Bereaved parents' experience of research participation.
Child; Female; Humans; infant; Male; Adult; Follow-Up Studies; Middle Aged; Attitude; Longitudinal Studies; Research; Regression Analysis; Ethics; Registries; adolescent; Preschool; Empirical Approach; Psychological; bereavement; infant; Newborn; Parents/psychology; Biomedical and Behavioral Research; Multi-site Ethics; Norway; Interview; Accidents/psychology; Medical/methods; Research Subjects/psychology; Sociology; Sudden Infant Death; Suicide/psychology
Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and traumatised populations experience research participation, and they voice their recommendations for future research. The data are from a nationwide three-phase study in Norway among parents who had lost their child by suicide, SIDS, and accidents between July 1, 1997 and December 31, 1998. Whereas the first phase reported quantitative results of perceived psychosocial health and focused on offered and ideal support (N=262), the second phase investigated the same issues through in-depth interviews of a sub sample (N=69). Phase three, reported here, included the responses of 64 parents to a short questionnaire evaluating research participation in the two previous phases. The results show that 100% of the parents experienced participation as "positive"/"very positive", and none regretted participating. They linked the positive experiences to being allowed to tell their complete story, the format of the interview, and a hope that they might help others. Apparently, processes of meaning reconstruction and increased awareness of the bereavement process were facilitated by the interviews. However, three-quarters of the interviewees reported that it was to a greater or lesser degree painful to talk about the traumatic loss. Regression analysis showed that being a woman and high levels of psychic distress were the most important predictors of a painful interview experience. In order to protect bereaved and vulnerable populations from harm, already existing ethical codes must be strictly applied, and the researchers must listen respectfully to recommendations from bereaved parents.
2004
Dyregrov K
Social Science & Medicine
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0277-9536(03)00205-3" target="_blank" rel="noreferrer">10.1016/s0277-9536(03)00205-3</a>
Trauma and growth in Canadian carers
Female; Humans; Male; Family; Adult; Canada; Questionnaires; Aged; Middle Aged; Attitude; Internal-External Control; Non-U.S. Gov't; Research Support; bereavement; Caregivers/psychology; Psychological; Stress; Depression/psychology; Sociology; Acquired Immunodeficiency Syndrome/psychology
The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder. Despite this, 81.8% had scores high enough to be indicative of post-traumatic growth. This study provides a portrait of bereaved HIV carers in Canada and both the positive and negative realities associated with that situation.
2003
Cadell S
AIDS Care
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/09540120310001595122" target="_blank" rel="noreferrer">10.1080/09540120310001595122</a>
Intensive care unit palliative medicine: some issues-part II.
Humans; Resuscitation Orders; Medical; DNAR; Sociology; Palliative Care/og [Organization & Administration]; Palliative Care/ec [Economics]; Health Care Rationing/og [Organization & Administration]; Intensive Care Units/og [Organization & Administration]; Health Care Rationing/ec [Economics]; Intensive Care Units/ec [Economics]
Enck RE
The American Journal Of Hospice & Palliative Care
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049909111399408" target="_blank" rel="noreferrer">10.1177/1049909111399408</a>
Parental Involvement In Neonatal Critical Care Decision-making.
Sociology; Life; Interrogatives; Consultation; Social Sciences; Biomedical; Decision Making; Shared Decision; Recommendations; Medical Authority; Communication; Conversation; End Of Life Care; Public; Public Environmental & Occupational Health; End; Resistance; Training; Cooperation; Communication; Palliative Care; Decision Making; Intensive Care; Participation; Ethics; Medicine; Physicians; Parents; Conversational Analysis; Decisions; Infant; Palliative Treatment; Parenting; Infants (newborn); Decision Making; Parent And Child; Analysis
Conversation Analysis; Decision-making; End Of Life; Ethics; Neonatal; Parental Involvement
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed. Two distinct communicative approaches to decision-making were used by doctors: 'making recommendations' and 'providing options'. Different trajectories for parental involvement in decision-making were afforded by each design, as well as differences in terms of the alignments, or conflicts, between doctors and parents. 'Making recommendations' led to misalignment and reduced opportunities for questions and collaboration; 'providing options' led to an aligned approach with opportunities for questions and fuller participation in the decision-making process. The findings are discussed in the context of clinical uncertainty, moral responsibility and the implications for medical communication training and guidance.
Shaw C; Stokoe E; Gallagher K; Aladangady N; Marlow N
Sociology Of Health & Illness
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1111/1467-9566.12455