‘I’m almost never sick’: Everyday life experiences of children and young people with home mechanical ventilation

2018 ◽  
Vol 22 (1) ◽  
pp. 6-18 ◽  
Author(s):  
Åsa Israelsson-Skogsberg ◽  
Lena Hedén ◽  
Berit Lindahl ◽  
Katja Laakso
Keyword(s):  
Mechanical Ventilation ◽  
Young People ◽  
Everyday Life ◽  
Medical Technology ◽  
Life Experiences ◽  
Qualitative Content Analysis ◽  
Survival Rates ◽  
Home Mechanical Ventilation ◽  
Children And Young People ◽  
Home Support

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

‘The Best of Times, the Worst of Times’: Young People's Views of Care and Accommodation

2005 ◽  
Vol 29 (1) ◽  
pp. 8-17 ◽  
Author(s):  
Harriet Ward ◽  
Tricia Skuse ◽  
Emily R Munro
Keyword(s):  
Young People ◽  
Everyday Life ◽  
Life Experiences ◽  
Developmental Outcomes ◽  
Children And Young People ◽  
Homogenous Group ◽  
Looked After Children ◽  
Past Life ◽  
Children’S Views ◽  
Care System

There is much evidence of instability in the care system and poor developmental outcomes for looked after children, but looked after children are far from being a homogenous group. Their lives, needs and experiences vary immensely. Harriet Ward, Tricia Skuse and Emily R Munro present the findings from a recent study of children's views of the care system in England (Skuse and Ward, 2003). They explore what children and young people did and did not like about being looked after, why some found it a beneficial experience while others did not, and discuss the reasons for their largely positive responses. Ordinary features of everyday life that peers would usually take for granted, such as having someone to talk to or doing ordinary family things like going to the cinema, were identified as benefits of the care system. These views and the expectations of looked after children need to be considered in the context of their past life experiences.

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 Results of the home mechanical ventilation national program among adults in Chile between 2008 and 2017

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
César Maquilón ◽  
Mónica Antolini ◽  
Nicolás Valdés ◽  
Marianela Andrade ◽  
Krishnna Canales ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Survival Rates ◽  
Life Time ◽  
Invasive Ventilation ◽  
Home Mechanical Ventilation ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Program Characteristics ◽  
Hypoventilation Syndrome ◽  
Children's Program

Abstract Background Home mechanical ventilation (HMV) is a viable and effective strategy for patients with chronic respiratory failure (CRF). The Chilean Ministry of Health started a program for adults in 2008. Methods This study examined the following data from a prospective cohort of patients with CRF admitted to the national HMV program: characteristics, mode of admission, quality of life, time in the program and survival. Results A total of 1105 patients were included. The median age was 59 years (44–58). Women accounted for 58.1% of the sample. The average body mass index (BMI) was 34.9 (26–46) kg/m2. A total of 76.2% of patients started HMV in the stable chronic mode, while 23.8% initiated HMV in the acute mode. A total of 99 patients were transferred from the children's program. There were 1047 patients on non-invasive ventilation and 58 patients on invasive ventilation. The median baseline PaCO2 level was 58.2 (52–65) mmHg. The device usage time was 7.3 h/d (5.8–8.8), and the time in HMV was 21.6 (12.2–49.5) months. The diagnoses were COPD (35%), obesity hypoventilation syndrome (OHS; 23.9%), neuromuscular disease (NMD; 16.3%), non-cystic fibrosis bronchiectasis or tuberculosis (non-CF BC or TBC; 8.3%), scoliosis (5.9%) and amyotrophic lateral sclerosis (ALS; 5.24%). The baseline score on the Severe Respiratory Insufficiency questionnaire (SRI) was 47 (± 17.9) points and significantly improved over time. The lowest 1- and 3-year survival rates were observed in the ALS group, and the lowest 9-year survival rate was observed in the non-CF BC or TB and COPD groups. The best survival rates at 9 years were OHS, scoliosis and NMD. In 2017, there were 701 patients in the children's program and 722 in the adult´s program, with a prevalence of 10.4 per 100,000 inhabitants. Conclusion The most common diagnoses were COPD and OHS. The best survival was observed in patients with OHS, scoliosis and NMD. The SRI score improved significantly in the follow-up of patients with HMV. The prevalence of HMV was 10.4 per 100,000 inhabitants. Trial registration This study was approved by and registered at the ethics committee of North Metropolitan Health Service of Santiago, Chile (N° 018/2021).

scholarly journals Transnational families as seen thought the prism of the experiences of children growing up in them

2021 ◽  
Vol 45 (1) ◽  
pp. 125-136
Author(s):  
Katarzyna Nosek-Kozłowska
Keyword(s):  
Young People ◽  
Family Life ◽  
Life Experiences ◽  
Transnational Families ◽  
Growing Up ◽  
Family Experiences ◽  
Children And Young People ◽  
Trip Time ◽  
Transnational Family ◽  
Economic Migration

Economic migrations are a phenomenon that extends to many Polish families, causing changes in their structure and functioning. The effects of migration that affect the lives of children and young people brought up in transnational families seem to be particularly important. Children from transnational families have specific family experiences because they are related to the economic migration of one of the parents, which is associated with his longer absence. The motives for the trip, time of separation, and everyday life in each transnational family are different, therefore children from these families have various life experiences and create images of family life in various ways.

Exposure to sexual harm is now a ‘normal part’ of life

2019 ◽  
Vol 14 (10) ◽  
pp. 486-487
Author(s):  
Pete Henshaw
Keyword(s):  
Sexual Abuse ◽  
Child Sexual Abuse ◽  
Young People ◽  
Everyday Life ◽  
Children And Young People ◽  
Normal Part ◽  
Independent Inquiry

Children and young people are coming to accept that exposure to online sexual harm and receiving and being asked for explicit images is now a part of everyday life. Pete Henshaw takes a look at the latest report from the Independent Inquiry into Child Sexual Abuse.

‘Making known’ or ‘counting our children’?

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Lindsey Reynolds
Keyword(s):  
South Africa ◽  
Young People ◽  
Global Health ◽  
Complex Networks ◽  
Everyday Life ◽  
Life Experiences ◽  
Kwazulu Natal ◽  
Contemporary Life ◽  
Provision Of Services ◽  
Modes Of Engagement

The article explores how regimes of documentation, quantification, evidence, and accountability have come to shape encounters between program implementers, researchers, young people, and caregivers in one locality in northeastern KwaZulu-Natal, South Africa. Rather than simply critiquing the overemphasis on counting and accounting in global health, I examine the effects of these processes on the provision of services to young people and families. For those whose lives had been systematically excluded from view, processes of form filling could in fact be construed as services in themselves. Further, encounters structured around form filling could work to facilitate other modes of engagement, centered on the construction of forms of recognition, reciprocity, and obligation, and mediated by complex networks of patronage and dependence. Drawing on these findings, the article describes how local histories and contemporary life experiences can shape the ways in which technologies of global health are taken up, and their effects on everyday life.

scholarly journals Juventude no cotidiano de Terreiros no Rio Grande do Norte: empoderamento e compromisso político e de fé./

2021 ◽  
Vol 6 (2) ◽  
Author(s):  
Geraldo Barboza de Oliveira Junior
Keyword(s):  
Young People ◽  
Everyday Life ◽  
Rio Grande ◽  
The State ◽  
Religious Communities ◽  
Image Editing ◽  
Political Discussion ◽  
Policy Decisions ◽  
Children And Young People ◽  
The Future

Sinopse:“A juventude de hoje é o futuro de amanhã do Axé... tem que ter compromisso, sim. Mas, também, tem que ter amor e felicidade; e isto é mais forte nos jovens e nas crianças”. Esta frase de Mãe Ruth de Nanã, do Candomblé Jitaloyá no município de Ceará-Mirim, estado do Rio Grande do Norte, aponta para uma situação, cada vez mais, comum nos terreiros da região: a presença de crianças e jovens sendo iniciados na religião.Esta nova configuração tem reflexos na visibilidade dos terreiros em espaços de decisões políticas; particularmente, em espaços de discussão política. Nessa esteira, vão sendo encaminhadas, também, as questões de gênero, etnicidade, racismo e intolerâncias.É esta juventude que vai às ruas levantando a bandeira do Axé no Estado do Rio Grande do Norte. Este ensaio mostra aspectos do cotidiano, alheio aos momentos de cerimônias e rituais, nos quais a Juventude de Axé se coloca como protagonista de sua história.Synopsis:"Today's youth are the future of tomorrow's Axe ... have to have commitment, yes. But also you have to have love and happiness; and this is stronger in young people and children. " This phrase of Mother Ruth Nanã, Candomblé Jitaloyá in the municipality of Ceará Mirim, state of Rio Grande do Norte, points to a situation increasingly common in the yards of the region: the presence of children and young people being initiated into the religion .This new configuration is reflected in the visibility of religious communities in areas of policy decisions; particularly in areas of political discussion. On this track, they are being sent, too, gender, ethnicity, racism and intolerance.It is this youth that takes to the streets raising the flag Axe in the state of Rio Grande do Norte. This test shows aspects of everyday life, oblivious to moments of ceremonies and rituals in which Axe of Youth stands as the protagonist of his story.Palavras-chave:Juventude, candomblé, Axé, políticas sociais.Key-words:Youth, Candomblé, Axe, social policies.Ficha técnica:Autor: Geraldo Barboza de Oliveira JuniorFotografias:Geraldo Barboza de Oliveira JuniorDireção, Edição de Imagem e Texto: Geraldo Barboza de Oliveira JuniorCredits:Author:Geraldo Barboza de Oliveira JuniorPhotographs:Geraldo Barboza de Oliveira JuniorDirection, image editing and text: Geraldo Barboza de Oliveira Junior

scholarly journals Exploring Barriers to Participation in Pediatric Rehabilitation: Voices of Children and Young People with Disabilities, Parents, and Professionals

2021 ◽  
Vol 18 (19) ◽  
pp. 10119
Author(s):  
Britta Teleman ◽  
Elin Vinblad ◽  
Petra Svedberg ◽  
Jens M. Nygren ◽  
Ingrid Larsson
Keyword(s):  
Young People ◽  
Qualitative Content Analysis ◽  
People With Disabilities ◽  
Parental Presence ◽  
Pediatric Rehabilitation ◽  
Children And Young People ◽  
Barriers To Participation ◽  
Low Level ◽  
Individual Interviews ◽  
Self Confidence

In order to develop suitable support for participation in pediatric rehabilitation, it is important to understand what barriers need to be bridged from the perspectives of both children and adults. The aim of this study was to explore barriers to participation in pediatric rehabilitation services, according to children and young people with disabilities, parents to children with disabilities, and professionals. Data was collected in individual interviews (n = 48) and focus groups (n = 8), which were analyzed with qualitative content analysis to extract barriers to participation. Identified barriers include three categories: (1) insufficient access (controlling adults, adult-centered healthcare); (2) insufficient trust (low level of trust in adults, low level of trust in children, low self-confidence in children); and (3) insufficient involvement (norms of non-participation, low level of commitment in children). The participant groups had divergent conceptions of where and how barriers originate, and for what situations child participation is appropriate. Adult-centered healthcare and parental presence were described as barriers by all participant groups. Understanding differences in the perceptions of barriers and their origins is crucial when striving to change norms of non-participation. The findings can inform the development of new support tools and participatory formats in pediatric rehabilitation.

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