’ awareness of the adverse physical and 47 psychosomatic health difficulties experienced by family members bereaved by suicide is 48 49 essential. Pro-actively facilitating support for this group could help to reduce the negative 50 51 health sequelae. The effects of suicide bereavement are wide-ranging, including high levels 52 53 of stress, depression, anxiety, and physical health difficulties. 54 55 56 57 58 2 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 3 of 31 BMJ Open
1 2 3 4 5 Strengths and limitations of the study 6 7 ñ This study addressed a specific knowledge gap by examining the physical and 8 9 psychological health effects of suicide bereavement on family members in Ireland 10 11 ñ The study covered consecutive cases of suicide, which increases the external validity 12 of the outcomes 13 14 ñ This study screened open verdict deaths with validated screening criteria to identify 15 16 probableFor suicides. peer Therefore, thisreview study benefits only from the inclusion of probable 17 suicide cases that would otherwise have not been included in the study 18 19 ñ Physical health issues were self-reported and were not objectively measured 20 21 22 INTRODUCTION 23 24 Suicide is a significant global concern, with approximately 800,000 people taking their own 25 lives every year[1]. For every death by suicide, an estimated 60 people are directly and 26 27 intimately affected[2]. Recent research also indicates that 1 in 20 people have been exposed 28 29 to suicide in the past year, and 1 in 5 people have been exposed to suicide during their 30
lifetime[3]. Suicide bereavement is associated with a host of adverse mental health http://bmjopen.bmj.com/ 31 32 outcomes of suicide bereavement, including heightened risk of suicide[4-6], attempted 33 34 suicide[6-9], depression[10 11], psychiatric morbidity[7] and psychiatric admission[11]. 35 36 There is also emerging evidence from quantitative studies that family members bereaved by 37 suicide experienced more physical health issues than those bereaved by other means[12]. 38 39 on September 30, 2021 by guest. Protected copyright. 40 Individuals bereaved by suicide had poorer general health[13 14], reported more 41 pain[14], reported more physical illnesses[15] and disorders including cardiovascular 42 43 disease, chronic obstructive pulmonary disease, hypertension and diabetes[11]. In addition, 44 45 suicide-bereaved family members visited a GP more often[15] and had significantly higher 46 47 rates of outpatient physician visits for physical illnesses[11] than non-suicide bereaved 48 individuals. Negative health outcomes provide an impetus for timely access to effective 49 50 health services and psychosocial supports for those bereaved by suicide, many of whom 51 52 may carry existing health adversities prior to the death[11]. 53 54 Previous research has underlined the broader importance of access to support for 55 56 those bereaved by suicide [16 17]. In the aftermath of suicide, feelings of depression, 57 58 3 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 4 of 31
1 2 3 anxiety, guilt, extreme sadness, anger and nightmares are often present and are associated 4 5 with help-seeking in people bereaved by suicide[18 19]. These acute effects can be long- 6 lasting: the time point rated as the worst stage after a death is the first week for about one- 7 8 quarter of suicide-bereaved individuals but many family members struggle with the loss for 9 10 the first year and, in one-fifth of cases, up to and beyond three years[17]. Both formal 11 professional support and informal support from friends, families and others are important 12 13 during this time, and address different needs[20-22], and may be especially important for 14 15 first-degree relatives[23]. Despite their acute needs, those bereaved by suicide are less likely 16 For peer review only 17 than other bereaved individuals to receive informal support and immediate support 18 following the death, and are more likely to experience a delay in receiving support [17]. 19 20 21 Although a significant number of quantitative studies have examined the associations 22 among suicide bereavement, physical health outcomes and access to support, these areas 23 24 have rarely been examined from an experiential perspective using qualitative research in a 25 26 general sample[24 25]. Researchers are beginning to identify the need for further qualitative 27 28 research on suicide bereavement [26], to take into account the inherent complexity of 29 grieving and social processes[27]. Qualitative research can help to elucidate the lived 30 31 experience of suicide bereavement, highlighting such areas as feelings experienced by those http://bmjopen.bmj.com/ 32 33 bereaved by suicide, the meaning-making process following bereavement, and social 34 context[28]. 35 36 37 The primary aim of this research is to examine how people have been physically and 38 39 psychologically affected by a family member’s suicide. A secondary objective of the study is on September 30, 2021 by guest. Protected copyright. 40 to describe the support needs required by family members bereaved by suicide. The current 41 42 mixed-methods approach benefits from leveraging the advantages of both quantitative and 43 44 qualitative methodological approaches[29], while being able to provide a more 45 comprehensive and in-depth consideration of the research problem under investigation[30]. 46 47 48 METHODS 49 50 Study design and setting 51 52 This study applied a mixed-methods approach. The qualitative study was linked to a larger 53 54 case-control study, the Suicide Support and Information System: A Case-Control Study (SSIS- 55 56 ACE, January 2014-March 2017). Qualitative interviews were supplemented with 57 58 4 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 5 of 31 BMJ Open
1 2 3 quantitative data of suicide-bereaved family members’ wellbeing, which was collected as 4 5 part of the larger case-control study. Further information on the study design has been 6 reported elsewhere[31] and is available as supplementary file 1. 7 8 9 Sample and recruitment 10 11 Qualitative study 12 13 A subset of the 33 participants over the age of eighteen who took part in the SSIS-ACE study 14 15 and who consented for further follow-up were approached to take part in the qualitative 16 study. At the timeFor of the peerqualitative study review recruitment, thereonly were 29 participants in the 17 18 larger study to sample from. Three of these did not provide written consent for further 19 20 follow-up and one only wanted to be contacted again by the researcher that conducted the 21 initial psychological autopsy interview. Therefore, 25 individuals were initially contacted via 22 23 a letter. Nineteen participants agreed to the interview but one participant did not consent 24 25 for the interview to be audio-recorded and was therefore excluded from the qualitative 26 27 analysis. Therefore, eighteen interviews were conducted (female = 11; male = 7), which 28 yielded a response rate of 75%. In one instance, two family members were interviewed 29 30 together at their request. No repeat interviews were conducted. Interviewees were a 31 http://bmjopen.bmj.com/ 32 spouse (n = 7), a parent (n = 5), a sibling (n = 2) and a child (n = 4). Full details of the 33 34 recruitment process are illustrated in figure 1. Mean time since bereavement during the 35 qualitative interviews was 27.6 months (range: 15- 38 months). Half of all family members 36 37 interviewed (n = 9) found the deceased’s body, while the other half (n = 9) were informed of 38 39 the death by other family members or a member of the police force. on September 30, 2021 by guest. Protected copyright. 40 41 42 43 Quantitative study 44 45 46 The quantitative data outlined in this paper was collected as part of a larger case- 47 control study (SSIS-ACE). In SSIS-ACE, a senior researcher reviewed records of consecutive 48 49 suicides and open verdict files from inquests held by all coroners in Cork, Ireland over a 19- 50 51 month period. Open verdict files that met the Rosenberg criteria[32] for the determination 52 53 of suicide[32] were eligible for inclusion in the study as probable suicides[31]. Relatives 54 were eligible to participate in an interview for the case-control study if they were well- 55 56 acquainted enough with the deceased to provide detailed information with respect to the 57 58 5 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 6 of 31
1 2 3 deceased’s life and were over the age of 14 years. Family members were contacted by letter 4 5 and then by telephone and invited to participate in the psychological autopsy interview. 6 ‘Psychological autopsy’ is a specific research method which involves retrospectively 7 8 collecting information on aspects of a suicide decedents life, including socio-demographics, 9 10 previous self-harm, mental health, physical health, personality traits and treatment 11 provided by health care professionals before the suicide[33]. This information is primarily 12 13 gathered via structured interviews with family or friends of the deceased and also 14 15 information obtained by health professionals who treated the deceased[33]. The study took 16 For peer review only 17 into account elements of the psychological autopsy approach according to Conner and 18 colleagues[34]. Thirty-four family members agreed to take part but one interview was not 19 20 fully completed and was excluded from analyses. Therefore, full interviews were completed 21 22 with 33 family members (44%). This response rate is similar to other psychological autopsy 23 24 studies[35 36]. The mean time since bereavement during the psychological autopsy 25 interviews was 10.2 months (range: 6 – 21 months). 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 on September 30, 2021 by guest. Protected copyright. 39 40 41 42 43 44 45 46 47 48 49 Insert Figure 1 here 50 51 52 53 54 55 56 Figure 1: Flowchart of recruitment process for SSIS-ACE study 57 58 6 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 7 of 31 BMJ Open
1 2 3 Measures 4 5 Qualitative study 6 7 8 Semi-structured interviews (n = 18) were conducted with the aid of a topic guide[31] 9 in order to explore the experiences of people bereaved by the suicide. Interviews began by 10 11 asking participants about the relationship they had with the deceased. The physical and 12 13 emotional impact of the bereavement on them was then explored. The impact of the 14 bereavement on the family and their social life was then explored. In addition, participants 15 16 were asked aboutFor what support peer services review they received and only what they feel suicide-bereaved 17 18 family members require in the immediate aftermath and the medium and long-term. 19 20 Participants’ permission to audio-record the interview was obtained. Thirteen interviews 21 took place in the participant’s home, two in university research offices and three at a 22 23 neutral location selected by participants. All interviews took place in a single session. Mean 24 25 length of interviews was 97.5 minutes (range 42-180 minutes). 26 27 Quantitative study 28 29 Family members’ wellbeing was assessed using the 21-item version of the Depression, 30 31 Anxiety, and Stress Scale (DASS-21) [37]. This scale assesses a participant’s wellbeing in the http://bmjopen.bmj.com/ 32 33 past week. The scale successfully differentiates between the three affective states while also 34 35 demonstrating consistency between clinical and non-clinical samples[37]. Median scores of 36 depression, anxiety and stress, together with dichotomised variables were presented. 37 38 Recommended cut-off scores to generate severity level ranges from normal, mild, 39 on September 30, 2021 by guest. Protected copyright. 40 moderate, severe and extremely severe categories[38]. However, due to small numbers in 41 42 the study, it was not possible to subdivide the sample by these five categories. Therefore, 43 participants who met the criteria for depression, anxiety and/or stress at the levels between 44 45 mild and extremely severe were collapsed into a category of above the “normal” cut-off and 46 47 those below these scores were classified as “normal”. Scores of ≥10 for depression, ≥8 for 48 anxiety and ≥15 for stress were considered indicative of the presence of depression, anxiety, 49 50 or stress respectively. These cut-off points have been used previously [37 39] and are 51 52 considered diagnostic indicators of potential diagnoses of depression, anxiety and/or stress 53 54 [38 40]. All statistical analyses were conducted using SPSS Version 22. 55 56 57 58 7 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 8 of 31
1 2 3 Data analysis 4 5 Qualitative study 6 7 8 Qualitative data were analysed using thematic analysis, which is a flexible method that 9 allows for a variety of ontological and epistemological stances[41]. Thematic analysis 10 11 involves a number of steps, including familiarising oneself with the data, generating initial 12 13 codes, searching, reviewing and finally, defining themes[41]. Two authors (AS and KMS) 14 coded the data and all stages of coding and development of themes were discussed with the 15 16 research team. NVIVOFor 11 softwarepeer facilitated review the organisation only of the data. In the absence of 17 18 standardised guidelines to report mixed-methods research, the Consolidated Criteria for 19 20 Reporting Qualitative Research (COREQ) checklist was used and is available as 21 supplementary file 2. 22 23 24 Quantitative study 25 26 Descriptive statistics were used to present information on the age, gender and 27 28 marital status of the suicide decedents, the method of suicide, if a suicide note was present 29 and if there was a history of self-harm prior to the death. The age and gender of the family 30 31 members and their relationship to the deceased were also presented using descriptive http://bmjopen.bmj.com/ 32 33 statistics. The characteristics of those interviewed for the follow-up qualitative study was 34 35 compared with those who were not interviewed using Chi-Square and T-tests. Tests of 36 normality indicated the data was non-normal and therefore non-parametric tests were 37 38 utilised. Median scores and inter-quartile ranges were computed to describe the DASS-21 39 on September 30, 2021 by guest. Protected copyright. 40 sub-scales and total score. A Mann-Whitney U test was used to test for differences in 41 42 wellbeing for males and females and for people bereaved by a hanging or non-hanging 43 suicide. 44 45 46 RESULTS 47 48 Qualitative results 49 The 18 participants interviewed for the qualitative study did not significantly differ from 50 51 those not interviewed regarding their gender (p = .42), age (p = .56), relationship to the 52 53 deceased (p = .69), method of suicide (p = .69), their depression (p = .49), anxiety (p = .08), 54 55 stress (p = .59) and total score (p = .28) on the DASS-21 scale. Three main themes were 56 57 58 8 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 9 of 31 BMJ Open
1 2 3 identified from the analysis process: ‘Co-occurrence of grief and health reactions’, ‘disparity 4 5 in supports after suicide’ and ‘reconstructing life after deceased’s suicide’. 6 7 Co-occurrence of grief and health reactions 8 9 This first superordinate theme has two subordinate themes; ‘immediate grief reactions’ and 10 11 ‘enduring physical, psychological and psychosomatic health difficulties’. It was apparent 12 13 throughout the interviews that physical, psychosomatic and psychological health 14 experiences were often tied in with grief reactions, including blame, guilt and extreme 15 16 sadness. Additionally,For reactions peer were influenced review by contextual only factors, such as whether the 17 18 participant found their family members body or whether they were informed of the death 19 20 by others. 21 22 Immediate grief reactions experienced by participants ranged from guilt, blame, shame, 23 24 sadness and relief. Participants often felt angry, both towards the deceased and also 25 healthcare professionals who cared for the deceased. Conversely, two participants were not 26 27 angry with their loved one for taking their own lives: one participant felt relieved their 28 29 family member was no longer suffering psychologically and “felt she had escaped, she got 30 31 out of it” and revealed it “alleviated some of the pressure” as “she was going to get worse http://bmjopen.bmj.com/ 32 and worse”. Feelings of numbness were reported, with some participants not wanting to 33 34 believe that their loved one was dead. One family member could not believe her sister was 35 36 dead until she was given the chance to view her body. The delay in receiving the news about 37 the death and viewing the body appears to have been especially difficult for her when 38 39 acknowledging the death: on September 30, 2021 by guest. Protected copyright. 40 41 42 “I went on then for the night like nothing had happened being honest with you, it was just 43 numb and I didn’t want to believe it until I saw it for myself. That was the Wednesday and 44 45 we didn’t see her until the Friday” (sibling) 46 47 Physical reactions experienced at the immediate point of bereavement included nausea, 48 49 vomiting, breathlessness, numbness, memory loss, and an inability to stand as “my legs had 50 51 just given way”. One participant noted an immediate physical change to their health, as 52 their heart rate escalated upon hearing about the death, which resulted in a diagnosis of 53 54 hypertension the following day: 55 56 57 58 9 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 10 of 31
1 2 3 “My heart rate went up straight away, through the roof. Actually, I had to see a doctor on 4 5 [sic] the next day …and I’m on blood pressure control pills since then and I will be probably 6 for the rest of my life” (sibling) 7 8 9 Other psychosomatic health reactions often noted by participants included physical pain, 10 severe abdominal pains, loss of appetite, low energy levels and an inability to sleep in the 11 12 immediate aftermath of the suicide. Some participants attributed their low energy levels to 13 14 “the emotion” and “turmoil” associated with their grieving, while others felt it was due to 15 their disrupted sleeping patterns. Reported problems with sleeping in the immediate 16 For peer review only 17 aftermath varied in severity and duration. One participant described how they “couldn’t 18 19 sleep at all in the beginning” and another described how they tried to tire themselves during 20 21 the day with walks in an attempt to sleep at night. A number of participants described 22 experiencing distressing nightmares and visions of the deceased: 23 24 25 “The son came in like and he was asking me what I was doing…[deceased] was talking to me, 26 27 I was talking to him, he was there like, do you know what I’m saying…I thought he 28 was, I was out of my bed and the whole lot” (parent). 29 30 31 Loss of appetite was reported by some participants as a psychosomatic reaction which often http://bmjopen.bmj.com/ 32 led to weight loss. Reasons for loss of appetite varied, including nausea due to flashbacks of 33 34 finding the body or feelings of depression and despondence following the death: 35 36 “Food-wise, I’m never hungry, I could stay without it all day…if I have a cup of tea and a bit 37 38 of bread in the morning, I’m grand…Since himself has gone, you’re just getting up in the 39 on September 30, 2021 by guest. Protected copyright. 40 morning doing the odd old thing, sure what’s the point in doing it like” (spouse). 41 42 Finding the decedent’s body appeared to induce more severe reactions in some cases which 43 44 often extended to longer-term psychological impacts, including depression, anxiety, panic 45 46 attacks, post-traumatic stress disorder, suicidal thoughts and suicide attempts. 47 48 “I was depressed afterwards and I…still have this fuzziness in my head…it’s very hard to 49 50 explain. It feels like I’m stressed, stressed, like even small little things I can’t deal with” 51 (spouse) 52 53 54 One participant noted that they were not distressed at finding the body but described the 55 scene as “calm”, while also providing her with the opportunity to say goodbye to the 56 57 58 10 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 11 of 31 BMJ Open
1 2 3 deceased. It also allowed her to lay “down on the ground beside him and I put my head 4 5 down on his chest…he was still warm and everything…I just stayed there for a long…I 6 suppose it was my way of saying goodbye to him” (sibling). 7 8 9 The initial experiences of the majority of family members bereaved by suicide set the stage 10 for enduring physical, psychological and psychosomatic difficulties in the months following 11 12 the bereavement. Firstly, a number of adverse mental health outcomes were reported by 13 14 family members including being more concerned about their own mental health, 15 experiencing suicidal thoughts, suicide attempts, depression, anxiety and physician- 16 For peer review only 17 diagnosed post-traumatic stress disorder (PTSD) in the months after the death. Nightmares, 18 19 memory loss and intrusive images of the deceased were often present. One participant 20 21 attempted suicide in the months after the suicide but emphasised they did not want to die 22 but rather to escape the emotional pain and depression: 23 24 25 “The morning that it happened, I just woke up and the feeling was so awful just inside my 26 27 head, I thought like I just can’t stick this anymore, so that’s why I done [sic] it. It was just like 28 to get away from this awful feeling” (sibling) 29 30 31 Ongoing intrusive images of the deceased and how they died were also reported by a http://bmjopen.bmj.com/ 32 number of participants. These images were not restricted to those who found the body but 33 34 were also experienced by those who were informed of the death by others. One participant 35 36 was preoccupied with the violent and traumatic nature of the death which resulted in her 37 still being unable to sleep at night: 38 39 on September 30, 2021 by guest. Protected copyright. 40 “I’d be awake all night…and then I’m wrecked during the day. In the dead of night in the 41 42 dark I think about how she done [sic] it…that would make me ill” (parent) 43 44 Additionally, a number of participants reported psychosomatic symptoms including, chronic 45 46 feelings of low energy/exhaustion, persistent chest pains, breathlessness and physical pain 47 which endured in the months after deceased’s death. Their health status was often 48 49 influenced by their health behaviours. Some family members noted “everything stopped, 50 51 the world stopped that day” and tried but failed to resume their normal physical activity. 52 For others, negative health behaviours, including excessive alcohol consumption and over- 53 54 eating were used as a coping mechanism: 55 56 57 58 11 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 12 of 31
1 2 3 “I’d drink I’d say [pauses] a bottle of vodka a day and a few pints as well… it’s [the alcohol 4 5 consumption] got a bit worse… I don’t know if it’s directly related to it or whether I’m using 6 it as an excuse” (parent) 7 8 9 Importantly, some family members experienced an improvement in health behaviours, 10 including, increasing their levels of physical activity which benefited fitness levels, healthy 11 12 weight loss and aided the grieving process: 13 14 “I went out to the dancing on a Wednesday night, I said make new friends you know…ya I’ve 15 16 got fitter… ThatFor was a big peerboost for me toreview chat to people and only pass away the week” (spouse) 17 18 19 Participants experienced a number of adverse physical health problems in the months after 20 the deceased’s suicide, including being diagnosed with hypertension, type 1 diabetes and 21 22 diverticulitis. Participants attributed these diagnoses to the stress of the deaths: 23 24 “I was hospitalised again this week with it…the doctor came in and said “you need to stop, 25 26 you really need to stop, it’s not cancer but it’s going to affect you for the rest of your life…I 27 28 know that’s a consequence of dealing with [deceased’s death]” (child) 29 30 Disparity in supports after suicide 31 http://bmjopen.bmj.com/ 32 The second superordinate theme has two subordinate subthemes; ‘need for formal support’ 33 34 and ‘need for informal support’. Participants described requiring a range of supports, 35 36 however, these needs were often not fully addressed by the formal and informal support 37 38 networks. This disparity in the needs and availability of support impacted on the on September 30, 2021 by guest. Protected copyright. 39 participant’s grieving process. Primarily, both formal and informal support were required to 40 41 address intense psychological, psychosomatic and physical symptoms brought about by 42 43 feelings of anger, guilt and blame: 44 45 “I went to a bereavement information evening one night before I started any counselling, 46 47 they put up on a screen physical symptoms and there was about 20 different things and I 48 49 could tick at least 10 of them, shortness of breath, panic attacks, headaches, chest pains, 50 physical chest pains…crippling abdominal pains…it’s the anger that manifests itself in 51 52 physical pain” (spouse) 53 54 Informal support, in the form of practical and emotional support from family and friends 55 56 was as important as formal support to some participants. One participant described how 57 58 12 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 13 of 31 BMJ Open
1 2 3 “every night for so long my parents came over to stay every night”, while another credited 4 5 his wife as “the biggest support that I have received”. He went on to say that if he was “just 6 left to wallow in it”, that he “would have gone into a big black hole over it”. Another 7 8 participant emphasised the importance of both informal and formal support following a 9 10 suicide: 11 12 “The love of my family…“come home, we’ll mind you” and they did, that was incredible and 13 14 if some poor person doesn’t have that, I really pity them. It’s your family and your friends 15 that gets you through that, and the counselling” (spouse) 16 For peer review only 17 18 Others described how family and friends helped with funeral arrangements, financial 19 20 support, preparing or bringing food to the family member and helping with practical jobs 21 around the house, such as maintaining the house and garden in the weeks and months after 22 23 the death: 24 25 “My friends from down the town would come up every day with food and I would always 26 27 forgot they were going to do it [laughs] so they were coming up for about a month with 28 29 food, they were so kind… I was embarrassed but I found it helpful” (spouse) 30 31 In some instances, fractured family relations impeded the family member receiving informal http://bmjopen.bmj.com/ 32 33 support. In those instances, the importance of formal support is paramount: 34 35 “I have a sister but then we fell out over this, I don’t have any contact with them…My 36 37 problem is if I was feeling down, I wouldn’t say it to them… [I’d be] very wary of people 38 39 because I’ve said things and it’s gone around town…I know I can trust my counsellor or my on September 30, 2021 by guest. Protected copyright. 40 doctor or yourself there now” (spouse) 41 42 43 Another participant sought formal support as they “needed to speak to somebody outside 44 45 of my family because I was upsetting everybody when I wanted to talk”. Seeking formal 46 support was imperative “to get the counselling, just taking time to reflect on everything and 47 48 deal with it”. Two participants noted respectively that there was “no pressure with money” 49 50 from the counsellor and if they didn’t have “the money that day she’d say give it to me 51 when you have it”. A number of participants spoke about having to stop formal support due 52 53 to financial reasons, with one participant stating that there “should be free counselling for 54 55 people bereaved by suicide”: 56 57 58 13 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 14 of 31
1 2 3 “I hadn’t any steady money coming in, my illness benefit had finished and stuff like that…So 4 5 that’s the reason I finished up with him [counsellor]” (spouse) 6 7 The understanding and flexibility of some bereavement counsellors following the suicide 8 9 were hugely valued by participants. However, not all experiences with formal support were 10 positive, with one person noting that the counsellors were “too shocked to deal with me”, 11 12 while another said the counsellor “had the clock ticking”. Participants noted that nobody 13 14 proactively contacted them to offer formal support. This point is particularly salient as many 15 spoke of being unable to seek help themselves or were unsure of what help was required. 16 For peer review only 17 Feeling “so awful” and “you don’t even know what you need” were significant barriers to 18 19 seeking help while others had to “make the phone calls” and “run after all of them [the 20 21 counselling services]”. One participant spoke about how she didn’t approach her own GP for 22 help “but he never came with a list of things either to see how I was either, here’s a list of 23 24 services you can avail of”. She expected him to contact her and she explained “it’s very hard 25 26 yourself because you don’t even know what you need”. As a result, she was searching the 27 28 internet “to find anything” and spoke about how “things aren’t readily available I think in 29 this day and age even though mental health is a really important thing”. 30 31 http://bmjopen.bmj.com/ 32 Some participants wanted to attend a suicide bereavement support group as they felt 33 counsellors could not “possibly understand what’s going on in my head, like unless they’ve 34 35 been through it”. Others spoke of wanting to talk to others “with similar experiences” 36 37 because “I think it’s important for me to feel that I’m not the only one going through this”. 38 39 Additionally, one participant felt that she would benefit from it “because I do find I’m alone on September 30, 2021 by guest. Protected copyright. 40 in my thoughts of it and I’m interested in getting other peoples stories so I can relate [to it]”. 41 42 However, no such support groups were available for any of the participants. A small number 43 44 of participants reported that they did not require any formal support. One participant spoke 45 with their husband about whether they needed counselling and both concluded that they 46 47 can “hack this” on their own. Specifically, two participants who noted they did not require 48 49 formal support were engaging in over-eating and excessive alcohol consumption as coping 50 51 mechanisms. 52 53 Reconstructing life after deceased’s suicide 54 55 56 57 58 14 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 15 of 31 BMJ Open
1 2 3 Each participant was confronted with trying to comprehend, make sense of, and reconstruct 4 5 aspects of their lives following their family member’s suicide. Participants were particularly 6 concerned with aspects of their wellbeing. Some spoke about finding it difficult to look 7 8 positively to the future. Some participants spoke about moving forward in terms of 9 10 relationships. One participant spoke about how “he [the deceased] was the person I was 11 supposed to spend the rest of my life with and looking to the future without him is…it’s hard 12 13 for me to do”. She explains how people often say to her “you’re young, you’re going to find 14 15 someone else…and have more kids”. However, she feels “that’s not for me now… I feel like I 16 For peer review only 17 had that experience with him, and I feel like I don’t want that with anyone else ever”. Some 18 participants spoke about seeking new relationships following their partner’s death. One 19 20 participant spoke about how her friends and her counsellor broached the topic of a new 21 22 relationship with her and she felt “why not…I have an awful lot of love to give”. Seeking new 23 24 relationships and friendships was an important aspect of moving forward for some 25 participants as “there was lots of times where I wouldn’t go out…but eventually I got it into 26 27 my head, I went out to the dancing on a Wednesday night, I said make new friends…and 28 29 then I met this new girl last year before Christmas”. 30 31 In terms of wellbeing, a small minority of participants were unable to experience positive http://bmjopen.bmj.com/ 32 33 thoughts following the suicide. One spoke about wondering “what’s the point in 34 living…that’s what’s killing me”. Another participant spoke about she no longer socialises 35 36 since her partner’s death and becomes depressed following constant rumination about his 37 38 death: 39 on September 30, 2021 by guest. Protected copyright. 40 “I don’t socialise the way I used to before with other people…the tv might be on but I’d have 41 42 no interest, I’d be just thinking away to myself and get depressed about it then” (spouse) 43 44 Conversely, the majority of participants spoke about how while they had negative thoughts, 45 46 they were often able to balance these with more positive thoughts. One participant noted 47 48 that simple things like turning on the radio so there’s “something on in the house” or 49 50 watching a DVD with his children helps as he “enjoys it when we’re all together”. Various 51 other social activities and past-times such as walking and gardening were endorsed by some 52 53 as helping during the grieving process. One participant spoke about how she uses yoga as a 54 55 means of “being present” and to tell herself that she’s “ok” even when “there are still 56 images in my head” after finding the deceased. A further participant stated they were “very 57 58 15 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 16 of 31
1 2 3 positive” and engaged in walking and “a bit of photography” which helped him in “hanging 4 5 together fairly well”. 6 7 Part of this reconstruction was also about reappraising what was important to them and 8 9 how they thought about life. Some participants chose to make big life changes after the 10 death, including moving homes, changing jobs or completely disengaging from the work 11 12 environment: 13 14 “I haven’t gone back to my old job in [big city], you know life has changed and I was working 15 16 long days and didn’tFor really peer have a life, now,review I’m looking back only and saying, there’s a little bit 17 18 more to life than that you know?” (spouse) 19 20 Two participants moved house soon after the death. One described that she “couldn’t stay 21 22 there” as the death occurred in the house. The other participant was forced to sell the 23 24 house to pay off the debts the deceased had accumulated but had hidden from his partner. 25 The participant felt a sense of rejection and betrayal that the deceased didn’t trust her 26 27 enough to speak to her about their spiralling debts. She would have “toughed it out and said 28 29 to him ok what are we going to do about it” but she feels he was afraid to tell her as “I 30 31 suppose he thought I’d leave him”. Three participants were in the process of selling their http://bmjopen.bmj.com/ 32 properties or had a strong desire to move at the time of the interview as one felt she could 33 34 not “move forward while I’m in this house presently” due to her experience of visions of the 35 36 deceased in the house. 37 38 Quantitative results 39 on September 30, 2021 by guest. Protected copyright. 40 Characteristics of decedents and family members 41 42 43 Characteristics of the 33 suicide decedents and family members bereaved by suicide are 44 45 presented in Table 1. The majority of suicide decedents were male (72.7%), aged 40-59 46 years (42.4%), were single (42.4%) at the time of death, and died by hanging (57.6%). While, 47 48 just over half of the suicide-bereaved family members were female (54.5%) and aged 49 50 between 40-59 years (57.6%). The most commonly represented kinship was partner/spouse 51 (36.4%). The majority of suicide decedents were educated to secondary school level 52 53 (39.4%), followed by one quarter (27.3%) and one fifth (21.2%) were educated to post- 54 55 leaving certificate and third level, respectively. The majority of suicide decedents (42.4%) 56 57 58 16 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 17 of 31 BMJ Open
1 2 3 were employed/self-employed prior to their death. Data for the other educational and 4 5 employment categories were not presented to maintain confidentiality. Hanging was the 6 most common method of suicide (57.6%), with over half of the sample having a history of 7 8 intentional self-harm prior to their suicide (54.5%). Just under a half of suicide decedents 9 10 (45.5%) left a suicide note. 11
12 13 14 15 16 For peer review only 17 Table 1: Characteristic of suicide decedents and suicide-bereaved family members (n = 33) 18 Suicide decedents N (%) Family members N (%) 19 20 Sex 21 22 Male 24 (72.7) 15 (45.5) 23 Female 9 (27.3) 18 (54.5) 24 25 Age 26 27 18-39 years 9 (27.3) 7 (21.2) 28 29 40-59 years 14 (42.2) 19 (57.6) 30 60+ years 10 (30.3) 7 (21.2) 31 http://bmjopen.bmj.com/ 32 Interviewee’s relationship to deceased 33 34 Partner/Spouse 12 (36.4) 35 Parent 7 (21.2) 36 37 Sibling 9 (27.3) 38 39 Child 5 (15.2) on September 30, 2021 by guest. Protected copyright. 40 41 Marital status 42 Single 14 (42.2) 43 44 Married/co-habiting 12 (36.4) 45 46 Widowed/divorced/separated 7 (21.2) 47 48 49 Wellbeing outcomes (DASS-21 scale) 50 51 Median scores on the DASS-21 were highest for stress (Mdn = 12.00, IQR = 11.00), followed 52 53 by depression (Mdn = 4.00, IQR = 8.00) and anxiety (Mdn = 2.00, IQR = 5.00). Nearly one- 54 quarter of the sample (24.2%) had scores that indicated the presence of at least mild levels 55 56 of depression. One in four suicide-bereaved family members (27.3%) had scores that 57 58 17 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 18 of 31
1 2 3 indicated the presence of at least mild levels of stress. Just under a fifth of participants 4 5 (18.2%) had scores that indicated the presence of at least mild levels of anxiety (Table 2). 6 These outcomes refer to participants’ wellbeing in the week before the interview. 7 8 9 10 11 12 13 14 15 16 Table 2: DescriptiveFor statistics peer of DASS-21 review scale scores only 17 Median (IQR) Range Above “normal” cut-off N (%)1 18 19 Depression score 4.00 (8.00) 0-34 8 (24.2) 20 Anxiety score 2.00 (5.00) 0-24 6 (18.2) 21 22 Stress score 12.00 (11.00) 0-28 9 (27.3) 23 24 Total score 18.00 (26.00) 0-76 25 26 27 A Mann-Whitney U test revealed no significant difference in the levels of depression (p = 28 29 .47), anxiety (p = .37) and stress (p = .81) between suicide-bereaved males and females 30
(Table 3). A Mann-Whitney U test also revealed no significant differences for levels of http://bmjopen.bmj.com/ 31 32 depression (p = .43), anxiety (p = .45) and stress (p = .61) between those bereaved by 33 34 hanging and non-hanging suicides (Table 3). 35 36 Table 3: DASS-21 median rank scores by gender and method of suicide 37
38 2 39 Males Females p Hanging Non-hanging p on September 30, 2021 by guest. Protected copyright. 40 N = 15 N = 18 N = 19 N = 14 41 42 Variable Median (IQR) 43 Depression score 4.00 (10.00) 4.00 (7.00) .47 4.00 (6.00) 4.00 (13.00) .43 44 45 Anxiety score 2.00 (2.00) 3.00 (14.00) .37 2.00 (6.00) 2.00 (6.00) .45 46 47 Stress score 12.00 (12.00) 11.00 (11.00) .81 10.00 (10.00) 13.00 (13.00) .61 48 Total score 18.00 (26.00) 18.00 (32.00) .93 18.00 (14.00) 19.00 (29.00) .74 49 50 51 52 DISCUSSION 53 54
55 1 Scores of ≥10 for depression, ≥8 for anxiety and ≥15 for stress 56 2 Includes every other method besides hanging 57 58 18 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 19 of 31 BMJ Open
1 2 3 Principal findings 4 5 The qualitative and quantitative aspects of this study provides insight into the 6 unique grief processes and health impacts experienced by family members bereaved by 7 8 suicide. The qualitative study further addresses a significant gap in the literature by 9 10 exploring the physical, psychosomatic health experiences and health behaviours of suicide- 11 12 bereaved family members. Results from the quantitative component of this study indicate 13 that a sizeable minority of suicide-bereaved family members experienced elevated levels of 14 15 depression, anxiety, and stress. Other empirical studies have found similar rates of 16 For peer review only 17 depression and anxiety amongst suicide-bereaved people to the current study, with one 18 19 study finding that 18% of the sample were moderately to severely depressed, as measured 20 on the PHQ-9, while 21% reported anxiety symptoms on the GAD- 2[42]. Furthermore, the 21 22 prevalence of depression in family members bereaved by suicide was reported in previous 23 24 studies as 30.5%[11] and 23%[43]. Other studies of nonclinical samples of adults had lower 25 median scores on the DASS-21 scale when compared to the suicide-bereaved median scores 26 27 found in this study[44 45]. Therefore, this indicates that those bereaved by suicide may have 28 29 higher rates of depression, anxiety and stress compared to nonclinical adult samples. 30 31 One possible explanation for the lower than expected prevalence of depression, http://bmjopen.bmj.com/ 32 33 anxiety and/or stress in our sample may be selection bias. Those family members who chose 34 35 to take part in the study may have had lower levels of psychopathology or difficulties with 36 the grieving process than other bereaved family members, and therefore may have been 37 38 more likely to take part in the study. One recent population-based study compared suicide- 39 on September 30, 2021 by guest. Protected copyright. 40 bereaved parents with matched non-bereaved parents: 20.5% of suicide-bereaved parents 41 42 refused to take part or to complete the study on the grounds of distress or ill-health, 43 compared to just 7.6% of non-suicide bereaved parents[42]. This suggests that those who 44 45 agree to take part in suicide bereavement research may be in better health than those who 46 47 declined to participate. Consequently, the number of suicide-bereaved people experiencing 48 high levels of depression, anxiety, and/or stress in this study and other empirical research 49 50 may be an underestimate of the true figure. Findings from the qualitative interviews 51 52 indicate that the initial feelings experienced by family members bereaved by suicide include 53 54 disbelief, shock, blame, guilt and anger. These mirror findings from other qualitative studies 55 [28]. Our qualitative and quantitative results indicate that suicide-bereaved family members 56 57 58 19 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 20 of 31
1 2 3 experience a number of adverse psychological problems including, depression, anxiety, 4 5 panic attacks, suicidal thoughts, intrusive images, nightmares and PTSD. In addition, a 6 number of participants also experienced adverse psychosomatic health experiences 7 8 including feelings of nausea, vomiting, chest pains, palpitations, physical pain, abdominal 9 10 pains, and breathlessness. In some cases, these symptoms continued in the months after 11 the death and were associated with diagnoses such as hypertension, diverticulitis and type 1 12 13 diabetes. Bolton and colleagues[11] took a quantitative approach and similarly found that 14 15 suicide-bereaved parents had significantly higher rates of cardiovascular disease, chronic 16 For peer review only 17 obstructive pulmonary disease, hypertension, diabetes, depression and anxiety disorders 18 compared accident-bereaved parents. Additionally, a recent systematic review noted that 19 20 there is tentative evidence to suggest that suicide-bereaved family members have an 21 22 increased risk for a number of adverse physical health outcomes compared to people 23 24 bereaved by other causes of death[11 13-15 46]. Therefore, this study corroborates these 25 previous findings that people bereaved by suicide can experience adverse physical and 26 27 psychological health outcomes. 28 29 The quantitative and particularly the qualitative component of this study illustrate 30 31 the difficulties encountered by family members bereaved by suicide and consequently, the http://bmjopen.bmj.com/ 32 33 support they require. Research compiled by Grad and colleagues[47] underlies the 34 importance of those bereaved by suicide having the opportunity to seek support from 35 36 outside the family. Some participants spoke of the desire to attend a suicide support group. 37 38 However, there is little research on the effectiveness of these groups for those bereaved by 39 on September 30, 2021 by guest. Protected copyright. 40 suicide[48]. It was also clear from the interviews that financial difficulties in the aftermath of 41 the suicide were unfortunately common and prevented many from accessing formal support 42 43 services. Participants spoke about having to halt their counselling sessions due to a lack of 44 45 money to pay for the service. Reasons for financial difficulties varied and included inheriting 46 47 debts accrued by the deceased prior to the death or having to give up or take a break from 48 work due to grieving difficulties. Another study found that duration of support was 49 50 important, with 27% of people believing they required professional help for at least 12 51 52 months following the death. Furthermore, 25% and 17.4% reported needing support for at 53 least two years, or for as long as required[23]. These points underlie the importance of not 54 55 56 57 58 20 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 21 of 31 BMJ Open
1 2 3 only providing timely and effective support to people bereaved by suicide but also support 4 5 that does not preclude people due to their financial circumstances. 6 7 The findings from the semi-structured interviews corroborate the quantitative 8 9 results of family members’ wellbeing, as measured by the DASS-21 scale. The quantitative 10 scale found that nearly one quarter of family members had scores that indicated at least 11 12 mild levels of depression. Furthermore, 1 in four and nearly 1 in five had a least mild levels 13 14 of stress and anxiety, respectively. The qualitative interviews provided a greater insight into 15 these difficulties through participants’ descriptions of visions/nightmares, suicidal ideation, 16 For peer review only 17 suicide attempts and physician-diagnosed depression, anxiety and PTSD in the months 18 19 following the suicide. Additionally, this mixed-methods study identified a gap in the 20 21 literature relating to qualitative research specifically exploring the physical and 22 psychosomatic health experiences in family members bereaved by suicide. Going forward, 23 24 further quantitative research investigating the association between suicide bereavement 25 26 and objective measures of physical health is required. 27 28 Strengths and limitations 29 30 31 This is the first mixed-methods study to specifically examine and explore the physical and http://bmjopen.bmj.com/ 32 psychological health implications of suicide bereavement from both a quantitative and a 33 34 qualitative perspective. The mixed-methods approach and the comprehensive recruitment 35 36 process involved is a key strength of this study. The quantitative data for this study was 37 derived from the larger SSIS-ACE case-control study which included consecutive cases of 38 39 suicide and open verdict cases that met the Rosenberg criteria for the determination of on September 30, 2021 by guest. Protected copyright. 40 41 suicide which were identified via examining coroner’s records [32]. Basic information about 42 43 the case and next-of-kin information was collected. Family members were initially contacted 44 via letter and telephone to take part in a psychological autopsy study. Data on family 45 46 members’ wellbeing was collected at the end of the psychological autopsy interview. This 47 48 data was analysed and forms the quantitative component of this mixed-methods study. 49 50 Following their participation in the larger case-control study, those who provided written 51 consent for follow-up were contacted by the first author of this paper to take part in an 52 53 additional qualitative interview about their experiences following the suicide. Recruitment 54 55 of the family members via coroner’s records and the consecutive nature of the suicide and 56 open verdict cases reduces the likelihood of selection bias, which is often a significant 57 58 21 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 22 of 31
1 2 3 problem in research addressing vulnerable populations[49]. The validity of this research can 4 5 be considered good as this research covered both confirmed suicide deaths and open 6 verdicts deaths as these may in fact be hidden suicide cases[50-52]. Furthermore, 7 8 researchers have recommended that such cases meeting criteria for a probable suicide 9 10 should be included in future research studies[51]. The combination of quantitative and 11 qualitative research provides a clear indication of the challenges and health problems 12 13 encountered by family members bereaved by suicide. 14 15 While the numbers of suicide-bereaved family members in the study is modest, the 16 For peer review only 17 quantitative results are similar to those obtained in larger studies, as previously stated[11 18 19 43]. The interviewer for the qualitative component of the study (AS) did not conduct any of 20 21 the interviews for the SSIS-ACE study, which minimises the risk of interviewer bias in the 22 mixed-methods study. This study has two main limitations. Firstly, family members’ physical 23 24 health experiences were self-reported and therefore do not constitute an objective 25 26 measure. An objective measure of physical health would remove any potential for recall bias 27 28 in participants’ responses. However, the focus of the qualitative component of the study is 29 to understand family member’s experience of their own health, rather than objective health 30 31 status. Secondly, the relatively small quantitative sample size did not allow for more http://bmjopen.bmj.com/ 32 33 sophisticated statistical analyses, including controlling for potential confounding factors 34 such as closeness to the deceased, kinship and time since death which may have impacted 35 36 on the results presented. Further mixed-methods research examining an objective measure 37 38 of physical health would be a significant addition to the knowledge base. 39 on September 30, 2021 by guest. Protected copyright. 40 Implications 41 42 43 Considering previous research in the area, this study adds to the existing knowledge-base in 44 a number of ways. While the mental health outcomes of suicide bereavement have been 45 46 well-researched, there has been a dearth of research specifically examining the physical and 47 48 psychosomatic health outcomes of suicide bereavement from an experiential perspective. 49 50 Several implications arise from this research for professionals seeking to support people 51 bereaved by suicide. First, equal attention needs to be given to the physical and emotional 52 53 sequelae following suicide bereavement by clinicians. This research suggests that one in 54 55 four people bereaved by suicide will suffer elevated levels of depression and stress and just 56 under one in five will have elevated levels of anxiety. Second, it was clear that, due to 57 58 22 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 23 of 31 BMJ Open
1 2 3 mental and physical health difficulties, some people were not able to effectively identify or 4 5 seek support. This underlies the importance of health professionals, coroners and any other 6 professional to pro-actively facilitate support for those bereaved by suicide. This 7 8 professional support is especially important when strained or fractured familial relations 9 10 affect the quality of the bereaved person’s informal support network. 11 12 13 14 Author affiliations 15 16 1 School of PublicFor Health, Universitypeer College review Cork, Cork, Ireland only 17 18 2 19 National Suicide Research Foundation, University College Cork, Cork, Ireland 20 21 3Department of Emergency Medicine, University of Massachusetts Medical School, 22 23 Worcester, MA, USA 24 25 Acknowledgements 26 27 The authors would like to thank all of those who took the time to take part in the interviews. 28 29 The authors would also like to acknowledge Dr Christina Dillon for her guidance with respect 30
to the quantitative data analysis. http://bmjopen.bmj.com/ 31 32 33 Author’s contribution 34 35 AS drafted the initial protocol document. AS, CL, EA and PC contributed to the design of the 36 study. KMS, CL, PC and EA contributed to planned analyses. KMS, CL, EA and PC contributed 37 38 to revising drafts. All authors contributed to the final manuscript. 39 on September 30, 2021 by guest. Protected copyright. 40 Funding statement 41 42 This work was conducted as part of the SPHeRE Programme under Grant No. 43 44 SPHeRE/2013/1. I would also like to acknowledge the funding received from the Health 45 46 Research Board to conduct the original SSIS-ACE case-control study, Grant No. HRA-2013- 47 PHR-438 and the National Office for Suicide Prevention for providing funding for the 48 49 supervision of this research. 50 51 Competing interests 52 53 None 54 55 Exclusive licence statement 56 57 58 23 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 24 of 31
1 2 3 The Corresponding Author has the right to grant on behalf of all authors and does grant on 4 5 behalf of all authors, a worldwide licence to the Publishers and its licensees in perpetuity, in 6 all forms, formats and media (whether known now or created in the future), to i) publish, 7 8 reproduce, distribute, display and store the Contribution, ii) translate the Contribution into 9 10 other languages, create adaptations, reprints, include within collections and create 11 summaries, extracts and/or, abstracts of the Contribution, iii) create any other derivative 12 13 work(s) based on the Contribution, iv) to exploit all subsidiary rights in the Contribution, v) 14 15 the inclusion of electronic links from the Contribution to third party material where-ever it 16 For peer review only 17 may be located; and, vi) licence any third party to do any or all of the above. 18 19 Ethical approval 20 21 Ethical approval has been granted from the Clinical Research Ethics Committee of University 22 23 College Cork, reference number: ECM 4 (o) 19/01/2016.Ethical approval was also granted 24 25 from the Clinical Research Ethics Committee of University College Cork, for the SSIS-ACE 26 study, reference number: ECM 5(5) 01/04/2014. 27 28 29 Data sharing statement 30 31 The data recorded, transcribed and analysed is very sensitive in nature. Due to the relatively http://bmjopen.bmj.com/ 32 33 small number of participants and the specific geographic location, it would not be 34 35 appropriate to consider data sharing due to the risk of people being potentially identified. 36 37 References 38 39 1. World Health Organisation. Preventing Suicide: A Global Imperative. Luxembourg, 2014:89. on September 30, 2021 by guest. Protected copyright. 40 2. Berman AL. Estimating the Population of Survivors of Suicide: Seeking an Evidence Base. Suicide 41 Life Threat. Behav. 2011;41(1):110-16 doi: 10.1111/j.1943-278X.2010.00009.x[published 42 Online First: Epub Date]|. 43 3. Andriessen K, Rahman B, Draper B, Dudley M, Mitchell PB. Prevalence of exposure to suicide: A 44 meta-analysis of population-based studies. J. Psychiatr. Res. 2017;88:113-20 doi: 45 http://dx.doi.org/10.1016/j.jpsychires.2017.01.017[published Online First: Epub Date]|. 46 4. Pitman A, Osborn D, King M, Erlangsen A. Effects of suicide bereavement on mental health and 47 suicide risk. The Lancet Psychiatry 2014;1(1):86-94 doi: 10.1016/s2215-0366(14)70224- 48 x[published Online First: Epub Date]|. 49 5. Rostila M, Saarela J, Kawachi I. Suicide following the death of a sibling: a nationwide follow-up 50 study from Sweden. BMJ Open 2013;3(4) doi: 10.1136/bmjopen-2013-002618[published 51 Online First: Epub Date]|. 52 6. Pitman AL, Osborn DPJ, Rantell K, King MB. Bereavement by suicide as a risk factor for suicide 53 attempt: a cross-sectional national UK-wide study of 3432 young bereaved adults. BMJ Open 54 55 2016;6(1) doi: 10.1136/bmjopen-2015-009948[published Online First: Epub Date]|. 56 57 58 24 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 25 of 31 BMJ Open
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1 2 3 psychiatric morbidity survey in South London. BMC Psychiatry 2014;14(1):275 doi: 4 10.1186/s12888-014-0275-y[published Online First: Epub Date]|. 5 23. Wilson A, Marshall A. The support needs and experiences of suicidally bereaved family and 6 friends. Death Stud. 2010;34(7):625-40 7 24. Sugrue JL, McGilloway S, Keegan O. The Experiences of Mothers Bereaved by Suicide: An 8 Exploratory Study. Death Stud. 2013;38(2):118-24 doi: 9 10.1080/07481187.2012.738765[published Online First: Epub Date]|. 10 25. McKinnon JM, Chonody J. Exploring the Formal Supports Used by People Bereaved Through 11 Suicide: A Qualitative Study. Social Work in Mental Health 2014;12(3):231-48 doi: 12 10.1080/15332985.2014.889637[published Online First: Epub Date]|. 13 26. Hjelmeland H, Knizek BL. Why we need qualitative research in suicidology. Suicide Life Threat. 14 Behav. 2010;40(1):74-80 doi: 10.1521/suli.2010.40.1.74[published Online First: Epub Date]|. 15 27. Ellenbogen S, Gratton F. Do They Suffer More? Reflections on Research Comparing Suicide 16 Survivors Forto Other Survivors. peer Suicide review Life Threat. Behav. 2001;only31(1):83-90 doi: 17 18 10.1521/suli.31.1.83.21315[published Online First: Epub Date]|. 19 28. Shields C, Kavanagh M, Russo K. A Qualitative Systematic Review of the Bereavement Process 20 Following Suicide. Omega: Journal of Death & Dying 2017;74(4):426-54 doi: 21 10.1177/0030222815612281[published Online First: Epub Date]|. 22 29. Rogers J, Apel S. Revitalizing suicidology: A call for mixed methods designs. Suicidology Online 23 2010;1:95-98 24 30. Creswell JW. A Concise Introduction to Mixed Methods Research. Los Angeles: SAGE Publications, 25 2015. 26 31. Spillane A, Larkin C, Corcoran P, Matvienko-Sikar K, Arensman E. What are the physical and 27 psychological health effects of suicide bereavement on family members? Protocol for an 28 observational and interview mixed-methods study in Ireland. BMJ Open 2017;7(3):e014707 29 doi: 10.1136/bmjopen-2016-014707[published Online First: Epub Date]|. 30 32. Rosenberg ML, Davidson LE, Smith JC, et al. Operational criteria for the determination of suicide. 31 J. Forensic Sci. 1988;33(6):1445-56 http://bmjopen.bmj.com/ 32 33. Isometsä ET. Psychological autopsy studies – a review. Eur. Psychiatry 2001;16(7):379-85 doi: 33 http://dx.doi.org/10.1016/S0924-9338(01)00594-6[published Online First: Epub Date]|. 34 34. Conner KR, Beautrais AL, Brent DA, Conwell Y, Phillips MR, Schneider B. The next generation of 35 psychological autopsy studies. Part I. Interview content. Suicide Life Threat. Behav. 36 2011;41(6):594-613 doi: 10.1111/j.1943-278X.2011.00057.x[published Online First: Epub 37 Date]|. 38 39 35. Freuchen A, Kjelsberg E, Grøholt B. Suicide or accident? A psychological autopsy study of suicide on September 30, 2021 by guest. Protected copyright. 40 in youths under the age of 16 compared to deaths labeled as accidents. Child and adolescent 41 psychiatry and mental health 2012;6:30-30 doi: 10.1186/1753-2000-6-30[published Online 42 First: Epub Date]|. 43 36. Wong PWC, Chan WSC, Chen EYH, Chan SSM, Law YW, Yip PSF. Suicide among adults aged 30– 44 49: A psychological autopsy study in Hong Kong. BMC Public Health 2008;8:147-47 doi: 45 10.1186/1471-2458-8-147[published Online First: Epub Date]|. 46 37. Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the 47 Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. 48 Behav. Res. Ther. 1995;33(3):335-43 49 38. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety & Stress Scales. 2nd Edition ed. 50 Sydney Psychology Foundation 1995. 51 39. Cheung T, Wong SY, Wong KY, et al. Depression, Anxiety and Symptoms of Stress among 52 Baccalaureate Nursing Students in Hong Kong: A Cross-Sectional Study. Int. J. Environ. Res. 53 Public Health 2016;13(8) doi: 10.3390/ijerph13080779[published Online First: Epub Date]|. 54 40. Parkitny L, McAuley J. The Depression Anxiety Stress Scale (DASS). J. Physiother. 2010;56(3):204 55 doi: 10.1016/S1836-9553(10)70030-8[published Online First: Epub Date]|. 56 57 58 26 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 27 of 31 BMJ Open
1 2 3 41. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 4 2006;3(2):77-101 doi: 10.1191/1478088706qp063oa[published Online First: Epub Date]|. 5 42. Omerov P, Steineck G, Dyregrov K, Runeson B, Nyberg U. The ethics of doing nothing. Suicide- 6 bereavement and research: ethical and methodological considerations. Psychol. Med. 7 2014;44(16):3409-20 8 43. Melhem NM, Walker M, Moritz G, Brent DA. Antecedents and sequelae of sudden parental death 9 in offspring and surviving caregivers. Arch. Pediatr. Adolesc. Med. 2008;162(5):403-10 doi: 10 10.1001/archpedi.162.5.403[published Online First: Epub Date]|. 11 44. Sinclair SJ, Siefert CJ, Slavin-Mulford JM, Stein MB, Renna M, Blais MA. Psychometric evaluation 12 and normative data for the depression, anxiety, and stress scales-21 (DASS-21) in a 13 nonclinical sample of U.S. adults. Eval. Health Prof. 2012;35(3):259-79 doi: 14 10.1177/0163278711424282[published Online First: Epub Date]|. 15 45. Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): 16 ConstructFor validity and peer normative data review in a large non-clinical only sample. Br. J. Clin. Psychol. 17 18 2005;44(2):227-39 doi: 10.1348/014466505X29657[published Online First: Epub Date]|. 19 46. Dyregrov K, Nordanger D, Dyregrov A. Predictors of psychosocial distress after suicide, SIDS and 20 accidents. Death Stud. 2003;27(2):143-65 doi: 10.1080/07481180302892[published Online 21 First: Epub Date]|. 22 47. Grad OT, Clark S, Dyregrov K, Andriessen K. What helps and what hinders the process of surviving 23 the suicide of somebody close? Crisis 2004;25(3):134-9 doi: 10.1027/0227- 24 5910.25.3.134[published Online First: Epub Date]|. 25 48. Andriessen K, Krysinska K. Essential questions on suicide bereavement and postvention. 26 International Journal of Environmental Research & Public Health [Electronic Resource] 27 2012;9(1):24-32 28 49. Maple M, Cerel J, Jordan JR, McKay K. Uncovering and Identifying the Missing Voices in Suicide 29 Bereavement. Suicidology Online 2014;5:1-12 30 50. Pritchard C, Hansen L. Examining undetermined and accidental deaths as source of 'under- 31 reported-suicide' by age and sex in twenty Western countries. Community Ment. Health J. http://bmjopen.bmj.com/ 32 2015;51(3):365-76 doi: 10.1007/s10597-014-9810-z[published Online First: Epub Date]|. 33 51. Bakst SS, Braun T, Zucker I, Amitai Z, Shohat T. The accuracy of suicide statistics: are true suicide 34 deaths misclassified? Soc. Psychiatry Psychiatr. Epidemiol. 2016;51(1):115-23 doi: 35 10.1007/s00127-015-1119-x[published Online First: Epub Date]|. 36 52. Chang SS, Sterne JA, Lu TH, Gunnell D. 'Hidden' suicides amongst deaths certified as 37 undetermined intent, accident by pesticide poisoning and accident by suffocation in Taiwan. 38 39 Soc. Psychiatry Psychiatr. Epidemiol. 2010;45(2):143-52 doi: 10.1007/s00127-009-0049- on September 30, 2021 by guest. Protected copyright. 40 x[published Online First: Epub Date]|. 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 27 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 28 of 31
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 Figure 1: Flowchart of recruitment process for SSIS-ACE study 46 47 176x240mm (300 x 300 DPI) 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 29 of 31 BMJ Open
1 2 3 Consolidated criteria for reporting qualitative studies (COREQ): 4 5 32-item checklist 6 7 Developed from: 8 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 9 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 10 2007. Volume 19, Number 6: pp. 349 – 357 11 12 YOU MUST PROVIDE A RESPONSE FOR ALL ITEMS. ENTER N/A IF NOT 13 APPLICABLE 14 15 No. Item Guide questions/description Reported on 16 For peer review only Page # 17 Domain 1: Research team 18 and reflexivity 19 Personal Characteristics 20 21 1. Inter viewer/facilitator Which author/s conducted the inter view or 6 (in protocol) 22 focus group? 23 2. Credentials What were the researcher’s credentials? 6 (in protocol) 24 E.g. PhD, MD 25 3. Occupation What was their occupation at the time of 6 (in protocol) 26 the study? 27 4. Gender Was the researcher male or female? 6 (in protocol) 28 5. Experience and training What experience or training did the 6 (in protocol) 29 researcher have? 30 Relationship with http://bmjopen.bmj.com/ 31 participants 32 6. Relationship established Was a relationship established prior to 3 (in protocol) 33 study commencement? 34 35 7. Participant knowledge of What did the participants know about the 4 (in protocol) 36 the interviewer researcher? e.g. personal goals, reasons 37 for doing the research 38 8. Interviewer What characteristics were reported about 6 (in protocol) 39 characteristics the inter viewer/facilitator? e.g. Bias, on September 30, 2021 by guest. Protected copyright. 40 assumptions, reasons and interests in the 41 research topic 42 Domain 2: study design 43 Theoretical framework 44 9. Methodological What methodological orientation was 3 (in protocol) 45 orientation and Theory stated to underpin the study? e.g. 46 grounded theory, discourse analysis, 47 ethnography, phenomenology, content 48 analysis 49 50 Participant selection 51 10. Sampling How were participants selected? e.g. 5-6 52 purposive, convenience, consecutive, 53 snowball 54 11. Method of approach How were participants approached? e.g. 5 55 face-to-face, telephone, mail, email 56 12. Sample size How many participants were in the study? 5-6 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from BMJ Open Page 30 of 31
1 2 3 13. Non-participation How many people refused to participate or 6 4 dropped out? Reasons? 5 Setting 6 7 14. Setting of data Where was the data collected? e.g. home, 7 8 collection clinic, workplace 9 15. Presence of non- Was anyone else present besides the 3 (in protocol) 10 participants participants and researchers? 11 16. Description of sample What are the important characteristics of 8 12 the sample? e.g. demographic data, date 13 Data collection 14 17. Interview guide Were questions, prompts, guides provided 5 (in protocol) 15 by the authors? Was it pilot tested? 16 18. Repeat interviewsFor peerWere repeat review inter views carried only out? If yes, 5 17 how many? 18 19. Audio/visual recording Did the research use audio or visual 5 19 recording to collect the data? 20 20. Field notes d notes made during and/or after 4 21 Were fiel 22 the inter view or focus group? 23 21. Duration What was the duration of the inter views or 7 24 focus group? 25 22. Data saturation Was data saturation discussed? 6 (in protocol) 26 23. Transcripts returned Were transcripts returned to participants 6 (in protocol) 27 for comment and/or correction? 28 Domain 3: analysis and 29 findings 30 Data analysis http://bmjopen.bmj.com/ 31 24. Number of data coders How many data coders coded the data? 8 32 25. Description of the Did authors provide a description of the 9-16 33 coding tree coding tree? 34 35 26. Derivation of themes Were themes identified in advance or 5-6 (in protocol), 8 36 derived from the data? 37 27. Software What software, if applicable, was used to 8 38 manage the data? 39 28. Participant checking Did participants provide feedback on the 6 (in protocol) on September 30, 2021 by guest. Protected copyright. 40 findings? 41 Reporting 42 29. Quotations presented Were participant quotations presented to 9-16 43 illustrate the themes/findings? Was each 44 quotation identified? e.g. participant 45 number 46 30. Data and findings Was there consistency between the data 20-21 47 consistent 48 presented and the findings? 31. Clarity of major themes Were major themes clearly presented in 9-16 49 50 the findings? 51 32. Clarity of minor themes Is there a description of diverse cases or 9-16 52 discussion of minor themes? 53 54 Once you have completed this checklist, please save a copy and upload it as part 55 of your submission. When requested to do so as part of the upload process, 56 please select the file type: Checklist. You will NOT be able to proceed with 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml BMJ Open: first published as 10.1136/bmjopen-2017-019472 on 13 January 2018. Downloaded from Page 31 of 31 BMJ Open
1 2 3 submission unless the checklist has been uploaded. Please DO NOT include this 4 checklist as part of the main manuscript document. It must be uploaded as a 5 separate file. 6 7 8 9 10 11 12 13 14 15 16 For peer review only 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 http://bmjopen.bmj.com/ 32 33 34 35 36 37 38 39 on September 30, 2021 by guest. Protected copyright. 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml