"I Would Do It All Over Again": Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis.

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.

Guided Participation for Clinical Practice: A Middle-Range Theory of Teaching and Learning.

Theory of guided participation for clinical practice presents teaching and learning in the context of the teacher and learner relationship. The teacher functions as a guide bringing the learner as a participant into a reciprocal, dynamic process that addresses issues learners are working on, acknowledging and directing learning activity to personal and clinical goals. Outcomes of this process are competencies in health-related functions. The process proceeds with understanding of the learner's internal working model (IWM) of self, other, and relationships. The IWM goals, intentions, and expectations formulate guided participation processes for development of competencies specific to the learner's cultural and personal situation and health need.

Applying the Theory of Guided Participation to Clinical Practice.

We present an evidence-based clinical teaching and learning method based on the middle-range theory of Guided Participation (GP). Typically, teaching and learning in a clinical setting refer to providing information based on the learner's diagnosed condition. With GP, the relationship between guide and patient or client is central to how GP sessions proceed. The guide uses GP processes to identify issues important to the learner and to heighten the learner's competencies for self-care or for caregiving within the family and the community. Through reflection, GP practice heightens competencies in the guide as well. Teaching and learning occur in tandem with learning goals cocreated to help learners resolve, change, and even transform their health-related issues. Learning is embedded in participatory experience that the guide structures, often with the learner. A dynamic process, GP is fashioned and refashioned as the learner develops competencies or acquires new health-related needs. Guided participation assumptions are illustrated with clinical cases drawn from GP practice, and we discuss skills and supports needed for the practice and future directions for extending the method.

Making a case: creating a perinatal palliative care service using a perinatal bereavement program model.

This article explores the innovative approach of creating a perinatal palliative care service in an institution that already has a perinatal bereavement program. The proposed model focuses on the importance of establishing and maintaining relationship among and between nurses, other clinicians, and parents. The authors examine theoretical and clinical perspectives, recognizing the presence of both grief and hope from the moment of a life-threatening fetal diagnosis. The article identifies key program development processes, potential barriers, and practical implementation strategies as methods to ensure the delivery of seamless perinatal palliative care from diagnosis, through pregnancy, delivery, and the baby's living and dying.

Using Theory to Inform and Guide Perinatal Bereavement Care.

Providing nursing care to perinatally bereaved women and their families is difficult, emotionally demanding, and complicated. Here we demonstrate how, through understanding the theoretical underpinnings of Guided Participation and perinatal grief intensity, nurses can significantly expand their competence and confidence in their ability to provide highly individualized, supportive, relationship-based perinatal bereavement care. The way that parents respond to a perinatal loss may range from little response to highly intense, long-lasting grief. Grief after such losses may be intensified when the loss experience is highly incongruent with a parent's expectations, and the parent is unable to act to reduce this incongruence. The Hutti Perinatal Grief Intensity theoretical framework and the Perinatal Grief Intensity Scale may be used to help identify parents who are likely to experience highly intense grief and need for professional follow-up after perinatal loss. However, many parents who experience intense grief have little experience in coping with such feelings. Guided Participation is a middle-range theory of teaching and learning. It is used in the context of perinatal bereavement to help bereaved parents navigate the feelings and numerous grief-related issues that occur as a consequence of the loss, with the nurse serving as the expert guide. This combined theoretical approach to care assists nurses to assess grief intensity and to provide highly effective, relationship-driven care.

Application of Caring Theory to Nursing Care of Women Experiencing Stillbirth.

PURPOSE: The purpose of this study was to determine the extent to which labor and delivery nurses used the tenets of Swanson's middle-range theory to care for women whose babies were stillborn. STUDY DESIGN AND METHODS: A secondary analysis of qualitative in-depth interview data from 20 labor and delivery nurses obtained during a recent grounded theory study was conducted using the directed content analysis method. The five caring processes as described in Swanson's theory were used as a priori codes to conduct the analysis. RESULTS: Nursing care of a woman experiencing a stillbirth included finding a way to connect with her and to understand what she was experiencing (knowing), spending extra time with her (being with), protecting her and preserving her dignity (doing for), providing information and explanations in a clear and methodical manner (enabling), and ensuring that she did not blame herself to facilitate the grieving/healing process (maintaining belief). CLINICAL IMPLICATIONS: The caring processes outlined in Swanson's theory of caring provide a valuable guide that can be used when caring for women experiencing stillbirth.

Respectful Disposition After Miscarriage: Clinical Practice Recommendations.

Compassionate clinical practice guidelines for healthcare providers for respectful disposition after miscarriage are presented. When woven into the whole of a clinician's practice, these guidelines provide the framework for giving women and their families the care they want and deserve when experiencing miscarriage. Relying on theoretical concepts of personhood, place, and protection, care providers can assess the unique meaning a woman assigns to her early pregnancy loss and offer interventions that embrace the concept of respectful disposition. Respectful methods of disposition involve a continuum of care that shows respect for remains and relies on person-, family-, and culture-centered nursing care. Policies, practices, and perspectives that flow from respectful disposition have women and families at their core and flexibility to cocreate care. This involves courage and competence. Several states have enacted fetal disposition laws, but these mandates are of questionable benefit because the expertise of healthcare leaders, nurses, physicians, chaplains, and other stakeholders must be involved in this sensitive and important area of care. Compassionate care cannot be legislated. We offer a practical approach to respectful disposition, including how to handle and prepare remains and examples of burial and memorial services, which will give clinicians the ability to respond empathetically and respectfully to the heart-rending plea of a woman who asks, "Where is my baby?"

Meaningful moments.

Rituals provide meaning and order to transitions, and symbolically connect people and events. Despite the prevalence of perinatal loss (miscarriage, stillbirth, and newborn death) and pediatric deaths, little has been written about the use of rituals surrounding these losses. The purpose of this article is to define the dimensions of a ritual as each pertains to perinatal and pediatric death, and provide concrete applications for use in clinical practice. Intention, participation, and meaning-making are the key dimensions of rituals that arise from clinical encounters. Initiating the discussion about ritual and the timing of the ritual itself are critical elements for the nurse who is caring for a bereaved family. Because of the paucity of research on using rituals in perinatal and pediatric death, nurse researchers should design studies that explore the outcomes of using rituals, both in the short- and long-term, following the death.

A continuing education program for hospital and public health nurses to guide families of very low birth-weight infants in caregiving.

Nurses have a critical role in family development of competencies for giving care to very low birth-weight infants, However, current information-based methods of preparation may be inadequate for competency development. This article describes a continuing education program designed to strengthen nurses' support of families in developing caregiving competencies through processes of guided participation. Program effectiveness was explored with: (1) a survey of participant and non-participant nurse satisfaction with family work and with organizational resources and practices; (2) a description of relationship and caregiving competencies for mothers who had and had not received guided participation; and (3) a review of mothers' reports of their experience either with or without guided participation. Organizational arrangements and mechanisms for establishing guided participation practice within an agency, including ongoing reflective supervision sessions, peer collaboration, and documentation of competency development, are discussed.

Promoting safety of young children with guided participation processes.

The infant's complete dependence on others for protection and the young child's desire to explore the world puts them in harm's way without the caregiver's vigilance and commitment to practices that promote safety. Using a car seat, placing an infant in the supine position for sleep, and watching and monitoring a child's activities within the home are just a few of the safety practices required of a young child's caregiver. Safety information alone may not be adequate to develop a caregiver's competencies for safe practice. A process of clinician-caregiver co-participation to support competency development for current and future caregiving safety practice is described for clinicians who are in a position to support development of these competencies, including public health nurses and nurse practitioners.

"Being Sure": women's experience with inevitable miscarriage.

PURPOSE: To extend understanding of women's experience of miscarriage by exploring their approach to decisions about what to do after learning a miscarriage was likely. STUDY DESIGN AND METHODS: Using dimensional analysis, a technique generic to grounded theory, we analyzed interview transcripts of 23 women who experienced miscarriage (before 14 weeks gestation) at a midwestern medical center. We explored women's experiences by focusing on (1) how they came to know they were having a miscarriage and (2) how they decided what to do next. Both are key, yet relatively unexplored, constructs of early miscarriage. RESULTS: Being Sure emerged as the central process for women as they made decisions about what was happening to them, and about their treatment options. Participants needed to be sure that they were having a miscarriage (that the pregnancy was truly over), and also be sure that they were choosing the right treatment option for them (surgical, medical, or expectant management). CLINICAL IMPLICATIONS: Nurses caring for women in the throes of an inevitable miscarriage can use the information in this article to support women in their quest toward Being Sure. Helping women thusly encompasses assisting women to understand their symptoms, come to terms with the inevitability of the pregnancy loss, and be comfortable with which treatment they choose for the miscarriage.

Languages of Grief: a model for understanding the expressions of the bereaved.

The aim of this work is to provide an overview of the key features of the expressions of grief. Grief is a response to loss or anticipated loss. Although universal, its oral and nonverbal expression varies across cultures and individuals. Loss is produced by an event perceived to be negative to varying degrees by the individuals involved and has the potential to trigger long-term changes in a person's cognitions and relationships. The languages used by the bereaved to express grief differ from the language used by professionals, creating dissonance between the two. Data were obtained from English language Medline and CINAHL databases, from professional and personal experiences, interviews with experts, and exploration of cemetery memorials. Blog websites and social networks provided additional materials for further refinement of the model. Content analysis of the materials and agreement by the authors as to the themes resulted in the development of the model. To bridge the gap between professional language and that used by the bereaved, a Languages of Grief model was developed consisting of four Modes of Expression, four Types of Language, plus three Contingent Factors. The Languages of Grief provides a framework for comprehending the grief of the individual, contributing to clinical understanding, and fruitful exploration by professionals in better understanding the use of languages by the bereaved. Attention to the Modes of Expression, Types of Language, and Contingent Factors provides the professional with a richer understanding of the grieving individual, a step in providing appropriate support to the bereaved. The Languages of Grief provides a framework for application to discrete occurrences with the goal of understanding grief from the perspective of the bereaved.

Caregiving motivations and developmentally prompted transition for mothers of prematurely born infants.

Parenting transition is a process prompted by infant developmental changes and may be defined by motivations for caregiving and the goals they indicate. Qualitative exploration of neonatal and 1-year feeding experience of 22 mothers of very-low-birth-weight infants revealed 3 types of caregiving-related motivations-nurturing, relating, and shaping quality of life. The clusters of motivations differed between ages and across mothers, suggesting transition in parenting reflective of both infant development and maternal goals. Study with a larger sample is needed to examine change in caregiving motivations and their function in characterizing parenting transitions.

The tie that binds: relationships in perinatal bereavement.

Relationship is a central concept to the delivery of quality perinatal bereavement care. This article explores relevant bereavement research and clinically based writings about relationship in the care of families experiencing perinatal loss. Focusing on relationship provides a framework to guide interventions that will be perceived as meaningful and helpful to grieving parents. From the moment parents learn the difficult news of their baby's poor prognosis or death, nurses must strive to establish trust while building an effective working relationship with the family. A nurse with an understanding of the relationship needs can guide parents in creating a context for supporting each family member dealing with this unexpected family tragedy. Through sensitive follow-up bereavement care, nurses provide a source of hope for grieving families over time. Ultimately, nurses must find meaningful ways of self-care as a way of reinvesting in future relationship with other grieving families.

Respectful disposition in early pregnancy loss.

This article discusses an issue rarely seen in the professional literature: the tangible ways nurses can respect a woman's needs following miscarriage by ensuring the safe handling and disposition of fetal tissue or remains. Concepts of personhood, place, and protection are important for nurses to understand within the context of a woman's response to miscarriage. Hospitals or clinics that foster a culture of respectful fetal disposition should have a system in place to bury tissue or fetal remains in a designated area; in fact, several states have enacted laws that regulate what hospitals and clinics must do, or what women must be offered, after a miscarriage or ectopic pregnancy. Barriers may exist to creating a culture of respectful disposition, including staff attitudes, perceived time and financial constraints, lack of knowledge, and inefficient communication between departments. Nurses can begin implementing change in this regard through conducting a needs assessment using guiding questions contained in this article. In addition, through communication, education, and implementation of respectful disposition, nurses can promote safe processes that will honor women's preferences and wishes for care following a miscarriage.

Mothers' understanding of their infants in the context of an internal working model of caregiving.

Exploration of mothers' understanding of their infants was guided by the concept of internal working model of caregiving, which includes relationship-relevant expectations and intentions. Twenty-nine mothers of healthy, term infants participated in semistructured interviews concerning actual and hypothetical caregiving episodes. Expectations and intentions were each rated with an ordinal rating (1-6) that qualified adaptiveness or attunement. On average, mothers viewed their infants as having their own agendas and intended to accommodate them within limits. Further specification of expectations and intentions and exploration of conditions that contribute to ordinal types could help researchers and clinicians tailor interventions supportive of maternal development.