It’s agony for us as well

2014 ◽  
Vol 23 (2) ◽  
pp. 176-190 ◽  
Author(s):  
Janet Green ◽  
Philip Darbyshire ◽  
Anne Adams ◽  
Debra Jackson
Keyword(s):  
Neonatal Intensive Care ◽  
Research Question ◽  
Human Beings ◽  
Structured Interviews ◽  
Neonatal Nurses ◽  
Probability Of Survival ◽  
Existential Suffering ◽  
Premature Babies ◽  
South Wales ◽  
Iatrogenic Pain

Background: Improved techniques and life sustaining technology in the neonatal intensive care unit have resulted in an increased probability of survival for extremely premature babies. The by-product of the aggressive treatment is iatrogenic pain, and this infliction of pain can be a cause of suffering and distress for both baby and nurse. Research question: The research sought to explore the caregiving dilemmas of neonatal nurses when caring for extremely premature babies. This article aims to explore the issues arising for neonatal nurses when they inflict iatrogenic pain on the most vulnerable of human beings – babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical consideration: Ethical processes and procedures set out by the ethics committee have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘inflicting pain’ comprised three sub-themes: ‘when caring and torture are the same thing’, ‘why are we doing this!’ and ‘comfort for baby and nurse’. The results show that the neonatal nurses were passionate about the need for appropriate pain relief for extremely premature babies. Conclusion: The neonatal nurses experienced a profound sense of distress manifested as existential suffering when they inflicted pain on extremely premature babies. Inflicting pain rather than relieving it can leave the nurses questioning their role as compassionate healthcare professionals.

scholarly journals Neonatal nurses’ response to a hypothetical premature birth situation: What if it was my baby?

2016 ◽  
Vol 25 (7) ◽  
pp. 880-896 ◽  
Author(s):  
Janet Green ◽  
Philip Darbyshire ◽  
Anne Adams ◽  
Debra Jackson
Keyword(s):  
Neonatal Intensive Care ◽  
Research Question ◽  
Premature Baby ◽  
Structured Interviews ◽  
Neonatal Nurses ◽  
Her Family ◽  
Premature Babies ◽  
South Wales ◽  
Personal Experiences

Background: Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities. Research question: The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks’ gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of ‘what if it was me and my baby’, or what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Relevant ethical approvals have been obtained by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘imagined futures’ was generated which comprised three sub-themes: ‘choice is important’, ‘not subjecting their own baby to treatment’ and ‘nurses and outcome predictions’. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies. Conclusion: The theme ‘imagined futures’ offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses’ past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks’ gestation or less.

Quality versus quantity: The complexities of quality of life determinations for neonatal nurses

2016 ◽  
Vol 24 (7) ◽  
pp. 802-820 ◽  
Author(s):  
Janet Green ◽  
Philip Darbyshire ◽  
Anne Adams ◽  
Debra Jackson
Keyword(s):  
Quality Of Life ◽  
Research Question ◽  
Premature Baby ◽  
Structured Interviews ◽  
Best Interest ◽  
Neonatal Nurses ◽  
Premature Babies ◽  
South Wales ◽  
Personal Experiences

Background: The ability to save the life of an extremely premature baby has increased substantially over the last decade. This survival, however, can be associated with unfavourable outcomes for both baby and family. Questions are now being asked about quality of life for survivors of extreme prematurity. Quality of life is rightly deemed to be an important consideration in high technology neonatal care; yet, it is notoriously difficult to determine or predict. How does one define and operationalise what is considered to be in the best interest of a surviving extremely premature baby, especially when the full extent of the outcomes might not be known for several years? Research question: The research investigates the caregiving dilemmas often faced by neonatal nurses when caring for extremely premature babies. This article explores the issues arising for neonatal nurses when they considered the philosophical and ethical questions about quality of life in babies ≤24 weeks gestation. Participants: Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia. Ethical considerations: Ethical processes and procedures have been adhered to by the researchers. Findings: A qualitative approach was used to analyse the data. The theme ‘difficult choices’ was generated which comprised three sub-themes: ‘damaged through survival’, ‘the importance of the brain’ and ‘families are important’. The results show that neonatal nurses believed that quality of life was an important consideration; yet they experienced significant inner conflict and uncertainty when asked to define or suggest specific elements of quality of life, or to suggest how it might be determined. It was even more difficult for the nurses to say when an extremely premature baby’s life possessed quality. Their previous clinical and personal experiences led the nurses to believe that the quality of the family’s life was important, and possibly more so than the quality of life of the surviving baby. This finding contrasts markedly with much of the existing literature in this field. Conclusion: Quality of life for extremely premature babies was an important consideration for neonatal nurses; however, they experienced difficulty deciding how to operationalise such considerations in their everyday clinical practice.

scholarly journals A burden of knowledge

2014 ◽  
Vol 19 (4) ◽  
pp. 485-494 ◽  
Author(s):  
Janet Green ◽  
Philip Darbyshire ◽  
Anne Adams ◽  
Debra Jackson
Keyword(s):  
Intensive Care ◽  
Neonatal Intensive Care ◽  
New South ◽  
Qualitative Approach ◽  
Internal Conflict ◽  
Right To Know ◽  
Neonatal Nurses ◽  
Probability Of Survival ◽  
Premature Babies ◽  
South Wales

Improved life-sustaining technology in the neonatal intensive care has resulted in an increased probability of survival for extremely premature babies. In the neonatal intensive care, the condition of a baby can deteriorate rapidly. Nurses and parents are together for long periods at the bedside and so form close and trusting relationships. Neonatal nurses as the constant caregivers may be presented with contradictory demands in attempting to meet the baby’s needs and being a patient and family advocate. This article aims to explore the issues arising for neonatal nurses when holding information about changes to a condition of a baby that they are unable to share with parents. Data were collected via interviews with 24 neonatal nurses in New South Wales, Australia. A qualitative approach was used to analyse the data. The theme ‘keeping secrets’ was identified and comprised of three sub-themes ‘coping with potentially catastrophic news’, ‘fear of inadvertent disclosure’ and ‘a burden that could damage trust’. Keeping secrets and withholding information creates internal conflict in the nurses as they balance the principle of confidentiality with the parent’s right to know information. The neonatal nurses experienced guilt and shame when they were felt forced by circumstances to keep secrets or withhold information from the parents of extremely premature babies.

scholarly journals Longitudinal Study of Music Therapy’s Effectiveness for Premature Infants and Their Caregivers (LongSTEP): Feasibility Study With a Norwegian Cohort

2021 ◽  
Author(s):  
Claire M Ghetti ◽  
Bente Johanne Vederhus ◽  
Tora Söderström Gaden ◽  
Annette K Brenner ◽  
Łucja Bieleninik ◽  
...  
Keyword(s):  
Longitudinal Study ◽  
Feasibility Study ◽  
Premature Infants ◽  
Neonatal Intensive Care ◽  
Perinatal Period ◽  
First Year ◽  
Structured Interviews ◽  
Post Discharge ◽  
Critical Realist ◽  
Musical Interaction

Abstract Premature infants and their parents experience significant stress during the perinatal period. Music therapy (MT) may support maternal–infant bonding during this critical period, but studies measuring impact across the infant’s first year are lacking. This nonrandomized feasibility study used quantitative and qualitative methods within a critical realist perspective to evaluate the feasibility, acceptability, and suitability of the treatment arm of the Longitudinal Study of music Therapy’s Effectiveness for Premature infants and their caregivers (LongSTEP) (NCT03564184) trial with a Norwegian cohort (N = 3). Families were offered MT emphasizing parent-led infant-directed singing during neonatal intensive care unit (NICU) hospitalization and across 3 months post-discharge. We used inductive thematic analysis of semi-structured interviews with parents at discharge from NICU and at 3 months and analyzed quantitative variables descriptively. Findings indicate that: (1) parents of premature infants are willing to participate in MT research where parental voice is a main means of musical interaction; (2) parents are generally willing to engage in MT in NICU and post-discharge phases, finding it particularly interesting to note infant responsiveness and interaction over time; (3) parents seek information about the aims and specific processes involved in MT; (4) the selected self-reports are reasonable to complete; and (5) the Postpartum Bonding Questionnaire appears to be a suitable measure of impaired maternal–infant bonding. Parents reported that they were able to transfer resources honed during MT to parent–infant interactions outside MT and recognized parental voice as a central means of building relation with their infants. Results inform the implementation of a subsequent multinational trial that will address an important gap in knowledge.

Why Does He Do It? What Explanations Resonate During Counseling for Women in Understanding Their Partner’s Abuse?

2021 ◽  
pp. 088626052198985
Author(s):  
Sally Marsden ◽  
Cathy Humphreys ◽  
Kelsey Hegarty
Keyword(s):  
Partner Violence ◽  
Research Question ◽  
Critical Role ◽  
Mental Health Research ◽  
Individual Characteristics ◽  
Clinical Group ◽  
Structured Interviews ◽  
Women’S Perceptions ◽  
Ipv Perpetration ◽  
Insight Into

Intimate partner violence (IPV) is a complex and multifaceted problem gaining increasing attention within mental health research and practice. IPV explanations focus on both individual and systemic levels; however, it is increasingly acknowledged that a single level explanation may not be sufficient. The practices of clinical disciplines may, however, still privilege an explanation at one level over another, which will influence how they work with clients. It is likely that one such clinical group, psychologists, may play a critical role in helping victim-survivors to understand and explain their experiences of IPV. However, we were unable to find any studies focusing on women’s perceptions of psychologists’ role in this. Additionally, we know little about women victim-survivors’ perceptions of why their partners use IPV. To address these gaps, the research question for this study was: What explanations resonate during counseling for women in understanding their partner’s abuse? To explore this question, 20 women who had seen psychologists after experiencing IPV participated in semi-structured interviews. The interviews were analyzed using reflexive thematic analysis and three themes constructed from the data. The first two themes, narcissist description was helpful and not all bad all the time, showed that the women found it powerful in their healing processes when psychologists offered the opportunity to discuss their partners individual characteristics as explanations for their use of IPV. The third theme, structural explanations, showed that some of the women also reflected on wider structural contexts. Implications for clinical practice include the potential healing effect when practitioners can move along a continuum of explanation levels, covering both the inner and outer worlds. Implications for research into IPV perpetration are that women hold expertise and insight into individual perpetrators and could make valuable contributions to this field.

Today in Light of Yesterday: An Exploration of Workers’ Childhood Memories in the Context of Child Protection Practice

2021 ◽  
Author(s):  
Sean A R St. Jean ◽  
Brian Rasmussen ◽  
Judy Gillespie ◽  
Daniel Salhani
Keyword(s):  
Child Protection ◽  
Research Question ◽  
Childhood Adversity ◽  
Well Being ◽  
Childhood Memories ◽  
Structured Interviews ◽  
Child Protection Workers ◽  
Professional Experiences ◽  
Explorative Study ◽  
Parents And Children

Abstract Child protection workers are routinely faced with emotionally intense work, both personally and vicariously through the traumatic narratives and experiences of parents and children. What remains largely unknown is how child protection workers’ own childhood memories might influence the manner in which they experience and are affected by those narratives. The aim of this explorative study was to use Interpretive Phenomenological Analysis as a research methodology to answer the research question, ‘In what ways do social workers experience, and make sense of, their own childhood memories in the context of their child protection practice?’ Semi-structured interviews were conducted with eight child protection workers, aiming to understand their personal and professional experiences with regard to this question. The study found a relationship between various forms of childhood adversity and the presence of negative present-day triggers when participants were faced with practice scenarios that bore similarity to those experiences. Implications with regard to child protection worker well-being, countertransference and risk decision-making are discussed.

Barriers of Palliative Care in Neonatal Intensive Care Units

2016 ◽  
Vol 34 (3) ◽  
pp. 205-211 ◽  
Author(s):  
Mansooreh Azzizadeh Forouzi ◽  
Marjan Banazadeh ◽  
Jila Soltan Ahmadi ◽  
Farideh Razban
Keyword(s):  
Palliative Care ◽  
Organizational Culture ◽  
Intensive Care ◽  
Intensive Care Units ◽  
Neonatal Intensive Care ◽  
Attitude Scale ◽  
Neonatal Intensive Care Units ◽  
Cross Sectional ◽  
Neonatal Nurses ◽  
Eol Care

Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses’ attitude toward barriers in providing NPC in Southeast Iran. Method: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. Results: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of “insufficient resources” (3.42 ± 0.65) and “inappropriate personal and social attitudes” (2.33 ± 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of “inappropriate organizational culture” and/or “inadequate nursing proficiency.” Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). Conclusion: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants’ EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses.

Letter to the Editor

PEDIATRICS ◽  
1994 ◽  
Vol 93 (6) ◽  
pp. 1025-1026
Author(s):  
Helen Harrison
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Neonatal Intensive Care ◽  
Ethics Committees ◽  
Disability Rights ◽  
Considerable Time ◽  
Premature Babies ◽  
Support Organizations ◽  
Family Centered

The parents who drafted "The Principles For Family-Centered Neonatal Care"1 have all spent considerable time in the neonatal intensive care unit (NICU). Most of us are parents of two or more premature babies. We are familiar with NICU families of all backgrounds through our work in support organizations, disability rights groups, and ethics committees. Our university educations may have made us better able to understand and articulate the issues, but they did not significantly alter our experience in the NICU.

Big data and artificial intelligence for health system sustainability: The case of Veneto Region

2021 ◽  
pp. 31-52
Author(s):  
Grazia Dicuonzo ◽  
Francesca Donofrio ◽  
Antonio Fusco ◽  
Vittorio Dell’Atti
Keyword(s):  
Artificial Intelligence ◽  
Big Data ◽  
Healthcare System ◽  
Care Delivery ◽  
Research Question ◽  
Health Agency ◽  
Time Frame ◽  
Structured Interviews ◽  
Case Study Methodology ◽  
The Impact

This paper investigates the digitalization challenges facing the Italian healthcare system. The aim of the paper is to support healthcare organizations as they take advantage of the potential of big data and artificial intelligence (AI) to promote sustainable healthcare systems. Both the development of innovative processes in the management of health care activities and the introduction of healthcare forecasting systems are valuable resources for clinical and care activities and enable a more efficient use of inputs in essential-level care delivery. By examining an innovative project developed by the Regional Social Health Agency (ARSS) of Veneto, this study analyses the impact of big data and AI on the sustainability of a healthcare system. In order to answer the research question, we used a case study methodology. We conducted semi-structured interviews with key members of the organizational group involved in the case. The results show that the implementation of AI algorithms based on big data in healthcare both improves the interpretation and processing of data, and reduces the time frame necessary for clinical processes, having a positive effect on sustainability.

scholarly journals Too Expensive to Treat? Non-Treatment Decisions at the Margins of Viability

2018 ◽  
Vol 27 (3) ◽  
pp. 461-481
Author(s):  
Tatiana Flessas ◽  
Emily Jackson
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Neonatal Intensive Care Unit ◽  
Premature Infant ◽  
Neonatal Intensive Care ◽  
Cost Effective ◽  
Treatment Decisions ◽  
Educational Needs ◽  
The State ◽  
Premature Babies

Abstract This article seeks to challenge the assumption that it is legitimate to consider the costs of premature babies’ future social and educational needs when deciding what treatment, if any, to provide in the neonatal intensive care unit (NICU) . It questions the elision that is made between the claim that a particular treatment is insufficiently cost-effective and the claim that a person will be a burden on the state in the future. It discusses a series of common misunderstandings about how treatment decisions are taken in the NICU and concludes by suggesting that the claim that premature babies are too expensive to treat may depend upon regarding a premature infant as if she were not yet a person, with rights and interests of her own.

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