Factors that influence user satisfaction: tracheotomised home mechanical ventilation users’ experiences

Dyrstad, Dagrunn Nåden; Hansen, Britt Sætre; Gundersen, Evy Margrethe

doi:10.1111/j.1365-2702.2012.04304.x

Cited by 17 publications

(87 citation statements)

References 19 publications

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“…The studies highlighted that in the beginning of living with a ventilator at home there is a need to rearrange and redefine the home in response to the new life situation . In addition to structural reorganisation, structural reorganisation, the home now becomes loaded with new and significant meanings and by becoming a workplace for HCPs and PCAs is transformed into a public environment .…”

Section: Resultsmentioning

confidence: 99%

“…The studies highlighted that in the beginning of living with a ventilator at home there is a need to rearrange and redefine the home in response to the new life situation (40)(41)(42)(43). In addition to structural reorganisation, structural reorganisation, the home now becomes loaded with new and significant meanings and by 'Between a rock and a hard place' was the core category that explained discrepancies between hospital and family expectations of adequate resources and participants feeling of having to answer to the health service, family and patient.…”

Section: Experiences Of Home and At-homenessmentioning

confidence: 99%

“…Ambiguous boundaries. Studies highlight the ambiguous role and physical boundaries experienced by HCPs/PCAs in the home and how these boundaries are not openly negotiated (20,23,33,43,47). This has been largely examined from the perspective of HCPs/PAs who describe the unclear role boundaries and relationships they experience with HMV users and whether their role could be constructed as that of being a friend, a guest or a worker/professional within the home setting (33,44,47,53).…”

Section: The Influence On Interpersonal Relationshipsmentioning

confidence: 99%

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When technology enters the home – a systematic and integrative review examining the influence of technology on the meaning of home

Lindahl

Kirk

2018

Scandinavian Caring Sciences

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Aim To analyse and synthesise the research that has investigated the experience of home in relation to home mechanical ventilation (HMV). Method Systematic integrative review. Four electronic databases (CINAHL, PubMed, Scopus and ISI Web of Knowledge) were searched between January 2010 and April 2017 as well as reference lists of included studies. Quantitative and qualitative studies meeting the inclusion criteria were critically appraised. Study findings were inductively analysed and synthesised using the integrative approach. Results Twenty‐one studies were included in the review. Two main themes emerged: home and at‐homeness and altered interpersonal relationships. The literature suggests that the technology alters the meaning of home through its structural and conceptual reconfiguration. Paradoxically, the space is experienced as both a home and a workplace which creates tensions and ambiguities for HMV users/families and care workers. HMV users and their families attempt to recreate a sense of home and identity while gaining control over space and decision‐making. Nevertheless, the home is seen as the preferred place to live and close bonds can develop between the different actors. Conclusions The literature suggests that the transformation of the meaning of home by the presence of technology and workers poses challenges that are often under‐recognised. Healthcare professionals and personal care assistants need preparation for the complexities of working in the home setting in addition to clinical aspects of caregiving. Home adaptations need to be carefully planned and include design principles that retain ‘at‐homeness’ while enabling the creation of a safe workplace.

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Section: Resultsmentioning

confidence: 99%

Section: Experiences Of Home and At-homenessmentioning

confidence: 99%

Section: The Influence On Interpersonal Relationshipsmentioning

confidence: 99%

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When technology enters the home – a systematic and integrative review examining the influence of technology on the meaning of home

Lindahl

Kirk

2018

Scandinavian Caring Sciences

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“…Even though some adults decide that life on a ventilator is not worth living, other adults have expressed the belief that continued life with ventilator assistance is meaningful. [15][16][17] These perspectives make it difficult to argue that ongoing life with a ventilator is clearly against a child' s interests. 3 We must also consider the question of interests related to the underlying developmental disability.…”

Section: Is Long-term Mechanical Ventilation In the Interests Of A Chmentioning

confidence: 99%

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Wilfond

2014

Pediatrics

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Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children’s interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family’s perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members’ lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

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“…Por último, la selección de la interfase también es un aspecto clave para el éxito de la VMD 97 , y la selección debería combinar preferencia del paciente y efectividad, si bien no hay estudios aleatorizados en VMD respecto a la preferencia del paciente 98,99 .…”

Section: Percepción Subjetiva Del Pacienteunclassified

Técnicas complementarias a la ventilación mecánica domiciliaria. Año SEPAR 2014

Chiner

Sancho-Chust

Landete

et al. 2014

Archivos de Bronconeumología

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Factors that influence user satisfaction: tracheotomised home mechanical ventilation users’ experiences

Abstract: There is a lack of knowledge among healthcare providers, thus tailored, high competence and guidelines are required.

Cited by 17 publications

References 19 publications

When technology enters the home – a systematic and integrative review examining the influence of technology on the meaning of home

When technology enters the home – a systematic and integrative review examining the influence of technology on the meaning of home

Tracheostomies and Assisted Ventilation in Children With Profound Disabilities: Navigating Family and Professional Values

Técnicas complementarias a la ventilación mecánica domiciliaria. Año SEPAR 2014

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