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"I Would Do It All Over Again": Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis
Abstract
Parents, after learning of a life-limiting fetal condition (LLFC), experience emotional distress and must consider options that impact the remainder of the pregnancy, their future lives, and family members. For those who continue, little is known about their long-term presence or absence of regret about their choice, the reasons for this feeling, or its impact on their life. The aim of this research was to examine the concept of decision regret in parents who opted to continue a pregnancy affected by an LLFC. The contextual factors, conditions, and consequences surrounding the presence or absence of regret were analyzed. Data were retrieved from a cross-sectional study using the Quality of Perinatal Palliative Care and Parental Satisfaction Instrument. Participants were parents (N = 405) who experienced a life-limiting prenatal diagnosis and opted to continue their pregnancy. Secondary data analysis examined qualitative responses (121/402) to an item addressing regret. Dimensional analysis was used to examine data, identifying context, conditions, and consequences associated with the presence or absence of regret. Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.
... Parents continuing pregnancy believe in the value of life [11,[13][14][15]. Many of them feel judged because of their decision [13] and fear substandard care [9,12]. ...
... Many of them feel judged because of their decision [13] and fear substandard care [9,12]. They recognize their baby as a person [9,[14][15][16][17][18][19], call him or her by name [15,[17][18][19], and expect providers to show respect [12][13][14][19][20][21]. Parents hope to meet their child alive [14,15,22] and try to find meaning in his or her brief life [15,17,18]. ...
... Many of them feel judged because of their decision [13] and fear substandard care [9,12]. They recognize their baby as a person [9,[14][15][16][17][18][19], call him or her by name [15,[17][18][19], and expect providers to show respect [12][13][14][19][20][21]. Parents hope to meet their child alive [14,15,22] and try to find meaning in his or her brief life [15,17,18]. ...
In Germany, research on experiences and care pathways of parents continuing pregnancy after a life-limiting fetal diagnosis is scarce. There are several recommendations but few structured programs. We aimed to explore experiences and needs of parents, reconstruct their care pathways, and identify requirements for a perinatal palliative care program. We conducted semi-structured interviews with 11 mothers and 9 fathers and analyzed data using the Saldaña’s Coding Method. Codes were organized in templates to reconstruct care pathways. Pathways started with a suspicious finding prompting a referral to prenatal diagnostics. Parents experienced severe emotional distress during prenatal diagnostics due to scarce information, insensitiveness, and a perceived pressure towards abortion. As a result, they overlooked referrals to psychosocial counseling, generating a care gap. Most parents reached the decision to continue pregnancy without professional support. They then chose a trusted midwife or gynecologist as main caregiver during pregnancy. There were no regular referrals to palliative care, which mainly became relevant when the child survived. Our data indicate that a perinatal palliative care program requires early and comprehensive information, sensitivity, and a non-directive approach. Already existing support services need to be identified and connected through structured pathways, with a particular focus on midwives.
... This is essential in order to be able to keep all of the parents' needs (both medical and non-medical) in mind throughout the entire process. In these high-stress situations, parents should ideally not have to make far-reaching decisions under time pressure and without the offer of psychological support [13]. ...
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model “SORROWFUL” is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.
... Los días anteriores y posteriores al fallecimiento tienen un peso especial 4. La voz de los pacientes y sus familias Aunque estas familias atraviesan momentos dolorosos, las madres y los padres valoran positivamente la posibilidad de haber conocido, querido y acompañado a sus hijos en la gran mayoría de los casos (Kuebelbeck, 2011;Wool, 2018). ...
Los cuidados paliativos perinatales tienen el objetivo de prevenir y tratar el sufrimiento físico, psicológico, social y espiritual de fetos y recién nacidos con enfermedades limitantes o amenazantes de la vida, y de sus familias, buscando promover la mejor calidad de vida posible. Se trata de una atención interdisciplinaria que comienza en el momento del diagnóstico (muchas veces durante el embarazo), y se prolonga hasta el fallecimiento y el duelo. Aunque las vivencias de estas familias son dolorosas, la mayoría de los padres valoran positivamente la posibilidad de haber querido, conocido y cuidado de sus hijos.
... Nearing the day of delivery, parents may worry about future regrets in choosing comfort-focused care, and want time-limited trials of therapy until the baby's diagnosis is confirmed. It is important to validate that concerns about regret can inform the goals of care and to acknowledge that allowing time to pass might reduce parental decision regret (26). There is also the possibility that at birth, the baby's presentation may not match the prenatal diagnosis thereby suggesting a different prognosis. ...
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.
... Eltern, deren Kind keine lebenserhaltende Therapie bekommen soll, sind darauf vorzubereiten, dass ihr Kind dennoch lebend zur Welt kommen kann und für eine gewisse Zeit Lebenszeichen haben wird. Diese Zeit, in der sich Eltern und Kind gleichzeitig gegenseitig kennenlernen und voneinander verabschieden können, ist für die Verarbeitung der Geschehnisse und das Andenken des Kindes in der Familie von besonderem Wert [94,95]. Die Gespräche zur Klärung von Therapiezielen, zur Geburts-und zur (vorausschauenden) Behandlungsplanung ("advance care planning"), über das Sterben des Kindes, seinen Tod und die Zeit danach haben in vielen Fällen für Eltern lebenslang prägende Bedeutung [12]. ...
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... Clinicians from many disciplines play an integral part in supporting families by providing compassionate, evidencebased care and can offer information and services that allow families to make the most of the time with their neonate. Data show that women who opt to continue a pregnancy with an LLC appreciate opportunities to emotionally adjust and report having no regrets about their decision (9,10). A variety of interventions, including anticipatory guidance, prenatal consults, early and continuous bereavement support, and coordination of care allow families to begin the difficult but important process of adjusting to the implications of an LLC (11,12). ...
The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.
... When a family knows that their wishes are heard, it validates their parental role (67,74). Families find joy in the opportunities to love, parent, and make memories with their baby even before the delivery (75). These experiences are chances to celebrate their child's life and to begin to form an enduring memory and legacy. ...
Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made.
Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care.
Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.
... 39 More than 90% experienced the life of their children as positive for the children and their families 14 and did not regret their decision to continue the pregnancy. 42 Since continuity of care could prevent parents from feeling "emotionally exhausted," 39,41 the participants proposed to strengthen the role of midwives. A continuous support by the same midwife was seen as crucial to integrate these special situations into standard processes of delivery and afterbirth care. ...
Background::
A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%-85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Perinatal Palliative Care programs are missing in many European countries. In Germany, parents have the right to free psychosocial support from pregnancy counseling services after the prenatal diagnosis of a life-limiting disease.
Aim::
We aimed to investigate whether German professional pregnancy counselors perceive the need for structured Perinatal Palliative Care and if so, how it should be conceived.
Design::
This is a qualitative interview study with purposeful sampling. The interviews were analyzed with the coding method of Saldaña.
Setting/participants::
A total of 10 professionals from three different pregnancy counseling services participated in the study.
Results::
The main topics raised by the professionals were as follows: (1) counseling and parental support during the decision-making process; (2) fragmented or missing support infrastructure for parents; and (3) challenges, hesitations, and barriers, particularly from the different stakeholders, regarding a Perinatal Palliative Care framework. They highlighted the importance of the integration of Perinatal Palliative Care in existing structures, a multi-professional approach, continuous coordination of care and education for all healthcare providers involved.
Conclusion::
A structured Perinatal Palliative Care program is considered as necessary by the pregnancy counselors. Future research should focus on (1) needs reported by concerned parents; (2) attitude and role of all healthcare providers involved; (3) strategies to include stakeholders in the development of Perinatal Palliative Care networks; and (4) outcome parameters for evaluation of Perinatal Palliative Care frameworks.
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Background
: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature.
Objective
: We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann.
Study Design
: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families’ birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes.
Results
: Of 187 PPC consults, delivery events matched families’ plans and clinicians’ expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p = 0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p = 0.02), but this was associated with mode of delivery and not choice of interventions.
Conclusions
: Most families’ perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant’s family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later).
To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Resumen
Los cuidados paliativos perinatales son una forma de atención clínica diseñada para anticipar, prevenir y tratar el sufrimiento físico, psicológico, social y espiritual de los fetos y recién nacidos con enfermedades limitantes o amenazantes de la vida, que se extiende a sus familias. Se trata de una atención interdisciplinaria y coordinada que busca ofrecer la mejor calidad de vida posible, desde el diagnóstico (muchas veces intraútero) hasta el fallecimiento y el duelo (días, meses o años después).
Los cuidados paliativos perinatales constituyen una prestación de salud básica dirigida a una población particularmente vulnerable. Para garantizar el acceso a una atención de calidad es esencial desarrollar programas estructurados y protocolos clínicos en todos los hospitales terciarios que atienden patología obstétrica y neonatal de alta complejidad. Se requiere también una formación básica de todos los profesionales implicados.
Perinatal palliative and hospice care (hereafter, perinatal hospice) is a novel approach to addressing a family’s varied needs following an adverse in utero diagnosis. Christian defenses of perinatal hospice tend to focus on its role as an ethical alternative to abortion. Although these analyses are important, they do not provide adequate grounds to characterize the wide range of goods realized through this compassionate form of care. This essay draws on an analysis of the Christian virtue of humility to highlight the ways a Christian virtue-based defense of perinatal hospice can account for these goods. I argue that humility can play an important facilitating role in helping Christian physicians to meet the needs of families in profoundly difficult circumstances.
Background:
Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child.
Purpose:
This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community.* METHODS/SEARCH STRATEGY:: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia.
Implications for practice:
Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families.
Implications for research:
Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.
After receiving a life-limiting prenatal diagnosis, parents typically experience a swirl of emotions and need to make significant decisions about the remainder of the pregnancy and about their baby’s care after birth. Many parents find purpose in parenting their baby before as well as after birth, imbuing their baby’s life with meaning and creating memories to sustain them later. Parents generally need significant support from health professionals and others with understanding the diagnosis and prognosis, to learn what treatment options there are and the implications of these choices, and to provide direct patient and family-centered care. Resources are gradually becoming more widely available for supporting parents continuing their pregnancies with a life-limiting prenatal diagnosis.
Perinatal palliative care is a growing field that emerged out of the need to provide better care for families facing the devastating experience of a life-limiting fetal condition. Like other palliative care, it requires an interdisciplinary team approach, connecting all the providers who care for these families from obstetrics, genetic counseling, neonatology, palliative care, nursing, and any other needed specialists. It need not to be limited to those families faced with the most severe fetal conditions but can benefit those with uncertain diagnoses or prognoses who may have a complex course. Having a care coordinator can help facilitate the parents’ information-gathering, decision-making, parenting, and memory-making with the ultimate goal of parents feeling supported, their needs met, and ultimately having no regrets. This chapter sets the stage for the rest of the book.
Dieses Kapitel beschäftigt sich mit folgenden Aspekten der perinatalen Palliativversorgung: vorgeburtliche Palliativberatung, Planung einer palliativen Geburt und Palliativversorgung von Neugeborenen im Geburtsraum. Es werden Ziele, konzeptionelle Grundlagen und klinisch relevante Empfehlungen für eine multiprofessionelle und interdisziplinäre Palliativberatung nach vorgeburtlicher Diagnose einer lebensverkürzenden Erkrankung dargestellt. Entscheiden sich betroffene Eltern nach ausführlicher Beratung für eine Fortführung der Schwangerschaft, stehen die psychosoziale Begleitung der Betroffenen und die medizinische Betreuung der Schwangeren bis zur Geburt im Vordergrund. Zudem sollte die Zeit genutzt werden, die palliative Geburt des Kindes entsprechend der Wünsche der Eltern vorzubereiten. Zu diesen Aspekten erhalten Sie wertvolle praktische Hinweise. Zuletzt werden klinisch relevante Hintergrundinformationen zur primären Palliativversorgung von Neugeborenen im Geburtsraum gegeben.
Fifty years of debate have strengthened Germain Grisez’s 1965 interpretation of St. Thomas Aquinas’s famous article on the natural law in Summa theologiae I-II.94.2. Revisiting Grisez’s argument in light of these developments reveals that his “gerundive interpretation” of the first principle of practical reason is not only Thomistic, but essentially Aquinas’s interpretation.
Purpose of review:
A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim of this article is to review the most recent and relevant literature regarding neonatal palliative care (NPC).
Recent findings:
A variety of perinatal and NPC programs are described, but most programs focus exclusively on end-of-life care. Moreover, there is a great need to standardize practices and obtain follow-up quality measures.Guidelines to address infants' basic needs, to achieve a state of comfort, are proposed. A multidisciplinary team addressing the infants' medical and nonmedical needs, parental grieving process, and providers' distress is recommended.
Summary:
NPC is a unique multidisciplinary approach for the care of newborns affected by life-limiting or complex medical conditions with uncertain prognosis. Standardized guidelines should be implemented with the goal of achieving a state of comfort for newborns throughout the course of illness. Further studies are warranted to assess whether NPC effectively promotes newborns' comfort and parents and providers' satisfaction.
Background:
People often face difficult decisions about their health and may later regret the choice that they made. However, little is known about the extent of decision regret in health care or its predictors. We systematically reviewed evidence about the extent of decision regret and its risk factors among individuals making health decisions.
Methods:
The data sources were Medline, Embase, and reverse citation searches in Google Scholar and Web of Science. Studies using the Decision Regret Scale (DRS) to measure decision regret among individuals making nonhypothetical health decisions were included. There were no restrictions on study design, setting, or language. We extracted characteristics of included studies, measures of central tendency for DRS scores (0 = no regret, 100 = high regret), and all risk factors from published analyses. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. A narrative synthesis was performed owing to the heterogeneity of studies.
Results:
The initial search yielded 372 unique titles, and 59 studies were included. The overall mean DRS score across studies was 16.5, and the median of the mean scores was 14.3 (standard deviation range = 2.2-34.5) (n = 44 studies). The risk factors most frequently reported to be associated with decision regret in multivariate analyses included higher decisional conflict, lower satisfaction with the decision, adverse physical health outcomes, and greater anxiety levels.
Conclusions:
The extent of decision regret as assessed with the DRS in nonhypothetical health decisions was often low but reached high levels for some decisions. Several risk factors related to the decision-making process significantly predicted decision regret. Additional research into the psychometrics of the DRS and the relevance of scores for clinicians and patients would increase the validity of decision regret as a patient-reported outcome.
: Twenty women who attended the author's natural childbirth classes between 1968 and 1974 were the informants in this study of long-term memories of their first childbirths. The data from each informant consisted of 1) a labor and birth questionnaire, including an open-ended account of her labor, written shortly after her baby was born; 2) a similar questionnaire and account written in 1988 and 1989; and 3) a transcribed interview during which her memories and perceptions were discussed and any discrepancies between the questionnaires were explored. The questionnaires were compared for consistency of recall, and the interviews consulted for further clarification. Specific memories were excerpted, compared, classified, tabulated, and summarized. Findings were that, years later, women's memories are generally accurate, and many are strikingly vivid, especially of onset of labor; rupture of the membranes; arrival at the hospital; actions of doctors, nurses, and partners: particular interventions; the birth; and first contact with the baby. Most memory lapses or confusion were minor. Evidence of a halo effect was observed as well. (BIRTH 19:2 June, 1992)
Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by health care providers. This qualitative descriptive study sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services, and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. We interviewed 2 women and 3 couples during pregnancy or just after birth, using open ended questions. Audiotaped responses were analyzed by two investigators. Two dimensions and six themes emerged. In the dimension of Personal Pregnancy Experience, "Grieving Multiple Losses" elucidates that parents grieve the loss of their normal pregnancy, healthy baby and future parenting. "Arrested Parenting" describes their sudden interruption in the normal process of becoming a parent. The theme "My Baby is a Person" reflects parents' unanimous desire to honor and legitimize the humanity of their unborn baby. In the dimension of Interactions of Others, three themes were found. "Fragmented Health Care" describes parent's disjointed and distant encounters with multiple providers. "Disconnected Family and Friends" describes the lack of understanding of what the families were experiencing. "Utterly Alone," which crosses both dimensions, expresses how the parents' sense of social isolation adds to their personal sense of loss and loneliness. Recommendations are made for palliative care's role in respecting and validating the experience of parents living through a doomed pregnancy.
It is difficult to hear the voices of women describing their experiences of perinatal health care in the United States. This article reports results from interviews with 30 women about their experience of pregnancy termination for fetal anomaly (TFA) and their encounters with the medical system during the diagnosis through the aftermath of termination process. The ways researchers inadvertently silence women's voices are analyzed. Themes emerged from the interviews, including the role of preparedness, access and barriers to care, and the importance of empathic compassion by the provider. Additionally, women give relatively unprocessed advice and feedback to the varied disciplines of the medical care team.
As patients become more involved in health care decisions, there may be greater opportunity for decision regret. The authors could not find a validated, reliable tool for measuring regret after health care decisions.
A 5-item scale was administered to 4 patient groups making different health care decisions. Convergent validity was determined by examining the scale's correlation with satisfaction measures, decisional conflict, and health outcome measures.
The scale showed good internal consistency (Cronbach's alpha = 0.81 to 0.92). It correlated strongly with decision satisfaction (r = -0.40 to -0.60), decisional conflict (r = 0.31 to 0.52), and overall rated quality of life (r = -0.25 to -0.27). Groups differing on feelings about a decision also differed on rated regret: F(2, 190) = 31.1, P < 0.001. Regret was greater among those who changed their decisions than those who did not, t(175) = 16.11, P < 0.001.
The scale is a useful indicator of health care decision regret at a given point in time.
We examined women's long-term psychological well-being after termination of pregnancy (TOP) for fetal anomaly in order to identify risk factors for psychological morbidity.
A cross-sectional study was performed in 254 women, 2 to 7 years after TOP for fetal anomaly before 24 weeks of gestation. We used standardised questionnaires to investigate grief, posttraumatic symptoms, and psychological and somatic complaints.
Women generally adapted well to grief. However, a substantial number of the participants (17.3%) showed pathological scores for posttraumatic stress. Low-educated women and women who had experienced little support from their partners had the most unfavourable psychological outcome. Advanced gestational age at TOP was associated with higher levels of grief, and posttraumatic stress symptoms and long-term psychological morbidity was rare in TOP before 14 completed weeks of gestation. Higher levels of grief and doubt were found if the fetal anomaly was presumably compatible with life.
Termination of pregnancy for fetal anomaly is associated with long-lasting consequences for a substantial number of women. Clinically relevant determinants are gestational age, perceived partner support, and educational level.
Prenatal diagnostic techniques both enable and force women and couples to make decisions about whether to continue a pregnancy where the fetus has an anomaly. Few studies have explored the decision-making and bereavement processes of women who terminate a desired pregnancy after the discovery of a fetal anomaly. This reports the qualitative results of a study designed to explore these processes while placing them within the context of the societal milieu. Findings are reported as themes that emerged from the 30 intensive interviews conducted with women at varying stages after this experience. These include mythical expectations based on denial that anomaly could occur, misconceptions about the nature of prenatal testing and inaccurate expectations about the experience and duration of grief. Further, the contradictory norms in society are defined as creating additional dilemmas for women as they attempt to gain support and understanding following their loss. Suggestions for how providers may assist women with their grief are incorporated.
During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man's confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police. In this article the junior doctor, the palliative medicine specialist, a medical ethicist, and a lawyer consider the case from their various perspectives.
Tissue plasminogen activator (tPA) is administered to patients with suspected ischemic stroke to improve blood flow to the brain In rare cases, patients present with complaints of stroke symptoms that appear to be non-organic due to malingering, factitious disorder, or conversion disorder (psychogenic stroke mimics). Deciding whether or not to administer tPA to these patients can be challenging. The risk of hemorrhage after administration of tPA is low, but not zero. The ethical principles of beneficence and nonmaleficence need to be weighed carefully in these situations. We present two cases of patients with suspected psychogenic stroke mimics to illustrate the ethical challenges faced in identifying and managing psychogenic stroke mimics. Further research is needed to demonstrate effective treatment strategies for patients with acute stroke symptoms of psychogenic etiology.
Prenatal genetic diagnostic testing is intended to determine, with as much certainty as possible, whether a specific genetic disorder or condition is present in the fetus. In contrast, prenatal genetic screening is designed to assess whether a patient is at increased risk of having a fetus affected by a genetic disorder. Originally, prenatal genetic testing focused primarily on Down syndrome (trisomy 21), but now it is able to detect a broad range of genetic disorders. Although it is necessary to perform amniocentesis or chorionic villus sampling (CVS) to definitively diagnose most genetic disorders, in some circumstances, fetal imaging with ultrasonography, echocardiography, or magnetic resonance imaging may be diagnostic of a particular structural fetal abnormality that is suggestive of an underlying genetic condition.The objective of prenatal genetic testing is to detect health problems that could affect the woman, fetus, or newborn and provide the patient and her obstetrician-gynecologist or other obstetric care provider with enough information to allow a fully informed decision about pregnancy management. Prenatal genetic testing cannot identify all abnormalities or problems in a fetus, and any testing should be focused on the individual patient's risks, reproductive goals, and preferences. It is important that patients understand the benefits and limitations of all prenatal screening and diagnostic testing, including the conditions for which tests are available and the conditions that will not be detected by testing. It also is important that patients realize that there is a broad range of clinical presentations, or phenotypes, for many genetic disorders and that results of genetic testing cannot predict all outcomes. Prenatal genetic testing has many benefits, including reassuring patients when results are normal, identifying disorders for which prenatal treatment may provide benefit, optimizing neonatal outcomes by ensuring the appropriate location for delivery and the necessary personnel to care for affected infants, and allowing the opportunity for pregnancy termination.The purpose of this Practice Bulletin is to review the current status of prenatal genetic diagnostic testing and the evidence supporting its use. For information regarding screening for fetal aneuploidy, refer to Practice Bulletin No. 163, Screening for Fetal Aneuploidy.
Background:
Fetal specialists support standardizing the practice of offering women palliative care for life limiting fetal diagnoses. However, there is little data available regarding what fetal specialists do in practice. Since 2003, our center has kept a database of all women referred for fetal complications.
Methods:
Retrospective electronic chart review of pregnant women between 2006 and 2012 using UCSD's Fetal Care and Genetics Center referral database. Objectives were to determine: (I) how many high risk pregnancies referred to the University of California San Diego Medical Center (UCSD) over a 6-year period have potentially life limiting fetal diagnoses; (II) pregnancy outcome; and (III) referral rate to perinatal palliative care.
Results:
Between July 2006 and July 2012, 1,144 women were referred to UCSD's Fetal Care and Genetics Center, a tertiary care center. Of that cohort, 332 women (29%) were diagnosed prenatally with a potentially life limiting fetal diagnosis. Most women were Hispanic or Latino, married, and had previous children. The median gestation at confirmed diagnosis was 19 weeks. Trisomy 13, Trisomy 18, and anencephaly comprised 21% of cases. The pregnancy outcome was determined in 95% cases: 56% therapeutic abortion, 16% intrauterine fetal demise, and 23% live birth. Only 11% of cases were referred to perinatal palliative care.
Conclusions:
The vast majority of women with potentially life limiting fetal diagnoses are not referred to perinatal palliative care. Evaluation of how to integrate palliative care into high-risk obstetrics is needed.
Importance
Trisomy 13 and 18 are genetic diagnoses with characteristic physical features, organ anomalies, and neurodevelopmental disability. Most children with these disorders die shortly after birth, although limited data suggest some children survive longer. Surgeries are controversial, and little evidence is available about outcomes.
Objective
To describe survival and utilization of any type of surgery among children with trisomy 13 and 18 born over a 21-year period in Ontario, Canada.
Design, Setting, and Participants
This retrospective cohort study used linked health administrative databases to identify children born in Ontario between April 1, 1991, and March 31, 2012, with a diagnosis code for trisomy 13 or 18 on a hospital record in the first year of life. Survival was calculated from birth and death dates; children living on March 31, 2013, were censored at their last clinical encounter.
Exposures
All procedures classified as occurring in an operating room through March 31, 2013, were categorized as major, intermediate, or minor surgeries.
Main Outcomes and Measures
Survival and surgical procedure utilization.
Results
The cohorts included 174 children with trisomy 13 (mean [SD] birth weight, 2.5 [0.7] kg; 98 [56.3%] female); and 254 children with trisomy 18 (mean birth weight, 1.8 [0.7] kg; 157 [61.8%] female), with follow-up times of 0 to more than 7000 days. Median (interquartile range [IQR]) survival times were 12.5 (2-195) days for trisomy 13 and 9 (2-92) days for trisomy 18. Mean 1-year survival for trisomy 13 was 19.8% (95% CI, 14.2%-26.1%) and 12.6% (95% CI, 8.9%-17.1%) for trisomy 18. Ten-year survival for trisomy 13 was 12.9% (95% CI, 8.4%-18.5%) and 9.8% (95% CI, 6.4%-14.0%) for trisomy 18. Survival did not change over the study period. Forty-one children (23.6%) with trisomy 13 and 35 children (13.8%) with trisomy 18 underwent surgeries, ranging from myringotomy to complex cardiac repair. Median age at first surgery for trisomy 13 was 92 (IQR, 30.5-384.5) days and for trisomy 18, it was 205.5 (IQR, 20.0-518.0) days. Kaplan-Meier curves showed 1-year survival after first surgery of 70.7% (95% CI, 54.3%-82.2%; n = 23) for trisomy 13 and 68.6% (95% CI, 50.5%-81.2%; n = 29) for trisomy 18.
Conclusions and Relevance
Among children born with trisomy 13 or 18 in Ontario, early mortality was the most common outcome, but 10% to 13% survived for 10 years. Among children who underwent surgical interventions, 1-year survival was high.
Objectives-This report presents final 2014 data on U.S. deaths, death rates, life expectancy, infant mortality, and trends, by selected characteristics such as age, sex, Hispanic origin, race, state of residence, and cause of death.
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.
Despite a life-limiting fetal diagnosis, prenatal attachment often occurs in varying degrees resulting in role identification by an individual as a parent. Parents recognize quality care and report their satisfaction when interfacing with health care providers.
The aim was to test an instrument measuring parental satisfaction and quality indicators with parents electing to continue a pregnancy after learning of a life-limiting fetal diagnosis.
A cross sectional survey design gathered data using a computer-mediated platform. Subjects were parents (n=405) who opted to continue a pregnancy affected by a life-limiting diagnosis. Factor analysis using principal component analysis with Varimax rotation was used to validate the instrument, evaluate components, and summarize the explained variance achieved among quality indicator items. The Prenatal Scale was reduced to 37 items with a three-component solution explaining 66.19% of the variance and internal consistency reliability of 0.98. The Intrapartum Scale included 37 items with a four-component solution explaining 66.93% of the variance and a Cronbach α of 0.977. The Postnatal Scale was reduced to 44 items with a six-component solution explaining 67.48% of the variance. Internal consistency reliability was 0.975.
The Parental Satisfaction and Quality Indicators of Perinatal Palliative Care Instrument is a valid and reliable measure for parent-reported quality care and satisfaction.
Use of this instrument will enable clinicians and researchers to measure quality indicators and parental satisfaction. The instrument is useful for assessing, analyzing, and reporting data on quality for care delivered during the prenatal, intrapartum, and postnatal periods.
A mother whose baby is diagnosed prenatally with a life-threatening condition frequently has weeks or months to prepare for birth and death. Research and anecdotal evidence affirm a mother's mindful journey with her unborn child. Bowlby's theory of caregiving, reciprocal to attachment provides a theoretical framework for this study. Caregiving includes the goals of protecting, nurturing, and socializing a child. The authors used directed content analysis for a secondary analysis of data from the category of caregiving, created in a prior study of 15 mothers recruited from perinatal hospice support organizations. Results identify multiple ways that mothers protect, nurture, and socialize, and add a new category: final acts of caregiving. Understanding caregiving as a goal-corrected system strengthens the evidence for giving mothers every opportunity to care for their babies in ways that are normal and natural to them.
Perinatal loss in its many forms results in profound grief and distress for women, their partners, and families. The possibility of personal growth in the aftermath of perinatal loss has been suggested through early research; however, systematic research on posttraumatic growth after perinatal loss has not been well-developed. Posttraumatic growth is positive psychological change as a result of confronting a challenging life experience. After a short description of perinatal loss, this article presents the conceptual development of posttraumatic growth, its measurement, and early research suggesting that posttraumatic growth occurs after perinatal loss. Finally, future avenues for research are recommended, and suggestions are made as to how clinicians may acknowledge the positive transformative work of bereavement in order to enhance posttraumatic growth in their patients who have experienced the painful loss of their expected children.
Pregnancy termination for fetal abnormality (TFA) can have significant psychological repercussions, but little is known about the coping strategies involved in dealing with TFA. This study examined the relationships between women's coping strategies and perinatal grief.
166 women completed a survey online. Coping and perinatal grief were measured using the Brief COPE and Short Perinatal Grief scales. Data were analysed through multiple regression analyses.
Despite using mostly adaptive coping strategies, women's levels of grief were high and varied according to obstetric and termination variables. Grief was predicted by: behavioural disengagement, venting, planning, religion, self-blame, being recently bereaved, being childless at the time of TFA, not having had children/being pregnant since TFA, and uncertainty about the decision to terminate the pregnancy. Acceptance and positive reframing negatively predicted grief.
Identifying women vulnerable to poor psychological adjustment and promoting coping strategies associated with lower levels of grief may be beneficial. This could be addressed through information provision and interventions such as Cognitive Behavioural Therapy or Acceptance and Commitment Therapy. This article is protected by copyright. All rights reserved.
Decision research has only recently started to take seriously the role of emotions in choices and decisions. Regret is the emotion that has received the most attention. In this article, we sample a number of the initial regret studies from psychology and economics, and trace some of the complexities and contradictions to which they led. We then sketch a new theory, decision justification theory (DJT), which synthesizes several apparently conflicting findings. DJT postulates two core components of decision–related regret, one associated with the (comparative) evaluation of the outcome, the other with the feeling of self–blame for having made a poor choice. We reinterpret several existing studies in DJT terms. We then report some new studies that directly tested (and support) DJT, and propose a number of research issues that follow from this new approach to regret.
To report the state of the science since 1995 on the concept of palliative care for parents who opt to continue a pregnancy after receiving a life-limiting fetal diagnosis.
PubMed, Ovid, PsycInfo, CINAHL, and Medline were searched from 1995 to July 2012 using the terms perinatal palliative care and perinatal hospice.
Inclusion criteria included empirical studies written in English that focused on experiences of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or on perinatal palliative care. Twenty studies met inclusion criteria.
Results from empirical studies contributing to the knowledge base of perinatal palliative care are presented.
Women are confronted with powerful emotions, challenging decisions, and considerable uncertainty following the news of a life-limiting fetal anomaly. Women choose to continue their pregnancies for a variety of reasons and when doing so embark on a search for meaning. The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voiced positive feedback about their decisions to continue their pregnancies, and parents cited personal growth in the aftermath. Perinatal palliative care programs provide services that incorporate early and integrative care beginning in the antenatal period. A multidisciplinary coordinated approach provides parents with comprehensive, holistic support.
More research is needed to elucidate the factors that will benefit parents who continue their pregnancies. Investigating the needs and perceptions of clinicians and their willingness to participate in this new model of care is necessary as is examining barriers that may undermine care. Nurses can lead research on these topics and implement evidence-based practice grounded on study findings.
In a response to an article by Hobfoll and colleagues, theoretical and empirical considerations regarding the concept of posttraumatic growth are reviewed. It is noted that posttraumatic growth should be assessed as such, with measures developed specifically to address this construct; that it follows a challenge to and re-examination of core beliefs, not every bad experience; it can be influenced by many factors; it can coexist with distress during stages of the process without indicating that growth is unimportant or negative; and it can follow various trajectories, including ones where it may at first serve one function, but later involve personally transformative changes.
En réponse à un article de Hobfoll et al., des réflexions théoriques et empiriques concernant le concept de croissance post-traumatique sont menées. On note que la croissance post-traumatique doit être estimée à partir de mesures qui lui sont propres. Il est aussi souligné que la croissance post-traumatique survient après un défi et un réexamen des croyances fondamentales et non après chaque expérience négative. La croissance post-traumatique peut être influencée par de nombreux facteurs, elle peut coexister avec la détresse durant les étapes du processus sans que, pour autant, cela soit un indicateur d’une croissance négative ou peu importante. Enfin, elle peut suivre des trajectoires variées, y compris celles où elle remplit au départ une fonction et ultérieurement est impliquée directement dans des changements.
This paper addresses the effects of the anticipation of regret on decision making under uncertainty. Regret is a negative, cognitively based emotion that we experience when realizing or imagining that our present situation would have been better, had we decided differently. The experience of post-decisional regret is for a large part conditional on the knowledge of the outcomes of the rejected alternatives. A series of studies is reviewed in which it is shown that whether or not decision makers expect post-decisional feedback on rejected alternatives has a profound influence on the decisions they make. These studies, focusing on choice between gambles, consumer decision making and interpersonal decision making, also show that anticipated regret can promote risk-averse as well as risk-seeking choices. This review of empirical studies is followed by a discussion of the conditions under which we can expect the anticipation of regret to take place. Copyright © 1999 John Wiley & Sons, Ltd.
Advancing technology has made detecting fetal abnormalities in the first and second trimesters a reality. Few families are prepared for the difficult decisions that must be made if their unborn children are diagnosed with a life-limiting condition. Expectant parents are compelled to make decisions on the basis of limited options. A systematic review of the literature is presented with an aim to inform clinicians of parental experiences and outcomes after diagnosis of a fetal anomaly. The review focused on patients given a diagnosis for fetal anomalies for the 40-year period from 1970 to 2010 by using the key words such as fetal anomaly, congenital malformations, pregnancy termination, perinatal palliative care, and perinatal hospice. Regardless of the option taken, women often experienced intense grief reactions. Both giving birth to a child with a life-limiting condition and termination of pregnancy for fetal anomaly can be emotionally traumatic life events, both associated with psychological morbidity. Nonaggressive obstetric management, allowing natural birth without life-sustaining therapeutics, is an option for families. Couples presented with a coordinated perinatal palliative care model may opt to continue their pregnancy. Families who experienced perinatal hospice/palliative care report positive feedback, but more research is needed to explore the psychological outcomes of this choice.
The traumatic aspects of positive diagnosis of a severe fetal anomaly have garnered the most attention, but the personal growth in the aftermath of this event remains relatively unexplored. We used the five dimensions of growth and change from Posttraumatic Growth Inventory (PTGI) to analyze data generated from ethnographic interviews conducted with 15 women and 10 of their male partners in the aftermath of a severe fetal diagnosis. Eighteen (12 women and 6 men) of these 25 participants experienced positive change across these dimensions. Relating to others was the dimension that showed the most consistent early and prolonged change. Six of the 10 couples had congruent profiles of change. Negative change was evident in 2 women and 2 men. Recognizing the potential for growth allows nurses opportunities to promote it in the aftermath of severe fetal diagnosis.
Twenty women who attended the author's natural childbirth classes between 1968 and 1974 were the informants in this study of long-term memories of their first childbirths. The data from each informant consisted of 1) a labor and birth questionnaire, including an open-ended account of her labor, written shortly after her baby was born; 2) a similar questionnaire and account written in 1988 and 1989; and 3) a transcribed interview during which her memories and perceptions were discussed and any discrepancies between the questionnaires were explored. The questionnaires were compared for consistency of recall, and the interviews consulted for further clarification. Specific memories were excerpted, compared, classified, tabulated, and summarized. Findings were that, years later, women's memories are generally accurate, and many are strikingly vivid, especially of onset of labor; rupture of the membranes; arrival at the hospital; actions of doctors, nurses, and partners; particular interventions; the birth; and first contact with the baby. Most memory lapses or confusion were minor. Evidence of a halo effect was observed as well.
To determine if the psychologic constructs of self-criticism and marital adjustment, considered jointly with obstetric and demographic factors, are significant predictors of grief during a pregnancy after a miscarriage or perinatal death.
Participants included 60 pregnant women with previous miscarriages or perinatal deaths, and 50 of their partners. Participants completed a package of psychometric instruments between the tenth and 19th week of gestation. Predictors of grief (active grief, difficulty coping, despair) included (1) psychologic factors: marital adjustment and self-criticism; (2) demographic factors: age and number of living children; and (3) obstetric factors: gestational age at time of loss, number of losses, and time between loss and subsequent conception.
Stepwise regression analyses were conducted for each grief component for women and men. For women, active grief was significantly associated with high self-criticism and later losses (R(2) = 0.31). Later losses and longer time between loss and conception were significantly associated with difficulty coping (R(2) = 0.55) and despair (R(2) = 0.44). In men, active grief was associated with high self-criticism and later losses (R(2) = 0.28), difficulty coping (R(2) = 0.18), and despair (R(2) = 0.25) with high self-criticism. A trend was found for poor marital adjustment to be associated with higher levels of difficulty coping and despair in men.
High levels of self-criticism and later gestational age at time of loss are predictors of increased grief during a pregnancy after a miscarriage or perinatal death. Increased time between loss and subsequent conception is also predictive of increased grief for women. For men, low levels of marital adjustment are predictive of increased grief. These results may be helpful in counselling couples considering pregnancy after a loss.
This longitudinal cohort study explored the relationship of guilt- and shame-proneness to grief in women (N = 86) and men (N = 72) 1 month ('early') and 13 months ('late') after a stillbirth or neonatal death. Hierarchical regression showed that shame-proneness explained a small but statistically significant proportion of the variance in early grief in women (9%) and men (19%), whereas guilt-proneness did not contribute further to the variance in early grief. Conversely, shame-proneness explained a statistically significant and substantial proportion of the variance in late grief in women (27%) and men (56%), and guilt-proneness made a significant further contribution to the variance in women (21%) and men (11%). Overall, shame- and guilt-proneness explained 45% of the variance in late grief in women and 63% of the variance in men. Moreover, early shame-proneness predicted late grief in men. Personality guilt- and shame-proneness showed important relationships with late grief in both women and men, but there were notable sex differences.
There are different views about the dimensions of the positive changes resulting from the struggle with traumatic events. Using Posttraumatic Growth Inventory (PTGI) data reported by participants (N = 926) experiencing a variety of traumatic events, five models of the underlying structure of the PTGI were tested via confirmatory factor analyses to examine whether the PTGI comprises three domains (Changed Perception of Self, Changed Interpersonal Relationships, and Changed Philosophy of Life), five factors (Relating to Others, New Possibilities, Personal Strength, Spiritual Change, and Appreciation of Life), or a unitary dimension. Results indicated an oblique 5-factor model best fit the data, thus revealing the PTGI was multidimensional. Present findings offer implications for understanding the nature of posttraumatic growth.
American College of Obstetricians and Gynecologists and Society for Maternal-Fetal Medicine
American College of Obstetricians and Gynecologists and Society for Maternal-Fetal Medicine, "Practice
Bulletin Number 162: Prenatal Diagnostic Testing for Genetic Disorders," Obstetrics & Gynecology 127, no. 5 (May
2016): e108-e22.
Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States
C. Wool et al., "Provision of Services in Perinatal
Palliative Care: A Multicenter Survey in the United States,"
Journal of Palliative Medicine 19, no. 3 (March 2016): 279-85.
Posttraumatic Growth," see note 7 above; Black and Sandelowski
- B Bowers
- L Schatzman
- Denney-Koelsch
B. Bowers and L. Schatzman, "Dimensional Analysis," in Developing Grounded Theory: The Second Generation, ed. J.M. Morse et al. (Walnut Creek, Calif.: Left
Coast Press, 2009), 86-106.
21. Schatzman, "Dimensional Analysis," see note 20
above, p. 104.
22. Ibid.
23. Ibid.
24. Ibid.
25. Ibid.
26. Ibid.
27. Black and Wright, "Posttraumatic Growth," see
note 7 above; Black and Sandelowski, "Personal Growth,"
see note 8 above.
28. Côté-Arsenault and Denney-Koelsch, "Have No
Regrets," see note 5 above.
29. Black and Wright, "Posttraumatic Growth," see
note 7 above.
A Secure Base, see note 14 above. 42. Ibid.; Limbo and Lathrop
- Bowlby
Bowlby, A Secure Base, see note 14 above.
42. Ibid.; Limbo and Lathrop, "Caregiving," see note
17 above.
43. Bowlby, A Secure Base, see note 14 above.
The Travesty of Choosing after Positive Prenatal Diagnosis
- M Sandelowski
- J Borroso
M. Sandelowski and J. Borroso, "The Travesty of
Choosing after Positive Prenatal Diagnosis," Journal of Obstetric, Gynecologic, & Neonatal Nursing 34, no. 3 (May
2005): 307-18.
Extent and Predictors of Decision Regret," see note 48 above
- Becerra-Pérez
- Brehaut Menear
Becerra-Pérez, Menear, Brehaut, and Légaré, "Extent and Predictors of Decision Regret," see note 48 above.
57. K.L. Marc-Aurele, A.D. Hull, M.C. Jones, and D.H.
Provision of Services
- Wool
Wool et al., "Provision of Services," see note 6
above.
A Perinatal Pathway for Babies with Palliative Care Needs
- G Dickson
G. Dickson, A Perinatal Pathway for Babies with
Palliative Care Needs, 2nd ed. (Bristol, U.K.: Together for
Short Lives, 2017);
Resolve Through Sharing (RTS): Position Paper on Perinatal Palliative Care, rev
- R Limbo
- S Toce
- T Peck
R. Limbo, S. Toce, and T. Peck, Resolve Through Sharing (RTS): Position Paper on Perinatal
Palliative Care, rev. ed. (La Crosse, Wisc.: Gundersen Lutheran Medical Foundation, 2008-2016), http://www.
gundersenhealth.org/app/files/public/2081/RTS-Position-Paper-Perinatal-Palliative-Care.pdf.