scholarly journals Parents’ Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey

2019 ◽  
Vol 34 (4) ◽  
pp. 210-215 ◽  
Author(s):  
Kim Beernaert ◽  
Malin Lövgren ◽  
Jørgen Jeppesen ◽  
Ulla Werlauff ◽  
Jes Rahbek ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Spinal Muscular Atrophy ◽  
Population Survey ◽  
Muscular Atrophy ◽  
Treatment Options ◽  
Care Staff ◽  
Health Care Staff ◽  
Bereaved Parents ◽  
Advance Care

Objective: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. Study Design: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care. Results: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled. Conclusions: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.

Children’s Participation in the Decision-Making Process During Hospitalization: an observational study

2002 ◽  
Vol 9 (6) ◽  
pp. 583-598 ◽  
Author(s):  
Ingrid Runeson ◽  
Inger Hallström ◽  
Gunnel Elander ◽  
Göran Hermerén
Keyword(s):  
Health Care ◽  
Decision Making ◽  
University Hospital ◽  
Care Staff ◽  
Health Care Staff ◽  
Staff Members ◽  
Children’S Participation ◽  
Decision Making Processes ◽  
Children's Participation ◽  
Degree Of Participation

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care.

Bringing an entrepreneurial mindset to health-care: a new tool for better outcomes

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Laurence Murray Gillin ◽  
Lois Marjorie Hazelton
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Professional Practice ◽  
Health Care Industry ◽  
Care Staff ◽  
Health Care Staff ◽  
Content Type ◽  
Care Industry ◽  
Entrepreneurial Behaviour

Purpose The purpose of this paper is to consider the value of an industry ecosystem in providing context for both identifying and evaluating organisation opportunities and related entrepreneurial behaviour for future strategic growth by reference to a case study in the health-care industry. Using a validated entrepreneurship mindset audit instrument, an assessment is made of the leadership, decision-making, behaviour and awareness dimensions of professional practice health-care staff to create the internal culture that fosters an entrepreneurial orientated organisation that can deliver effective innovation for satisfied users of health-care services. Design/methodology/approach This case study examines the distinctive dimensions of entrepreneurial mindset – leadership, decision-making, behaviour and awareness – within a practice-based health-care (nursing) ecosystem and how these dimensions impact organisation performance throughout the health-care industry. Findings This study validates research findings that entrepreneurial leadership encourages entrepreneurial behaviour and an entrepreneurial culture supports the development of innovations. Opportunities for such cultural behaviour are best understood by measuring the staff’s and leaders’ “entrepreneurial mindset”. Research limitations/implications Generalising results from this case study requires caution. The positive outcome from the professional practice examples, and their strong association with impactful entrepreneurial mindset values on service delivery, requires further evaluation. Practical implications Using an entrepreneurial mindset audit to assess organisation’s cultural behaviour enables management to identify factors fostering or inhibiting entrepreneurial activity and to devise interventions to improve strategic direction. Originality/value Entrepreneurial mindset is not a new concept, but adding the critical significance of spiritual awareness to creative entrepreneur behaviour, together with a visioning map, adds both value and understanding to enhance organisation performance.

The Hospice Decision: Psychosocial Facilitators and Barriers

1997 ◽  
Vol 35 (2) ◽  
pp. 193-217 ◽  
Author(s):  
Dennis P. McNeilly ◽  
Kristine Hillary
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Home Health Care ◽  
Hospice Care ◽  
Care Patient ◽  
Home Health ◽  
Care Staff ◽  
Future Research ◽  
Health Care Staff ◽  
Hospice Patient

This study examined the social and contextual process of discussion and decision making around the use of the hospice in order to clarify the facilitative and obstructive aspects to hospice patient entry. Four participants groups of physicians, hospice and home health care patient family survivors, and hospice and home health care staff, completed four complementary mail surveys of their discussions and decision process for hospice care. Non-parametric analysis of the data reaffirmed the central and key role of the physician as the expected initiator and gatekeeper of the hospice discussion and decision-making process. Physicians were found generally aware of hospice and to have discussed hospice with their patients, though that awareness and the frequency of hospice patient discussions varied by the type of medical practice. Patient family survivors were unaware of hospice prior to the terminal illness, with a majority of hospice patient family survivors receiving their initial hospice information from relatives. Implications of these results and issues for future research are identified.

scholarly journals Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making

2016 ◽  
Vol 31 (7) ◽  
pp. 617-624 ◽  
Author(s):  
Maureen A Coombs ◽  
Roses Parker ◽  
Kay de Vries
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Qualitative Study ◽  
End Of Life ◽  
Care Transitions ◽  
Care Staff ◽  
Health Care Staff ◽  
Field Observations ◽  
Transitions In Care ◽  
Managing Risk

Background: Increasing importance is being placed on the coordination of services at the end of life. Aim: To describe decision-making processes that influence transitions in care when approaching the end of life. Design: Qualitative study using field observations and longitudinal semi-structured interviews. Setting/participants: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3–4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken. Findings: Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making ‘safe’ discharge options informed hospital discharge decisions. Conclusion: While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.

scholarly journals Gradually Disengaging: Parent–Health care Provider Relationships After a Child’s Death in the Pediatric Intensive Care Unit

2018 ◽  
Vol 24 (3) ◽  
pp. 470-492 ◽  
Author(s):  
Ashleigh E. Butler ◽  
Helen Hall ◽  
Beverley Copnell
Keyword(s):  
Health Care ◽  
Intensive Care Unit ◽  
Intensive Care ◽  
Pediatric Intensive Care ◽  
Study Data ◽  
Care Staff ◽  
Constructivist Grounded Theory ◽  
Health Care Staff ◽  
Bereaved Parents ◽  
Child's Death

When a child dies in the intensive care unit, many bereaved parents want relationships with their child’s health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents’ bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement.

scholarly journals ReCOV: recovery and rehabilitation during and after COVID-19 – a study protocol of a longitudinal observational study on patients, next of kin and health care staff

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
E. Rydwik ◽  
L. Anmyr ◽  
M. Regardt ◽  
A. McAllister ◽  
R. Zarenoe ◽  
...  
Keyword(s):  
Health Care ◽  
Psychosocial Support ◽  
Care Staff ◽  
Psychological Wellbeing ◽  
Health Care Staff ◽  
Post Traumatic Stress ◽  
Next Of Kin ◽  
Related Quality ◽  
Long Term Consequences

Abstract Background The knowledge of the long-term consequences of covid-19 is limited. In patients, symptoms such as fatigue, decreased physical, psychological, and cognitive function, and nutritional problems have been reported. How the disease has affected next of kin, as well as staff involved in the care of patients with covid-19, is also largely unknown. The overall aim of this study is therefore three-fold: (1) to describe and evaluate predictors of patient recovery, the type of rehabilitation received and patients’ experiences of specialized rehabilitation following COVID-19 infection; (2) to study how next of kin experienced the hospital care of their relative and their experiences of the psychosocial support they received as well as their psychological wellbeing; (3) to describe experiences of caring for patients with COVID-19 and evaluate psychological wellbeing, coping mechanisms and predictors for development of psychological distress over time in health care staff. Methods This observational longitudinal study consists of three cohorts; patients, next of kin, and health care staff. The assessments for the patients consist of physical tests (lung function, muscle strength, physical capacity) and questionnaires (communication and swallowing, nutritional status, hearing, activities of daily living, physical activity, fatigue, cognition) longitudinally at 3, 6 and 12 months. Patient records auditing (care, rehabilitation) will be done retrospectively at 12 months. Patients (3, 6 and 12 months), next of kin (6 months) and health care staff (baseline, 3, 6, 9 and 12 months) will receive questionnaires regarding, health-related quality of life, depression, anxiety, sleeping disorders, and post-traumatic stress. Staff will also answer questionnaires about burnout and coping strategies. Interviews will be conducted in all three cohorts. Discussion This study will be able to answer different research questions from a quantitative and qualitative perspective, by describing and evaluating long-term consequences and their associations with recovery, as well as exploring patients’, next of kins’ and staffs’ views and experiences of the disease and its consequences. This will form a base for a deeper and better understanding of the consequences of the disease from different perspectives as well as helping the society to better prepare for a future pandemic.

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