Ambiguous loss and post‐traumatic growth: Experiences of mothers whose school‐aged children were born extremely prematurely

Wilson, Caroline; Cook, Catherine

doi:10.1111/jocn.14319

Cited by 24 publications

(17 citation statements)

References 41 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Unlike parents of healthy newborns, parents of premature infants begin to develop their parental identity in and through their experience in the NICU. [23][24][25] The constant uncertainty present in the NICU environment and the process of accepting such uncertainty in a view of the future likely drives this identity development parallel to Mishel's description of patients living with chronic illness. 22 Those parents within our study whose infant had been discharged from the NICU relayed different struggles that they faced in their child's life after hospital discharge (e.g., feeding difficulties and developmental delays) and often described processing and managing the prognostic uncertainty associated with those struggles in a way that they had adapted while in the NICU.…”

Section: Discussionmentioning

confidence: 99%

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

et al. 2020

View full text Add to dashboard Cite

Objective This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. Study Design We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. Results Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. Conclusion While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

show abstract

Section: Discussionmentioning

confidence: 99%

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

et al. 2020

View full text Add to dashboard Cite

show abstract

“…A mixture of vulnerability and growth was underlined in a previous qualitative study, conducted among mothers whose school-aged children were born extremely prematurely; just as several participants of our research, these mothers celebrated their children's success. 25 The celebration of children's skills and their ability to overcome their disabilities becomes for certain participants the depiction of a hero trajectory, which may be related to the dimension of 'post-traumatic growth', such as 'new possibilities' and 'appreciation of life'. 24 Furthermore, the involvement of some parents in patient associations, even their participation in this study, may indicate the experience of 'new possibilities' and 'enhanced relationships'.…”

Section: Discussionmentioning

confidence: 99%

Familial experience of acute bacterial meningitis in children: a transversal qualitative study using interpretative phenomenological analysis

2021

View full text Add to dashboard Cite

ObjectivesTo capture the subjective experience of close family ascendants of acute bacterial meningitis survivors and to explore how they give meaning to this specific experience.DesignA qualitative study of indepth interviews using interpretative phenomenological analysis.Primary outcomeMain meaning-making processes of participants’ experience.SettingsParticipants were recruited through two associations of people affected by meningitis and their family ascendants.ParticipantsConvenience sampling of 11 women whose children or grandchildren were between 0.2 and 20 years old at the time of their meningitis diagnosis (M=4.06, SD=7.3). On average, 9.39 (SD=5.4) years had passed between the onset of illness and the interview.ResultsSix superordinate themes (meningitis disease; healthcare services and professionals; knowledge/ignorance; repercussions of the meningitis experience: ‘life afterwards’; sick child attitudes/behaviour; and sibling attitudes/behaviour) and two main meaning-making processes in relation to participants’ experience of meningitis were identified: (1) the sick child becoming a ‘hero’: comparison with other children; and (2) engaging action/attitude: finding the ‘positive’ of the traumatic experience and engaging action to improve the care system. These two processes underpin the psychological adjustment to meningitis and its consequences.ConclusionsThis study provides a unique insight into close family members’ first-hand experience with acute bacterial meningitis. Findings highlighted factors characterising the disease experience, the psychological adjustment of meningitis survivors’ families and their meaning-making processes. These findings are important for research and clinical practice, demonstrating the multidimensional impact of the disease on family ascendants, their need for professional psychological support and the importance of direct involvement of parents in identifying key aspects of care.

show abstract

“…Second, during the perinatal period situations may occur that go beyond the daily hassles and are labeled as an adversity or traumatic event. Examples include complications during pregnancy or traumatic childbirth which may activate the presence of resiliency attributes (Callahan and Borja, 2008;Dikmen-Yildiz et al, 2018;Wilson and Cook, 2018). Third, it is important that the individual perceives the situation as stressful or challenging to activate the resiliency attributes (Franklin et al, 2012;Dekel et al, 2017).…”

Section: Antecedentsmentioning

confidence: 99%

Perinatal Resilience for the First 1,000 Days of Life. Concept Analysis and Delphi Survey

et al. 2020

View full text Add to dashboard Cite

Background: The ability to cope with challenges and stress in life is generally understood as resilience. Pregnancy and parenthood are challenging times. The concept of resilience is receiving increasing interest from researchers, clinicians, and policy staff because of its potential impact on health, well-being, and quality of life. Nevertheless, the concept is less studied during the perinatal period. Objectives: The aim of this study is to understand the concept of perinatal resilience, including the underlying processes and more specifically for the first 1,000 days of life. Methods: A concept analysis according to the Walker and Avant (2011) framework was used, to investigate the basic elements of the concept. Concurrently, a two-round Delphi survey involving researchers, clinicians, epidemiologists, mothers, and fathers (N = 21), was conducted to prioritize the terms associated with perinatal resilience. Data collection took place between January and April 2019. Results: Through concept analysis and Delphi survey, five defining attributes for perinatal resilience were identified: social support, self-efficacy, self-esteem, sense of mastery and personality. The additional terms, rated important by the Delphi survey, were linked to the consequences of being resilient during the perinatal period for the individual and his/her family. Specifically, highlighted were the experiences of families in personal growth and achieving family balance, adaptation, or acceptance. Conclusion: Based on the results of the concept analysis and Delphi survey, we describe perinatal resilience for the first 1,000 days as a circular process towards a greater well-being in the form of personal growth, family balance, adaptation or acceptance, when faced with stressors, challenges or adversity during the perinatal period. The presence of resiliency attributes such as social support, sense of mastery, self-efficacy, and self-esteem enhance the capacity to be resilient and probably prevent mental health problems.

show abstract

Ambiguous loss and post‐traumatic growth: Experiences of mothers whose school‐aged children were born extremely prematurely

Cited by 24 publications

References 41 publications

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

Familial experience of acute bacterial meningitis in children: a transversal qualitative study using interpretative phenomenological analysis

Perinatal Resilience for the First 1,000 Days of Life. Concept Analysis and Delphi Survey

Contact Info

Product

Resources

About