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Parents who have lost a son or daughter through suicide: towards improved care and restored psychological health
Ersta Sköndal University College, Department of Health Care Sciences.ORCID iD: 0000-0003-1835-1960
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Parents that have lost a son or daughter through suicide are at risk of developing psychological morbidity that may become long-lasting and even life-threatening. Despite this the aftermath of a suicidal loss is yet to be carefully studied. One reason for the lack of studies is that trauma-related surveys may be hindered when the risks of asking participants are overestimated and the benefits not considered. Another reason is methodological difficulties. The goal of our studies is to provide knowledge that may be used to improve the professional care of suicide-bereaved parents. This thesis describes the first steps towards the goal.

Methods We developed hypotheses, questionnaires and an ethical protocol in a qualitative preparatory study with 46 suicide-bereaved parents (paper I). In a population-based survey we then collected data from parents who lost a child (15 to 30 years of age) to suicide, two to five years earlier. In all, 666 of 915 (73%) bereaved and 508 of 666 (74%) non-bereaved (matched 2:1) parents participated.

Results We found that 633 (95%) of the bereaved parents thought the study was valuable and that 604 (91%) would recommend another parent to participate. Among the bereaved 334 (50%) reported being positively affected by their participation, whereas 70 (11%) reported being temporary negatively affected (most referring to sadness). The bereaved parents’ need for sharing their experiences regarding the suicide of their child was widely expressed and 639 (96%) thought the healthcare should contact parents bereaved through suicide to offer information and support (paper II). In all, 167 (25%) of the bereaved parents were currently taking antidepressants or were moderate-to severely depressed according to PHQ-9 versus 35 (9%) of the non-bereaved (RR 2.7). Fourteen percent of the bereaved reported they had had psychological morbidity more than 10 years earlier, versus 14% among the non-bereaved (RR 1.0). The highest levels of current psychological morbidity were found among the group of bereaved parents with psychological premorbidity (paper III). Of the bereaved parents 460 had (69%) viewed the body at a formal setting, among these parents 430 of 446 (96%) answered “no” to the question “Do you regret that you viewed your child after the death”. Among the parents that had not viewed 99 of 159 (62%) answered “no” to the question “Do you wish that you had viewed your child after the death” (paper IV).

Conclusions We found that most parents perceived the research participation as something positive and that the contact was welcomed. Bereavement was associated with high prevalence of psychological morbidity two to five years after the loss. We found no difference in prevalence of premorbidity between the bereaved and the non-bereaved parents. The significant minority that had premorbidity before the loss did however report the highest levels of current psychological morbidity. By and large everyone that had viewed their deceased child in a formal setting did not regret the viewing. Of equal importance, more than half of those who did not view the body did not wish that they had.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet , 2014. , 85 p.
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-4816Libris ID: 15086441ISBN: 9789175492827 (print)OAI: oai:DiVA.org:esh-4816DiVA: diva2:849735
Public defence
2014-01-20, 10:00
Opponent
Supervisors
Available from: 2015-09-18 Created: 2015-08-31 Last updated: 2017-01-17Bibliographically approved
List of papers
1. Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden
Open this publication in new window or tab >>Preparatory studies to a population-based survey of suicide-bereaved parents in Sweden
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2013 (English)In: Crisis, ISSN 0227-5910, E-ISSN 2151-2396, Vol. 34, no 3, 200-210 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: There is a need for evidence-based guidelines on how professionals should act following a suicide. In an effort to provide empiric knowledge, we designed a nationwide population-based study including suicide-bereaved parents.

AIM: To describe the process from creating hypotheses through interviews to the development of a population-based questionnaire.

METHOD: We used interviews, qualitative analysis and various means of validation to create a study-specific questionnaire to be used in a nonselected nationwide population of suicide-bereaved parents and a control population of nonbereaved (N = 2:1). The Swedish Register of Causes of Death and the Multigeneration Register were used to identify eligible individuals. All presumptive participants received a letter of invitation followed by a personal contact.

RESULTS: We developed a questionnaire covering the participants' perception of participation, their daily living, psychological morbidity, professional actions, and other experiences in immediate connection to the time before and after the suicide. Almost three out of four parents (bereaved = 666, nonbereaved = 377) responded to the questionnaire.

CONCLUSIONS: By involving parents early in the research process we were able to create a questionnaire that generated a high participation rate in a nationwide population-based study that might help us to answer our hypotheses about bereavement after suicide.

Keyword
Suicide, Bereavement, Questionnaires, Data collection, Research design
National Category
Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-4129 (URN)23261907 (PubMedID)
Available from: 2014-10-14 Created: 2014-10-14 Last updated: 2016-10-06Bibliographically approved
2. The ethics of doing nothing. Suicide-bereavement and research: ethical and methodological considerations
Open this publication in new window or tab >>The ethics of doing nothing. Suicide-bereavement and research: ethical and methodological considerations
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2014 (English)In: Psychological Medicine, ISSN 0033-2917, E-ISSN 1469-8978, Vol. 44, no 16, 3409-3420 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Valuable trauma-related research may be hindered when the risks of asking participants about traumatic events are not carefully weighed against the benefits of their participation in the research. Method The overall aim of our population-based survey was to improve the professional care of suicide-bereaved parents by identifying aspects of care that would be amenable to change. The study population included 666 suicide-bereaved and 377 matched (2:1) non-bereaved parents. In this article we describe the parents' perceptions of their contacts with us as well as their participation in the survey. We also present our ethical-protocol for epidemiological surveys in the aftermath of a traumatic loss.

RESULTS: We were able to contact 1410 of the 1423 eligible parents; eight of these parents expressed resentment towards the contact. Several participants and non-participants described their psychological suffering and received help because of the contact. A total of 666 suicide-bereaved and 377 non-bereaved parents returned the questionnaire. Just two out of the 1043 answered that they might, in the long term, be negatively affected by participation in the study; one was bereaved, the other was not. A significant minority of the parents reported being temporarily negatively affected at the end of their participation, most of them referring to feelings of sadness and painful memories. In parallel, positive experiences were widely expressed and most parents found the study valuable.

CONCLUSIONS: Our findings suggest, given that the study design is ethically sound, that suicide-bereaved parents should be included in research since the benefits clearly outweigh the risks.

Keyword
bereavement, epidemiologic methods, ethics, research design, suicide
National Category
Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-4128 (URN)10.1017/S0033291713001670 (DOI)23867073 (PubMedID)
Available from: 2014-10-14 Created: 2014-10-14 Last updated: 2015-09-18Bibliographically approved
3. Psychological morbidity among suicide-bereaved and non-bereaved parents: a nationwide population survey
Open this publication in new window or tab >>Psychological morbidity among suicide-bereaved and non-bereaved parents: a nationwide population survey
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2013 (English)In: BMJ Open, ISSN 2044-6055, Vol. 3, no 8, e003108Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To determine how psychological premorbidity affects the risk of depression in parents who lost a child through suicide.

DESIGN: Population-based survey.

SETTING: Sweden, between 2009 and 2010.

PARTICIPANTS: All parents who lost a child, age 15-30, through suicide between 2004 and 2007 according to National population registries. Non-bereaved parents matched for age, sex, living area, marital status, number of children.

EXCLUSION CRITERIA: born outside a Nordic country, not Swedish speaking, contact details missing. Participants: 666 of 915 (73%) suicide-bereaved and 377 of 508 (74%) non-bereaved parents.

MAIN OUTCOME MEASURES: Depression measured by the nine-item depression scale of the Patient Health Questionnaire (PHQ-9) and study-specific questions to assess psychological premorbidity and experience of the child's presuicidal morbidity.

RESULTS: In all, 94 (14%) suicide-bereaved and 51 (14%) non-bereaved parents (relative risk 1.0; 95% CI 0.8 to 1.4) had received their first treatment for psychological problems or had been given a psychiatric diagnosis more than 10 years earlier. The prevalence of moderate-to-severe depression was 115 (18%) in suicide-bereaved versus 28 (7%) in non-bereaved parents (RR 2.3; 95% CI 1.6 to 3.5). For those without psychological premorbidity, the relative risk was 2.3 (95% CI 1.4 to 3.6). 339 (51%) suicide-bereaved parents expressed worry over the child's psychological health during the month preceding the suicide and 259 (39%) had anticipated the suicide.

CONCLUSIONS: In parents who lost a child through suicide in Sweden we did not find a higher prevalence of long-term psychological premorbidity than among parents who had not lost a child; the more than twofold risk of depression among the bereaved can probably be explained by the suicide and the stressful time preceding the suicide.

National Category
Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-4127 (URN)10.1136/bmjopen-2013-003108 (DOI)23996818 (PubMedID)
Note

Funding The study was supported by The Swedish Council for Working Life Social Research (FAS), ALF Grants, County Council of Stockholm and Swedish Lundbeck foundation

Available from: 2014-10-14 Created: 2014-10-14 Last updated: 2015-09-18Bibliographically approved
4. Viewing the body after bereavement due to suicide: a population-based survey in Sweden
Open this publication in new window or tab >>Viewing the body after bereavement due to suicide: a population-based survey in Sweden
Show others...
2014 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 9, no 7, 1-9 p., e101799Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Research on the assumed, positive and negative, psychological effects of viewing the body after a suicide loss is sparse. We hypothesized that suicide-bereaved parents that viewed their childs body in a formal setting seldom regretted the experience, and that viewing the body was associated with lower levels of psychological morbidity two to five years after the loss.

METHODS AND FINDINGS: We identified 915 suicide-bereaved parents by linkage of nationwide population-based registries and collected data by a questionnaire. The outcome measures included the Patient Health Questionnaire (PHQ-9). In total, 666 (73%) parents participated. Of the 460 parents (69%) that viewed the body, 96% answered that they did not regret the experience. The viewing was associated with a higher risk of reliving the child's death through nightmares (RR 1.61, 95% CI 1.13 to 2.32) and intrusive memories (RR 1.20, 95% CI 1.04 to 1.38), but not with anxiety (RR 1.02, 95% CI 0.74 to 1.40) and depression (RR 1.25, 95% CI 0.85 to 1.83). One limitation of our study is that we lack data on the informants' personality and coping strategies.

CONCLUSIONS: In this Swedish population-based survey of suicide-bereaved parents, we found that by and large everyone that had viewed their deceased child in a formal setting did not report regretting the viewing when asked two to five years after the loss. Our findings suggest that most bereaved parents are capable of deciding if they want to view the body or not. Officials may assist by giving careful information about the child's appearance and other details concerning the viewing, thus facilitating mental preparation for the bereaved person. This is the first large-scale study on the effects of viewing the body after a suicide and additional studies are needed before clinical recommendations can be made.

National Category
Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-4126 (URN)10.1371/journal.pone.0101799 (DOI)24999660 (PubMedID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2006–1099Stockholm County Council, 20110338
Note

Publication status in dissertation: Submitted

Funding: The study was supported by The Swedish Council for Working Life Social Research (Forte)(2006–1099, http://www.forte.se/), ALF Grants, County Council of Stockholm (20110338, www.forskningsstod.sll.se) and Swedish Lundbeck foundation (2010, http://www.lundbeck.com/se/om-lundbeck/s​venska-lundbeckstiftelsen).

Available from: 2014-10-14 Created: 2014-10-14 Last updated: 2017-01-17Bibliographically approved

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