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      The ethics of doing nothing. Suicide-bereavement and research: ethical and methodological considerations

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          Abstract

          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.

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          Most cited references 19

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          Hospitalization for mental illness among parents after the death of a child.

          The loss of a child is considered one of the most stressful events in the life of a parent. We hypothesized that parental bereavement increases the risk of hospital admission for a psychiatric disorder, especially for affective disorders. We studied a cohort of 1,082,503 persons identified from national registers in Denmark who were born between 1952 and 1999 and had at least one child under 18 years of age during the follow-up period, from 1970 to 1999. Parents who lost a child during follow-up were categorized as "bereaved" from the date of death of the child. As compared with parents who did not lose a child, parents who lost a child had an overall relative risk of a first psychiatric hospitalization for any disorder of 1.67 (95 percent confidence interval, 1.53 to 1.83). Bereaved mothers had a higher relative risk of being hospitalized for any psychiatric disorder than bereaved fathers (relative risks, 1.78 [95 percent confidence interval, 1.60 to 1.98] and 1.38 [95 percent confidence interval, 1.17 to 1.63], respectively; P value for interaction, 0.01). The relative risks of hospitalization specifically for affective disorders were 1.91 (95 percent confidence interval, 1.59 to 2.30) and 1.61 (95 percent confidence interval, 1.15 to 2.27) for bereaved mothers and fathers, respectively. Among mothers, the relative risk of being hospitalized for any psychiatric disorder was highest during the first year after the death of the child but remained significantly elevated five years or more after the death. The risk of psychiatric hospitalization was increased among parents, especially mothers, who lost a child. Copyright 2005 Massachusetts Medical Society.
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            Talking about death with children who have severe malignant disease.

            One of the questions faced by the parents of a child who is terminally ill with a malignant disease is whether or not they should talk about death with their child. In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Among 561 eligible parents, 449 answered a questionnaire, and 429 stated whether or not they had talked about death with their child. None of the 147 parents who talked with their child about death regretted it. In contrast, 69 of 258 parents (27 percent) who did not talk with their child about death regretted not having done so. Parents who sensed that their child was aware of his or her imminent death were more likely to regret not having talked about it (47 percent, as compared with 13 percent of parents who did not sense this awareness in their child; relative risk, 3.7; 95 percent confidence interval, 2.3 to 6.0). The same variable was related to having talked about death (50 percent vs. 13 percent; relative risk, 3.8; 95 percent confidence interval, 2.6 to 5.6), as was being religious (42 percent vs. 25 percent; relative risk, 1.7; 95 percent confidence interval, 1.2 to 2.3). The child's age was related to both having talked about death and the parents' regretting not having talked about it. Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death. Copyright 2004 Massachusetts Medical Society
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              Research participants telling the truth about their lives: the ethics of asking and not asking about abuse.

              Most discussions of the ethics of self-report research on abuse and interpersonal violence focus on the risks of asking participants about their experiences. An important element of the cost-benefit analysis--the costs of not asking about child abuse--has largely been ignored. Furthermore, little research has been conducted on the costs and benefits of child abuse research, leaving researchers to make decisions based on individual beliefs about such issues as the prevalence of abuse, the likelihood of disclosure, the effects of child abuse, and the ability of abuse survivors to give informed consent. The authors suggest that these beliefs tend to overemphasize survivors' vulnerability and ignore the costs of avoiding asking about abuse. In fact, these beliefs may reinforce societal avoidance of abuse and ultimately harm abuse survivors. 2006 APA, all rights reserved
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                Author and article information

                Journal
                Psychol Med
                Psychol Med
                PSM
                Psychological Medicine
                Cambridge University Press (Cambridge, UK )
                0033-2917
                1469-8978
                December 2014
                19 July 2013
                : 44
                : 16
                : 3409-3420
                Affiliations
                [1 ]Stockholm Centre for Psychiatric Research and Education, Department of Clinical Neuroscience, Karolinska Institutet , Sweden
                [2 ]Division of Clinical Cancer Epidemiology, Department of Oncology–Pathology, Karolinska Institutet , Stockholm, Sweden
                [3 ]Division of Clinical Cancer Epidemiology, Department of Oncology, Institute of Clinical Sciences , Sahlgrenska Academy, Gothenburg, Sweden
                [4 ]The Center for Crisis Psychology, Bergen, Norway
                [5 ]The Norwegian Institute of Public Health , Oslo, Norway
                Author notes
                [* ]Address for correspondence: P. Omerov, Department of Clinical Neuroscience, Karolinska Institute , Z5:U1, Karolinska University Hospital, 17176 Stockholm, Sweden. (Email: Pernilla.Omerov@ 123456ki.se )
                Article
                S0033291713001670 00167
                10.1017/S0033291713001670
                4255316
                23867073
                © Cambridge University Press 2013

                The online version of this article is published within an Open Access environment subject to the conditions of the Creative Commons Attribution licence < http://creativecommons.org/licenses/by/3.0/.

                Page count
                Figures: 1, Tables: 3, References: 27, Pages: 12
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                Categories
                Original Articles

                Clinical Psychology & Psychiatry

                bereavement, epidemiologic methods, ethics, research design, suicide

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