Life with home mechanical ventilation for young men with Duchenne muscular dystrophy

Dreyer, Pia; Steffensen, Birgit F.; Pedersen, Birthe D.

doi:10.1111/j.1365-2648.2009.05233.x

Cited by 39 publications

(81 citation statements)

References 31 publications

(66 reference statements)

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“…Audit trails were created because this program allows transparency in the process from raw data (interview transcripts) to comprehensive understanding to increase credibility and reliability of the findings (Dreyer, Steffensen, & Pedersen, 2010). Two researchers (K. P. and M.…”

Section: Data Collection and Analysismentioning

confidence: 99%

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Piil

Juhler

Jakobsen

et al. 2015

Journal of Neuroscience Nursing

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The individual and sometimes opposing preferences among patients and their caregivers for prognostic information is a chosen strategy that supports individual needs in managing the HGG trajectory. Patients and caregivers experience a feeling of solidarity, from which shared hope arises; however, this hope needs to be supported by healthcare professionals. Driven by hope, they seek to optimize the therapeutic effect of the oncological treatments by being engaged together in health promoting activities. As symptoms progressed, the need for information and guidance regarding symptoms and supportive care interventions became evident. Caregivers play a significant supporting role for the patients and need special support themselves and practical assistance especially when symptoms progress. Finally, there is a need for rehabilitation programs that target the cognitive ability of the patients to participate actively.

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Section: Data Collection and Analysismentioning

confidence: 99%

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Piil

Juhler

Jakobsen

et al. 2015

Journal of Neuroscience Nursing

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“…Today medically fragile individuals, who are often dependent on technology, are cared for at home more frequently than in the past [4,5]. When patients choose home care, they often value it highly, because it increases their chances of living a close-to-normal life despite their considerable need of care [6-8]. However, patients who receive home care due to their large needs may still suffer when they experience the loss of physical functions or changes in self-integrity [9]; such experiences can lead them to develop different strategies to cope with their difficult life situation [10].…”

Section: Introductionmentioning

confidence: 99%

Patients in 24-hour home care striving for control and safety

et al. 2012

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BackgroundThis article concerns Swedish patients receiving 24-hour home care from health care assistants (HC assistants) employed by the municipality. Home care is a complex interactive process involving the patient, family, HC assistants as well as professional care providers. Previous studies exploring patient perspectives on home care have been based mainly on patient interviews. In contrast, the present study took a broad perspective on patients’ experiences and thoughts by combining field observations on care situations with patient and HC assistant interviews. The aim of the study presented in this article was to promote a new and broadened understanding of patients receiving 24-hour home care by constructing a theoretical model to illuminate their main concern.MethodsField observations and semi-structured interviews were conducted with four patients receiving 24-hour home care and their HC assistants. Grounded theory methodology was used.ResultsThe core process identified was Grasping the lifeline, which describes compensatory processes through which patients strived for control and safe care when experiencing a number of exposed states due to inadequate home care. Patients tried to take control by selecting their own HC assistants and sought safe hands by instructing untrained HC assistants in care procedures. When navigating the care system, the patients maintained contacts with professional care providers and coordinated their own care. When necessary, a devoted HC assistant could take over the navigating role. The results are illuminated in a theoretical model.ConclusionsThe results accentuate the importance to patients of participating in their own care, especially in the selection of HC assistants. The model illustrates some challenging areas for improvement within the organisation of 24-hour home care, such as personnel continuity and competence, collaboration, and routines for acute care. Furthermore, it may be used as a basis for reflection during the planning of care for individual patients within home care.

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“…66 Two researchers will conduct the analysis in order to strengthen the validity of the study. 59 Qualitative data from the interviews at each test time point will be analysed independently at each time point and then analysed across all interview tests time points within the group of patients and within the group of caregivers.…”

Section: Discussionmentioning

confidence: 99%

A longitudinal, qualitative and quantitative exploration of daily life and need for rehabilitation among patients with high-grade gliomas and their caregivers

Piil

Jarden²,

Jakobsen

et al. 2013

BMJ Open

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IntroductionHigh-grade gliomas (HGGs) are the most malignant type of brain tumours. The 5-year survival is 10% and a significant part of the ongoing research aims to increase survival through surgical and oncological treatments. Accordingly, there is an increasing need for investigating the HGG trajectory in order to recommend specific guidelines for rehabilitative and supportive interventions.Method and analysisThis study protocol (phase I) describes a longitudinal, qualitative, explorative and descriptive interview study of the life situation and need for rehabilitation among patients and their caregivers and a quantitative evaluation of health-related quality of life. Qualitative and quantitative data are collected in parallel, analysed separately and then merged. The finding of this study will, together with the existing literature, form the background for phase II, which is a feasibility study with a pre-experimental one-group design testing a rehabilitative and supportive intervention programme. The aim of this paper was to describe the design of an upcoming study. Interviews with 30 patients and 30 caregivers will provide information about how the life situation is experienced during the first year after being diagnosed with HGG. Quantitative measurements of quality of life, well-being and physical activity will provide additional information. More precisely, both qualitative and quantitative data will support the planning of the programme regarding the type of intervention(s), with or without supervision, the appropriate time along the trajectory, frequency, localisation, endpoint measurements and eligible patients and/or caregivers.Ethics and disseminationAccording to the Research Ethics Committee, approval is not needed for phase I as it is a non-intervention part of the study. Ethical approval of phase II will be sought at the time where the content of the intervention programme has been developed. Dissemination will occur through presentation and findings will be published in peer-reviewed journals.

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Life with home mechanical ventilation for young men with Duchenne muscular dystrophy

Cited by 39 publications

References 31 publications

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers

Patients in 24-hour home care striving for control and safety

A longitudinal, qualitative and quantitative exploration of daily life and need for rehabilitation among patients with high-grade gliomas and their caregivers

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