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 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.

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 Enhancing Quality of Life through Singing: A Music Therapy Study into Huntington’s Disease

2021 ◽  
Author(s):  
◽  
Sacha Van Beek
Keyword(s):  
Quality Of Life ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Research Question ◽  
Data Sources ◽  
Residential Home ◽  
Structured Interviews ◽  
Clinical Notes

<p>This mixed methods study investigated whether the process of singing in music therapy can enhance the quality of life of patients with Huntington’s Disease. It took place in New Zealand, over a two-month period, in a residential home dedicated to the rare condition. The research involved five participants: two residents diagnosed with Huntington’s Disease who participated in individual music therapy sessions, two caregivers at the facility, and the music therapy student (MTS). The study endeavoured to answer the research question by triangulating three data sources. Data sources included; the MTS’s clinical notes of the sessions, semi-structured interviews with the staff members and a short questionnaire developed by the researcher which involved gathering the personal self-rated scores from the resident participants. A thematic analysis was undertaken with the two text-based data sources (clinical notes and interview transcripts) and the questionnaire scores were collated for each case. However the questionnaire results were deemed predominantly invalid. The triangulation of findings found that participants observed the process of singing had contributed to areas of quality of life for both of the residents, by providing them with: 1) a stimulus for socialisation; 2) emotional and psychological support; and 3) support for their remaining cognitive and physical ability. The outcome of the study found that the process of singing stimulated the resident participants in two contrasting ways and their motivation to participate was not only the singing itself but also the music in the session, instrumental play and the relationship between the residents and the MTS. From the perspectives of the participants consulted in this study it was concluded that the results from this research added some rich detail to the current literature available. Findings also concluded that residents, caregivers and the MTS herself valued the process of singing in music therapy and regarded it as an important intervention when seeking to preserve the quality of life of Huntington’s patients.</p>

scholarly journals Enhancing Quality of Life through Singing: A Music Therapy Study into Huntington’s Disease

2021 ◽  
Author(s):  
◽  
Sacha Van Beek
Keyword(s):  
Quality Of Life ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Research Question ◽  
Data Sources ◽  
Residential Home ◽  
Structured Interviews ◽  
Clinical Notes

<p>This mixed methods study investigated whether the process of singing in music therapy can enhance the quality of life of patients with Huntington’s Disease. It took place in New Zealand, over a two-month period, in a residential home dedicated to the rare condition. The research involved five participants: two residents diagnosed with Huntington’s Disease who participated in individual music therapy sessions, two caregivers at the facility, and the music therapy student (MTS). The study endeavoured to answer the research question by triangulating three data sources. Data sources included; the MTS’s clinical notes of the sessions, semi-structured interviews with the staff members and a short questionnaire developed by the researcher which involved gathering the personal self-rated scores from the resident participants. A thematic analysis was undertaken with the two text-based data sources (clinical notes and interview transcripts) and the questionnaire scores were collated for each case. However the questionnaire results were deemed predominantly invalid. The triangulation of findings found that participants observed the process of singing had contributed to areas of quality of life for both of the residents, by providing them with: 1) a stimulus for socialisation; 2) emotional and psychological support; and 3) support for their remaining cognitive and physical ability. The outcome of the study found that the process of singing stimulated the resident participants in two contrasting ways and their motivation to participate was not only the singing itself but also the music in the session, instrumental play and the relationship between the residents and the MTS. From the perspectives of the participants consulted in this study it was concluded that the results from this research added some rich detail to the current literature available. Findings also concluded that residents, caregivers and the MTS herself valued the process of singing in music therapy and regarded it as an important intervention when seeking to preserve the quality of life of Huntington’s patients.</p>

scholarly journals 4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

2020 ◽  
Vol 4 (s1) ◽  
pp. 27-27
Author(s):  
Rosa Roman-Oyola ◽  
Anita Bundy ◽  
Eida Castro ◽  
Osiris Castrillo
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Depression Symptoms ◽  
Improve Quality ◽  
Structured Interviews ◽  
Yield Data ◽  
Implementation Phase ◽  
Coaching Intervention ◽  
Phase 1B

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

scholarly journals QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii175
Author(s):  
Deborah Forst ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Coping Skills ◽  
Malignant Gliomas ◽  
Anxiety Symptoms ◽  
Structured Interviews ◽  
Post Intervention ◽  
Clinically Significant ◽  
And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

scholarly journals Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson’s

2021 ◽  
pp. 089198872098890
Author(s):  
Angeliki Bogosian ◽  
Catherine S. Hurt ◽  
John V. Hindle ◽  
Lance M. McCracken ◽  
Debora A. Vasconcelos e Sa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Qualitative Interviews ◽  
Quality Adjusted Life Year ◽  
Secondary Outcome ◽  
Structured Interviews ◽  
Potential Cost ◽  
Mindfulness Intervention ◽  
Related Quality

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

An Examination of Partner Perceptions of Partner Rotation: Direct and Indirect Consequences to Audit Quality

2012 ◽  
Vol 31 (1) ◽  
pp. 97-114 ◽  
Author(s):  
Brian E. Daugherty ◽  
Denise Dickins ◽  
Richard C. Hatfield ◽  
Julia L. Higgs
Keyword(s):  
Quality Of Life ◽  
Audit Quality ◽  
Negative Impact ◽  
Survey Instrument ◽  
Unintended Consequence ◽  
Data Availability ◽  
Structured Interviews ◽  
Partner Perceptions ◽  
New Industry

SUMMARY Using structured interviews and surveys of practicing audit partners, this study examines their perceptions with regard to mandatory partner rotation and cooling-off periods, and how recently enacted, more stringent rules, may negatively impact auditors' quality of life to the detriment of audit quality. Results suggest rotation, in general, increases partners' workloads and the likelihood of relocation. Additionally, results suggest that in response to accelerated rotation (and an extended cooling-off period), partners would rather learn a new industry than relocate. Importantly, partners perceive audit quality suffers from retraining, but not from relocating. Thus these results suggest an indirect, negative impact, and unintended consequence, of accelerated rotation/extended cooling-off periods on audit quality. Data Availability: The survey instrument is available upon request. Individual audit partner responses are confidential.

scholarly journals “Kicking and Screaming” or “Gracefully Conceding”: Creative Nonfiction Stories of Aging With Multiple Sclerosis

2021 ◽  
pp. 104973232110098
Author(s):  
Emma V. Richardson ◽  
Robert W. Motl
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Older Adults ◽  
Knowledge Translation ◽  
Creative Nonfiction ◽  
Complex Phenomenon ◽  
Structured Interviews ◽  
Cognitive Dysfunctions ◽  
Positive Experiences

Aging with multiple sclerosis (MS) is a complex phenomenon. Some individuals report physical and cognitive dysfunctions regarding these combined experiences, whereas others report perceived improvements in quality of life. Beyond this, little is known regarding how people make sense of, and come to embody, negative or positive experiences of MS. Thus, our objectives were to (a) explore how people made sense of aging with MS and (b) present this in an artful, engaging, transformative way. To achieve this, we conducted 40 semi-structured interviews with older adults who had MS, analyzed data using pluralistic narrative analyses, and presented results through two creative nonfictions. We detail our process of creating the nonfictions before presenting the different stories of aging with MS, namely “Kicking and Screaming” and “Gracefully Conceding.” We then offer recommendations and implications for using these stories as knowledge translation devices, and further critique the limitations of these stories in practice.

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