The grief ritual of extracting and donating human milk after perinatal loss
Infant; Female; Humans; Infant Mortality; Pregnancy; Perinatal loss; Mothers; Stillbirth; Ceremonial Behavior; Grief; Ambiguous loss; Continuing bonds; Grief rituals; Meaning-making in loss; Milk donation; Milk Banks; Milk Human
Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to extract and donate their human milk to nonprofit milk banks. Through an analysis of 88 women's personal testimonials, collected between 2017 and 2019, I uncover the ritualistic attributes of the extraction and donation process. The bereaved mothers in this study experienced ambiguous loss, comprising the combination of the physical absence and psychological presence of their baby. The process of extracting and donating their milk constitutes a grief ritual, allowing mothers to maintain and reconstruct the continuing bonds with their babies. The present study extends current understandings of organ donation in times of loss, highlighting the unique nature and consequences of the milk donation process through its conceptualization as a grief ritual.
Oreg A
Social Science & Medicine
2020
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).
<a href="http://doi.org/10.1016/j.socscimed.2020.113312" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2020.113312</a>
Mortality in parents after the death of a child
Attitude to Death; Bereavement; Child Mortality; Genetics; Heart Diseases -- Mortality; Human; Life Expectancy; Middle Age; Mortality -- Risk Factors; Parental Attitudes; Peer Group; Public Health; Twins; United States
The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors. • 32% higher rate of mortality in bereaved parents than non-bereaved parents. • Parental mortality effect confirmed in twin sample. • Highest death rates from heart disease in bereaved parents.
Song J; Mailick M R; Greenberg J S; Floyd F J
Social Science & Medicine
2019
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).
<a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2019.112522</a>
How the mass media report social statistics: a case study concerning research on end-of-life decisions
Euthanasia; Ethics; end-of-life care; Mass Media; Assisted dying; Journalism; physician-assisted suicide
http://www.sciencedirect.com/science/article/B6VBF-50BJNTN-4/2/997a42ffdf7abfae6fcc09cbbc034284
The issue of whether it is right to be concerned about the accuracy with which mass media report social scientific research is explored through a detailed case study of media reporting of two surveys of UK doctors' end-of-life decision-making. Data include press releases, emails and field notes taken during periods of media interest supplemented by a collection of print and broadcast media reports. The case study contributes to existing knowledge about the ways in which mass media establish, exaggerate and otherwise distort the meaning of statistical findings. Journalists ignored findings that did not fit into existing media interest in the [`]assisted dying' story and were subject to pressure from interest groups concerned to promote their own interpretations and viewpoints. Rogue statistics mutated as they were set loose from their original research report context and were [`]laundered' as they passed from one media report to another. Yet media accounts of the research, fuelling an already heated public debate about ethical issues in end-of-life care, arguably acted as a conduit for introducing new considerations into this debate, such as the role played by sedation at the end of life, the extent to which euthanasia is practiced outside the law, and the extent of medical opposition to the legalisation of assisted dying. The expectation that accuracy and comprehensiveness should be the sole criteria for judging journalists' reports is, finally, considered to be unrealistic and it is argued that social scientists need to understand and adapt to the conditions under which mass media reporting operates if they are to succeed in introducing the findings of social research into public debates."
Seale C
Social Science & Medicine
2010
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
Masculinity, moralities and being cared for: An exploration of experiences of living and dying in a hospice
Palliative Care; Death; hospice; Australia; identity; dying; father experience; Masculinity; moral practice
http://www.sciencedirect.com/science/article/B6VBF-507BHVC-9/2/87c0e7a37c04eda75f05a7e6f11ab460
Hospices are playing an increasingly important role in end of life care in Australia and internationally and the in-patient hospice experience has not been well documented by social scientists. This paper explores some important facets of the contemporary hospice experience through an examination of the perspectives of 11 male and 9 female Australian in-patients in the last few weeks of their lives. Through a series of qualitative in-depth interviews, we explore their conceptions of death and dying and their experiences of being cared for. The results illustrate a range of important themes including: tensions around what constitutes [`]the good death'; dying and caring as moral practice; and, the centrality of gender identity and relations in shaping experiences of dying and caring. We argue for a sociological approach to death and dying that better elucidates the interplay of identity, morality and relationality at the end of life."
Broom A; Cavenagh J
Social Science & Medicine
2010
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
Coping strategies in parents of children with cancer
PedPal Lit; Adaptation; and a less frequent use of avoidance behaviour and passive reaction pattern; assessed using the Utrecht Coping List. The use of each of seven coping strategies among parents of children with cancer was compared with data from parents of children with no serious or chronic diseases. In addition; Non-U.S. Gov't%X This study examined 395 parents (224 mothers and 171 fathers) of children with cancer in Sweden in terms of coping; nor among parents at various points in time after the child's cancer diagnosis. A more frequent use of active problem-focusing; Psychological Adult Anxiety/etiology Child Cross-Sectional Studies Depression/etiology Family Health HumansNeoplasms Parents/psychology Research Support
2005
Norberg AL; Lindblad F; Boman KK
Social Science & Medicine
2005
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/j.socscimed.2004.06.030" target="_blank" rel="noreferrer">10.1016/j.socscimed.2004.06.030</a>
Pediatric adherence: Perspectives of mothers of children with HIV
PedPal Lit
2005
Wrubel J; Tedlie MJ; Anne RT; Prakke H; Acree M; Folkman S
Social Science & Medicine
2005
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/j.socscimed.2005.04.034" target="_blank" rel="noreferrer">10.1016/j.socscimed.2005.04.034</a>
Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil
PedPal Lit
This study describes and conceptualizes the experiences of stigma in a group of children living with HIV in Sao Paulo, Brazil, and evaluates the impact of access to highly active antiretroviral therapy (HAART) over the social course of AIDS and over the children's experiences of stigma. Through ethnographic research in Sao Paulo from 1999 to 2001, the life trajectories of 50 children ages 1-15 living with or affected by HIV were studied. Data were collected via participant observation and semi-structured informal interviews and analyzed using social theories on illness experience and social inequality. Our results demonstrate that AIDS-related stigma occurs within complex discrimination processes that change as children reach adolescence. We found that structural violence in the forms of poverty, racism, and inequalities in social status, gender, and age fuels children's experiences of stigma. We also describe how access to HAART changes the lived experience of children, reduces stigma, and brings new challenges in AIDS care such as adolescents' sexuality and treatment adherence. Based on these results, we propose structural violence as the framework to study stigma and argue that interventions to reduce stigma that solely target the perception and attitudes toward people living with HIV are limited. In contrast universal access to HAART in Brazil is a powerful intervention that reduces stigma, in that it transforms AIDS from a debilitating and fatal disease to a chronic and manageable one, belongs to a broader mechanism to assure citizens' rights, and reduces social inequalities in access to health care.
2006
Abadia-Barrero CE; Castro A
Social Science & Medicine
2006
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Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2005.07.006" target="_blank" rel="noreferrer">10.1016/j.socscimed.2005.07.006</a>
Negotiating mothering against the odds: Gastrostomy tube feeding, stigma, governmentality and disabled children
PedPal Lit; Nutritional Failure
Using the findings of a small-scale qualitative investigation based on in-depth interviews with mothers attending a tertiary paediatric referral centre in London, this paper explores professional and parental discourses in relation to gastrostomy tube feeding and disabled children. Detailed accounts are given of women's struggles to negotiate their identities, and those of their children, within dominant discourses of mothering and child-centredness. Constructions of feeding practices as coercive conflict with normative expectations of 'good mothering' and the 'idealised autonomous' child. Although notions of 'stigmatised identities' featured in women's accounts of feeding children, both orally and by tube, stigma fails to explain why mothers are rendered culpable within expert discourses. Prevailing theories of stigma and coping are interrogated and judged to be more descriptive than explanatory. Felt stigma is posited as an aspect of governmentality.
2005
Craig GM; Scambler G
Social Science & Medicine
2005
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/j.socscimed.2005.07.007" target="_blank" rel="noreferrer">10.1016/j.socscimed.2005.07.007</a>
Parent communication and child pain and distress during painful pediatric cancer treatments
PedPal Lit
Children with cancer often consider treatment procedures to be more traumatic and painful than cancer itself. Previous research indicates that parents' behavior before and during painful medical procedures influences children's distress level. Understanding parents' naturally occurring communication patterns is essential to identifying families in need of an intervention to enhance coping and emotional well-being. Using the concept of definition of the situation from a symbolic interactionism theoretical framework, this study developed a typology of parent communication patterns and tested relationships between those patterns and children's responses to potentially painful treatment procedures. Analyses are based on video-recorded observations of 31 children and their primary parents (individuals functioning in a parenting role and serving as the primary familial caregivers during the observed procedure) in the USA during clinic visits for potentially painful pediatric oncology treatments. Four communication patterns emerged: normalizing, invalidating, supportive, and distancing. The most common communication patterns differed by clinic visit phase: normalizing during pre-procedure, supportive during procedure, and both distancing and supportive during post-procedure. Parents' communication also varied by procedure type. Supportive communication was most common during lumbar punctures; normalizing and distancing communication were most common during port starts. Six children (19.4%) experienced invalidation during at least one clinic visit phase. Analyses indicated that invalidated children experienced significantly more pain and distress than children whose parents used other communication patterns. This typology provides a theoretical approach to understanding previous research and offers a framework for the continuing investigation of the influence of parents' communication during potentially painful pediatric oncology procedures.
2006
Cline RJ; Harper FW; Penner LA; Peterson AM; Taub JW; Albrecht TL
Social Science & Medicine
2006
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Journal Article
Place of death: preferences among cancer patients and their carers
Female; Humans; Male; Terminally Ill; Cohort Studies; Great Britain; Adult; Aged; Middle Aged; Attitude to Death; Longitudinal Studies; Patient Satisfaction; 80 and over; Non-U.S. Gov't; Research Support; Caregivers/psychology; Comparative Study; location of death; Neoplasms/mortality/therapy; Hospice Care/standards/trends
The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2-4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.
2004
Thomas C; Morris SM; Clark D
Social Science & Medicine
2004
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Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2003.09.005" target="_blank" rel="noreferrer">10.1016/j.socscimed.2003.09.005</a>
I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain
Female; Humans; Adult; Attitude to Health; Middle Aged; Chronic disease; Feminism; Narration; Pain/psychology
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was conducted with in-depth interviews including a purposeful sampling of 10 women of varying ages and backgrounds with chronic muscular pain. The women described themselves in various ways as 'strong', and expressed their disgust regarding talk of illness of other women with similar pain. The material was interpreted within a feminist frame of reference, inspired by narrative theory and discourse analysis. We read the women's descriptions of their own (positive) strength and the (negative) illness talk of others as a moral plot and argumentation, appealing to a public audience of health personnel, the general public, and the interviewer: As a plot, their stories attempt to cope with psychological and alternative explanations of the causes of their pain. As performance, their stories attempt to cope with the scepticism and distrust they report having been met with. Finally, as arguments, their stories attempt to convince us about the credibility of their pain as real and somatic rather than imagined or psychological. In several ways, the women negotiated a picture of themselves that fits with normative, biomedical expectations of what illness is and how it should be performed or lived out in 'storied form' according to a gendered work of credibility as woman and as ill. Thus, their descriptions appear not merely in terms of individual behaviour, but also as organized by medical discourses of gender and diseases. Behind their stories, we hear whispered accounts relating to the medical narrative about hysteria; rejections of the stereotype medical discourse of the crazy, lazy, illness-fixed or weak woman.
2004
Werner A; Isaksen LW; Malterud K
Social Science & Medicine
2004
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Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2003.12.001" target="_blank" rel="noreferrer">10.1016/j.socscimed.2003.12.001</a>
Denial of impending death: a discourse analysis of the palliative care literature
Humans; Palliative Care; Canada; Attitude to Death; Denial (Psychology)
Terminally ill patients and their families are often referred to as being "in denial" of impending death. This study uses the qualitative method of discourse analysis to investigate the usage of the term "denial" in the contemporary hospice and palliative care literature. A Medline search (1970-2001) was performed combining the text words "deny" and "denial" with the subject headings "terminal care", "palliative care" and "hospice care," and restricted to English articles discussing death denial in adults. The 30 articles were analysed using a constant comparison technique and emerging themes regarding the meaning and usage of the words "deny" and "denial" identified. This paper focusses on the theme of denial as an individual psychological process. Three dominant subthemes were distinguished: denial as an unconscious "defence mechanism", denial as "healthy" and denial as temporary. The analysis focusses on the intertextuality of these themes with each other and with previous texts on the denial of death. Elements of the psychoanalytic definition of denial as an unconscious defence mechanism are retained in the literature but are interwoven with new themes on patient choice. The result is an overall discourse that is conflictual and at times self-contradictory but overall consistent with the biomedical model of illness. I suggest that the representation of death denial elaborated in these articles may be related to a larger discourse on dying in contemporary Western society, which both invites patients to participate in the planning of their death and labels those who do not comply.
2004
Zimmermann C
Social Science & Medicine
2004
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Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2004.02.012" target="_blank" rel="noreferrer">10.1016/j.socscimed.2004.02.012</a>
Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space
Female; Hospitalization; Humans; Aged; Self Concept; Patient-Centered Care; Cost-Benefit Analysis; Social Environment; Geography; Psychology; Non-U.S. Gov't; Research Support; Caregivers/psychology; Home Nursing/economics/psychology; Delivery of Health Care/trends; Social; Social Change; Social Responsibility; Women/psychology
Changes in health care service delivery have resulted in the transfer of care from formal spaces such as hospitals and institutions towards informal settings such as home. Due to the degree of this transfer, it is increasingly important for geographers to explore the experience and meaning of these changing geographies of care in order to reveal and understand the impact and effect on particular individuals and places. Recognizing that the home environment not only designates a dwelling but also represents a multitude of meanings (such as personal identity, security and privacy) that likely vary according to class, ethnicity and family size (among other socio-demographic variables), it presents a complex site for study. This paper suggests research directions to further understand the role of caregiving in contributing to the experience and meaning of the home environment by informal caregivers, the majority of which are women. Using a political economy approach, this paper first reviews the reorganization of health care services and discusses how this is reshaping the experience of informal caregivers at home. A review of the place identity literature contextualizes the specific discussion of the literature on the meaning of home, both of which are then critically examined. Next, the concept of therapeutic landscapes is discussed as an idealized framework to explore the health-promoting properties of home on informal caregivers. Questions for research are outlined before conclusions highlight how research on home space can allow a better understanding of the impact and effect of caregiving on family caregivers and the places where they live. Such research can inform the changes and trends in health care service policy.
2002
Williams A
Social Science & Medicine
2002
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Journal Article
<a href="http://doi.org/10.1016/s0277-9536(01)00209-x" target="_blank" rel="noreferrer">10.1016/s0277-9536(01)00209-x</a>
Parenting in a crisis: Conceptualising mothers of children with cancer
mothers
2002
Young B; Dixon-Woods M; Findlay M; Heney D
Social Science & Medicine
2002
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(01)00318-5" target="_blank" rel="noreferrer">10.1016/s0277-9536(01)00318-5</a>
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
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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>
Discovering' chronic illness: Using grounded theory
Research; grounded theory approach; Paper
This paper focuses on using the grounded theory method to study social psychological themes which cut across diverse chronic illnesses. The grounded theory method is presented as a method having both phenomenological and positivistic roots, which leads to confusion and misinterpretations of the method. A social constructionist version and application of grounded theory are introduced after brief overviews of the method and of the debates it has engendered are provided. Next, phases in developing concepts and theoretical frameworks through using the grounded theory approach are discussed. These phases include: (1) developing and refining the research and data collection questions, (2) raising terms to concepts, (3) asking more conceptual questions on a generic level and (4) making further discoveries and clarifying concepts through writing and rewriting. Throughout the discussion, examples and illustrations are derived from two recent papers, 'Disclosing Illness' and "Struggling for a Self; identity Levels of the Chronically Ill.' Last, the merits of the method for theoretical development are discussed.
1990
Charmaz K
Social Science & Medicine
1990
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Journal Article
<a href="http://doi.org/10.1016/0277-9536(90)90256-r" target="_blank" rel="noreferrer">10.1016/0277-9536(90)90256-r</a>
Physician uncertainty and the art of persuasion
Humans; Clinical Competence; Decision Support Techniques; decision making; Persuasive Communication; Physicians/psychology
Incomplete information is a chronic feature of medica markets. Much attention has focused on information asymmetries between physicians and their patients. In contrast, physician uncertainty has received far less attention. This is a significant omission. Physician uncertainty may be an even more important reason than consumer uncertainty for the high cost of health care. This paper reviews and evaluates major approaches for managing physician uncertainty. We argue that quantitative approaches alone, such as scientific advancement and the application of decision analysis to clinical reasoning, are insufficient for dealing with uncertainty. Qualitative approaches, such as forging consensus through expert panels, and teaching physicians to accept and cope with uncertainty, will play a valuable role in promoting more effective clinical decision-making under conditions of uncertainty. The current tensions between those who would eradicate physician uncertainty through quantitative approaches and those who favor qualitative methods has parallels in many other fields, including economics and mathematics. These tensions are unfortunate, since the most promising initiative to promote better clinical decision-making will likely need to draw upon both approaches. The recent initiative to implement medical practice guidelines is one example of a broad-based approach to improve clinical decision-making. Guidelines draw upon available scientific evidence, but typically involve consensus-building as well. They seek to persuade and educate physicians about appropriate treatments, without mandating changes in physician treatment patterns. Given the persistent uncertainties physicians will undoubtedly confront regarding appropriate clinical decision-making, this flexible approach may be the best way to mitigate market failures resulting from inappropriate clinical decisions.(ABSTRACT TRUNCATED AT 250 WORDS)
1993
Rizzo JA
Social Science & Medicine
1993
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Journal Article
<a href="http://doi.org/10.1016/0277-9536(93)90179-8" target="_blank" rel="noreferrer">10.1016/0277-9536(93)90179-8</a>
The legitimacy of grieving: The partner's experience at miscarriage
1997
Puddifoot JE; Johnson MP
Social Science & Medicine
1997
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(96)00424-8" target="_blank" rel="noreferrer">10.1016/s0277-9536(96)00424-8</a>
Positive psychological states and coping with severe stress
Humans; Male; Death; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; bereavement; Caregivers/psychology; Models; Psychological; Stress; Acquired Immunodeficiency Syndrome/psychology/therapy
Providing care to a spouse or partner who is dying and then losing that person are among the most stressful of human experiences. A longitudinal study of the caregiving partners of men with AIDS showed that in addition to intense negative psychological states, these men also experienced positive psychological state states throughout caregiving and bereavement. The co-occurrence of positive and negative psychological states in the midst of enduring and profoundly stressful circumstances has important implications for our understanding of the coping process. Coping theory had traditionally focused on the management of distress. This article describes coping processes that are associated with positive psychological states in the context of intense distress and discusses the theoretical implications of positive psychological states in the coping process.
1997
Folkman S
Social Science & Medicine
1997
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Journal Article
<a href="http://doi.org/10.1016/s0277-9536(97)00040-3" target="_blank" rel="noreferrer">10.1016/s0277-9536(97)00040-3</a>
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Cote-Arsenault D; Denney-Koelsch E
Social Science & Medicine
2016
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DOI: 10.1016/j.socscimed.2016.02.033