The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

Soeterik, Sonja; Connolly, Sarah; Playford, E Diane; Duport, Sophie; Riazi, Afsane

doi:10.1177/0269215517695372

Cited by 24 publications

(20 citation statements)

References 41 publications

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“…The literature has shown that families of PDOC patients experience significant distress following profound brain injury (Kitzinger and Kitzinger, 2014). A systematic review by Soeterik et al (2017) found that some caregivers exhibit clinically significant levels of grief, burden, wellbeing changes and coping difficulties, which may remain the same or deteriorate over time. The findings from the present study suggest that this has implications for clinicians providing care for these patients, who may not only be affected personally by the cases they come across, but find themselves in difficult roles as key workers where they feel a responsibility to alleviate family distress.…”

Section: Dealing With Family Expectationsmentioning

confidence: 99%

Staff experiences of working with patients with prolonged disorders of consciousness: a focus group analysis

Logeswaran

Papps

Turner-Stokes

2018

International Journal of Therapy and Rehabilitation

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Background/Aims: UK national clinical guidelines recommend assessment of patients in prolonged disorders of consciousness in specialist centres. Working in these centres can be challenging, but little is currently published about what staff experience or how best to support them. We explored the views of health care professionals working with prolonged disorders of consciousness patients in one specialist rehabilitation unit. Methods: Six focus groups were run with allied health professionals, medical and nursing staff in discipline-specific groups to explore the rewards and challenges of working with patients in prolonged disorders of consciousness, and what staff felt they needed to assist them. Transcribed data were analysed using thematic analysis. Findings: Five positive themes emerged: seeing change, supporting families, quality of the team and clinical input, work complexity and its personal impact. Three negative themes were identified: dealing with death and ‘living death’, dealing with family expectations and distress, and the negative professional and personal impact on staff. In terms of what would assist staff, three themes emerged: greater support with family communication, additional prolonged disorders of consciousness-specific training and further development of assessments of awareness. Conclusions: Staff recommendations on what would assist them could be used to inform the development of high-quality approaches to assessment and care in prolonged disorders of consciousness.

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Section: Dealing With Family Expectationsmentioning

confidence: 99%

Staff experiences of working with patients with prolonged disorders of consciousness: a focus group analysis

Logeswaran

Papps

Turner-Stokes

2018

International Journal of Therapy and Rehabilitation

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“…, Soeterik et al . ). Despite being a small group, PDOC patients also place a large financial burden on the NHS.…”

Section: Introductionmentioning

confidence: 97%

Speech and language therapy best practice for patients in prolonged disorders of consciousness: a modified Delphi study

Roberts

Greenwood

2019

Intl J Lang & Comm Disor

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Background: Research regarding speech and language therapy (SLT) for patients in prolonged disorders of consciousness (PDOC) is very limited. The Royal College of Physicians' (RCP) PDOC guideline provides recommendations regarding best practice, but does not give detail about many aspects of assessment and management. As a result, SLTs have little information regarding best practice for this complex patient group. Aims: To ascertain the degree of consensus amongst expert SLTs regarding SLT best practice for patients in PDOC in order to inform the future development of SLT guidelines. Methods & Procedures:A two-round modified Delphi technique was used. Participants were recruited from major trauma centres and neurorehabilitation units in England and national SLT clinical excellence networks. To participate, SLTs had to be working on neurosciences, neurosurgery or neurorehabilitation wards that treat adult PDOC patients, or have ࣙ 3 years' experience of working with PDOC. The Round 1 questionnaire was developed from the RCP's PDOC guideline and from existing research literature. It included ratings of statements regarding SLT best practice using Likert or temporal scales, with optional written justifications/comments and opportunities for participants to suggest additional statements. The percentage agreement amongst participants was calculated for each Round 1 statement. Written justifications for views were analysed using content analysis. The Round 2 questionnaire contained both quantitative and qualitative feedback from Round 1, allowing participants to reappraise their views. The final degree of consensus was then calculated after completion of both rounds. Outcomes & Results: A total of 40 SLTs completed Round 1, with 36 completing Round 2 (90% response rate). Consensus was achieved for 87% (67/77) of statements regarding best practice on a variety of topics including communication, tracheostomy, dysphagia and oral hypersensitivity. The statements represented assessment, management and service delivery components of SLT practice. Conclusions & Implications: A total of 67 best practice statements were created. The statements provide a useful starting point for the creation of SLT guidelines to support best practice, and also have the potential to be used to advocate for the provision of SLT services for patients in PDOC. Future studies should focus on whether the expert opinion generated here can be borne out in experimental research.

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“…They are first resource of care, especially for patients with long-term and permanent needs (14). The caregivers experience a variety of distresses, prolonged grief, depressive symptoms, physical and financial burden, and social problems (15). This situation is much worser in Iran, due to some resource limitations in health care settings (16), and staff shortage (16), hence, the caregivers of PVS need support and help (17).The studies mostly focused on the care-giving challenges of PVS at home (18;19), and there is a lack of studies on this issue in hospitals.…”

Section: Introductionmentioning

confidence: 99%

The care-givers of patients with persistent vegetative state have a terrible life: the result of a qualitative study

Alimohammadi¹,

Arast²,

Abdi³

2020

Preprint

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Background persistent vegetative state (PVS) is one of the results of traumatic brain injury. These patients are hospitalized for a long time, and need more cares. The caregivers are first members who provide care and have some challenges accordingly. With regards to a lack of information in this issue, the current study was conducted to explore Iranian care-givers experiences of caring for PVS patients following traumatic brain injury.Methods this study was conducted as a descriptive phenomenological study in 2019. Semi-structured interviews were done on caregivers of PVS in a center of trauma in Iran. The interviews were recorded and wrote verbatim, then analyzed using seven steps of Collazi with management of MAXQUDA software. Guba and Lincoln`s criteria were used in favor of rigor, including credibility, dependability, transferability, and confirmability.Results twelve people participated in the study and five themes, and ten subthemes extracted from 428 codes. The themes were "falling into tensions", "seeking peace", "imposed therapeutic duties", "preserve connection" and 'unheard sounds ".Conclusion In this study, the caregivers of PVS experienced some injuries and familial crises. They wished peace by praying and drain their feelings, also did some imposed duties, and tried to address all the needs of patient. They assessed patients' signs daily and some information gap, therefore, wanted to obtain them by relationship with staff. The caregivers communicated with patients and hoped to recovery of patients. They were complained of accommodations and lack of staff visits.

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The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

Cited by 24 publications

References 41 publications

Staff experiences of working with patients with prolonged disorders of consciousness: a focus group analysis

Staff experiences of working with patients with prolonged disorders of consciousness: a focus group analysis

Speech and language therapy best practice for patients in prolonged disorders of consciousness: a modified Delphi study

The care-givers of patients with persistent vegetative state have a terrible life: the result of a qualitative study

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