scholarly journals Ethical challenges in home mechanical ventilation: A secondary analysis

2011 ◽  
Vol 19 (2) ◽  
pp. 233-244 ◽  
Author(s):  
Knut Dybwik ◽  
Erik Waage Nielsen ◽  
Berit Støre Brinchmann
Keyword(s):  
Mechanical Ventilation ◽  
Healthcare Professionals ◽  
Secondary Analysis ◽  
Healthcare Services ◽  
Community Health Services ◽  
Ethical Challenges ◽  
Home Mechanical Ventilation ◽  
Her Family ◽  
The Family

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family.

scholarly journals How to improve the quality of care for people on home mechanical ventilation from the perspective of healthcare professionals: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Hanna Klingshirn ◽  
Laura Gerken ◽  
Katharina Hofmann ◽  
Peter Ulrich Heuschmann ◽  
Kirsten Haas ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Intensive Care ◽  
Quality Of Care ◽  
Service Delivery ◽  
Integrated Care ◽  
Healthcare Professionals ◽  
Home Mechanical Ventilation ◽  
Care Structure ◽  
Quality Framework

Abstract Background The rapid increase in the use of home mechanical ventilation (HMV) for people with chronic respiratory failure poses extreme challenges for the healthcare system. People on HMV have complex care needs and require support from an interprofessional team. In Germany, HMV is criticised for inadequate quality standards, particularly in outpatient intensive care practice. The objective of this study was to describe the quality of care for people on outpatient HMV in Germany, Bavaria and provide recommendations for improvement from the perspective of healthcare professionals (HCPs). Methods Semi-structured qualitative telephone interviews with HCPs (i.e., nurses, equipment providers, therapists, and physicians) were analysed using the framework method. The quality framework of Health Improvement Scotland (HIS), which aims to improve the quality of person-centred care, was used to build a deductive analysis matrix. The framework includes the three key areas: (1) Outcomes and impact, (2) Service delivery, and (3) Vision and leadership. The domains (meta-codes) and quality indicators (sub-codes) of the quality framework were used for deductive coding. Results Overall, 87 HCPs (51 female, mean age of 44.3 years, mean professional experience in HMV of 9.4 years) were interviewed (mean duration of 31 min). There was a complex interaction between the existing health care system (Outcomes and impact, 955 meaning units), the delivery of outpatient intensive care (Service delivery, 939 meaning units), and improvement-focused leadership (Vision and leadership, 70 meaning units) that influenced the quality of care for people on HMV. The main barriers were an acceleration in transition management, a neglect of weaning potential, a shortage of qualified professionals and missing quality criteria. The central recommendations for promoting person-centred care were training and supervision of staff and an inspiring leadership. An integrated care structure supporting medical home visits and outpatient rehabilitation should be developed. Conclusion This study describes a heterogeneous and partly deficient care situation for people on HMV, but demonstrates that high quality care is possible if person-centred care is successfully implemented in all areas of service provision. The recommendations of this study could inform the development of a person-centred integrated care structure for people on HMV.

scholarly journals Home Mechanical Ventilation: A Patient’s Perspective Survey Study

2021 ◽  
Vol 18 (8) ◽  
pp. 4048
Author(s):  
Magdalena Kwiatosz-Muc ◽  
Bożena Kopacz
Keyword(s):  
Health Care ◽  
Mechanical Ventilation ◽  
Alternative Methods ◽  
Survey Study ◽  
Home Mechanical Ventilation ◽  
Patient’S Satisfaction ◽  
Satisfaction Index ◽  
Number Of Patients ◽  
The Difference

Background: An increasing number of patients included in home mechanical ventilation (HMV) care has been under observation for many years. The study aimed to assess the patients opinion concerning the expected and perceived quality of care in an HMV system and a patient’s satisfaction with care. Methods: In 2017, patients treated with HMV were surveyed in Poland with the modified SERVQUAL questionnaire. Results: One hundred correctly completed surveys were analyzed. Patient Satisfaction Index was high. In every examined area, the expectations were statistically significant larger than the perception of the services. The biggest gap was in the tangibility dimension and the smallest gap was in the empathy dimension. Perceived respect and understanding for a patient’s needs are close to the expectations. Conclusions: The level of satisfaction with health care among patients treated with HMV in majority of investigated components is high. Moreover, the difference between perceived and expected quality of health care in the HMV system was relatively small in the opinion of the patients themselves. Further investigations with alternative methods are needed.

scholarly journals PENDIDIKAN AGAMA ISLAM INDONESIA SEBAGAI SUBSISTEM PENDIDIKAN NASIONAL

2017 ◽  
Vol 4 (2) ◽  
Author(s):  
Masthu Mastuhu
Keyword(s):  
Human Resources ◽  
Family System ◽  
Islamic Education ◽  
Educational Institutions ◽  
Social Changes ◽  
Her Family ◽  
National Education ◽  
The Family ◽  
The Ideal

It is necessary for Islamic educational institutions to have the power of changing themselves to be able to take part in determining the ideal and success of national education. Precisely, today, Islamic educational sys­tem is perceived weak and powerless in the dynamic of social changes have been occurring in the society. Even, this situation, it is frequently assumed as the burden of national education. Why can it be so? Aren't Islamic educational providers are also referring to the only one Law, that is, Law Number 20 year 2003 regarding National Educational System? What is wrong with Islamic education ? How is the quality of human resources of these providers? This article tries to answer those questions. This article also deals with analogue of Islamic Education as a subsystem of national education with family system in Islam. Fam­ily is a system. Child is a subsystem of the family. The more the child is matured and independent the better his/her family is.

scholarly journals Socio-cultural aspects of type 1 diabetes in Egypt: Where are we and where do we need to be?

2013 ◽  
Vol 01 (02) ◽  
pp. 063-065
Author(s):  
Hanan Aly
Keyword(s):  
Type 1 Diabetes ◽  
Children And Adolescents ◽  
Financial Burden ◽  
Her Family ◽  
Positive Communication ◽  
Cultural Aspects ◽  
The Family ◽  
Diabetic Individual

AbstractSocio-cultural factors play a pivotal role in the control of type 1 diabetes in children and adolescents, especially in developing countries like Egypt. The financial burden of this chronic illness, together with the modulations needed in lifestyle affect the family and school dynamics, adding further stress on the diabetic individual and his/her family. The key to improved outcome (not only in terms of glycemic control but also quality of life) has two arms. The first one is having a diabetes team with a psychologist skilled in this area for clear and positive communication with both the family and school from the time of diagnosis. The second one is the implementation of government laws to enforce the rights of diabetic children and adolescents.

scholarly journals Psychological Resilience of Healthcare Professionals During COVID-19 Pandemic

2020 ◽  
pp. 003329412096547 ◽  
Author(s):  
Faruk Bozdağ ◽  
Naif Ergün
Keyword(s):  
Life Satisfaction ◽  
Healthcare Workers ◽  
Positive Emotions ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Public Health Issue ◽  
Psychological Resilience ◽  
Quality Of Sleep ◽  
Emotional Resilience

The COVID-19 pandemic as a public health issue has spread to the rest of the world. Although the wellbeing and emotional resilience of healthcare professionals are key components of continuing healthcare services during the COVID-19 pandemic, healthcare professionals have been observed in this period to experience serious psychological problems and to be at risk in terms of mental health. Therefore, this study aims to probe psychological resilience of healthcare workers. The findings of this study showed that in order to raise psychological resilience of healthcare professionals working during the COVID-19 pandemic their quality of sleep, positive emotions and life satisfaction need to be enhanced. Psychological resilience levels of healthcare workers in their later years were found to be higher. Doctors constitute the group with the lowest levels of psychological resilience among healthcare workers. The current study is considered to have contributed to the literature in this regard. Primary needs such as sleep which are determinants of quality of life, life satisfaction and psychological resilience should be met.

Siblings’ Lived Experiences of Having a Brother or Sister With Home Mechanical Ventilation: A Phenomenological Hermeneutical Study

2019 ◽  
Vol 25 (3) ◽  
pp. 469-492 ◽  
Author(s):  
Åsa Israelsson-Skogsberg ◽  
Agneta Markström ◽  
Katja Laakso ◽  
Lena Hedén ◽  
Berit Lindahl
Keyword(s):  
Mechanical Ventilation ◽  
Life Experiences ◽  
Home Mechanical Ventilation ◽  
Life Situation ◽  
Number Of Children ◽  
The Past ◽  
Self Confidence ◽  
The Family ◽  
The Everyday ◽  
Sibling Family

Over the past few decades, there has been an increase in the number of children receiving home mechanical ventilation (HMV), and in many ways, families have taken responsibility for the required advanced homecare, which has placed considerable time demands on the family unit. Little is known about the life situation of the siblings of HMV-assisted children; their own voices and an insider perspective are missing. The aim of this study was to illuminate the everyday life experiences of siblings of HMV-assisted children. Data were obtained via interviews with 10 siblings with a median age of 9 years. Data were analyzed using a phenomenological hermeneutical method inspired by the French philosopher Ricoeur. Four themes emerged, all of which suggest that a complex and profound intertwined sibling bond develops that links the past, present, and future. The findings of this study provide valuable information from an insider’s perspective about the meaning of having an HMV-assisted sibling. Family-focused care with particular attention and support for siblings of HMV-assisted children can encourage the development of internal strengths, self-confidence, and resilience.

scholarly journals Pravo na palijativnu skrb za djecu u Republici Hrvatskoj

2020 ◽  
Vol 55 (2) ◽  
pp. 82-91
Author(s):  
Marina Milić Babić ◽  
Marina Hranj
Keyword(s):  
Palliative Care ◽  
Right To Health ◽  
Human Right ◽  
Her Family ◽  
Right To Health Care ◽  
Starting Point ◽  
The Family ◽  
The Republic ◽  
The Right

Palliative care for children means active, complete care on physical, psychological, social and spiritual levels, and it includes collaboration and active work with the family. Palliative care for children lasts during the period of illness and continues after the death of the child in the form of expert assistance to the family in their grief. Such care follows the principles of individual, holistic, transdisciplinary and biopsychosocial-spiritual approaches that come together in promoting the quality of life of a child and his or her family. Numerous legal sources are the starting point for defining palliative care for children as a fundamental human right to health care, as well as for defining basic actions within this fundamental right. The right to palliative care includes rights from different systems, and collaboration and linking of different disciplines are needed in order to meet the needs of the child and his family. The aim of this paper is to present crucial knowledge in the field of palliative care for children and to examine how this right is implemented and legally regulated in the Republic of Croatia.

scholarly journals Validation of the Hungarian version of the SRI Questionnaire

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Luca Valko ◽  
Szabolcs Baglyas ◽  
Laszlo Kunos ◽  
Attila Terray-Horvath ◽  
Andras Lorx ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mechanical Ventilation ◽  
Respiratory Failure ◽  
Chronic Respiratory Failure ◽  
Life Questionnaire ◽  
Home Mechanical Ventilation ◽  
Life Tool ◽  
Sf 36 ◽  
Hungarian Version

Abstract Background Home mechanical ventilation is a reliable treatment for patients suffering from chronic respiratory failure, improving survival and quality of life. Prevalence has been increasing worldwide as a result of evolving technical possibilities, telemedicine and improving national guidelines. Projects to establish a national guideline and registry for patients treated with home mechanical ventilation are currently under way in Hungary and our aim was to validate a quality of life questionnaire suited for evaluation and follow up in this specific patient group. The Severe Respiratory Insufficiency Questionnaire (SRI) is a quality of life tool designed to evaluate patients receiving home mechanical ventilation and has been validated both in patient groups receiving invasive and noninvasive ventilation. Methods The Hungarian version of the SRI was created using the translation-backtranslation method, which was then tested for validity, viability and reliability in a cohort involving patients from three centers, receiving long-term home mechanical ventilation for chronic respiratory failure through an invasive or noninvasive interface. Patient data was collected (demographic data, lung function test, arterial blood gas, ventilation settings) and quality of life was measured with the previously validated SF-36 and newly created Hungarian SRI Questionnaires at two time points. Results One hundred four patients receiving home mechanical ventilation were enrolled. The time to complete the SRI Questionnaire was 8.6 (±3.1) minutes, 69.2% questionnaires were self-administered. Exploratory factor analysis explained 73.8% of the variance of the questionnaire, but resulted in 13 scales. We found correlations between the SRI subscale scores to corresponding scales of the previously validated general quality of life survey SF-36. The Cronbach alpha coefficient was 0.928 for the Summary Scale of the SRI Questionnaire, proving high internal consistency. Reproducibility was high for most scales, resulting in a high overall correlation for the summary score (0.877, p < 0.001). Conclusions The Hungarian version of the SRI Questionnaire is a viable, valid, reliable and reproduceable quality of life tool applicable for patients treated with home mechanical ventilation.

Dementia 7. When dementia is diagnosed, supporting the person and family caregivers

2020 ◽  
Vol 14 (4) ◽  
pp. 178-184
Author(s):  
Linda Nazarko
Keyword(s):  
End Of Life Care ◽  
Progressive Disease ◽  
World Health ◽  
Her Family ◽  
Learning Capacity ◽  
The Family ◽  
Health Organization ◽  
Person With Dementia ◽  
The Impact

The impact of a dementia diagnosis can be devastating to the person with dementia and his or her family. The person and their loved ones have been informed that the person has a progressive disease that affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement ( World Health Organization (WHO), 2017 ). It is often thought of as a diagnosis of despair; however, if managed well, the diagnosis is an opportunity to enable the person to experience the best possible quality of life and to inform the family of his or her wishes in relation to end-of-life care.

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