The impact of prolonged disorders of consciousness on family caregivers' quality of life - A scoping review.
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ABSTRACT:
SUBMITTER: Chinner A
PROVIDER: S-EPMC9487862 | biostudies-literature | 2022 Aug
REPOSITORIES: biostudies-literature
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The impact of prolonged disorders of consciousness on family caregivers' quality of life - A scoping review.
Chinner Amy A Pauli Ruth R Cruse Damian D
Neuropsychological rehabilitation 20210604 7
Providing long-term care for a family member diagnosed with a Prolonged Disorder of Consciousness (PDoC) can have a significant impact on the lives of family caregivers. This scoping review aimed to explore the current literature investigating the impact of caring for a person in a PDoC on family caregivers' Quality of Life (QOL), as categorized using the WHOQOL-BREF model. We observed that articles employing quantitative methodologies mostly reported QOL outcomes relating to negative feelings, ...[more]
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Project description:IntroductionThe incidence of pediatric tracheostomy is on the rise. More children are undergoing tracheostomy at a younger age and living longer and cared for at home. Caring for children with tracheostomy affects the caregivers' Quality of Life (QOL) and caregiver burden. We undertook a systematic review and meta-analysis to determine the impact of pediatric tracheostomy on caregivers' QOL and caregiver burden.MethodsWe performed a search for quantitative studies measuring QOL, caregiver burden and related factors such as psychological distress, coping, stress, and financial strain using validated instruments, reported by caregivers of children with tracheostomy. We searched PubMed, Embase, Cochrane Central Register of Clinical Trials, CINAHL, and PsycINFO with the following search terms: "pediatrics," "tracheostomy," "quality of life," "caregivers," "care burden" from the inception of respective databases to 23rd May 2024. Meta-analysis was conducted using R (version 4.3.1).ResultsTwenty-three studies (1,299 caregivers) were included in systematic review. Seven studies (469 caregivers) using Pediatric Quality of Life Family Integrated Module underwent meta-analysis. The pooled mean total family impact score, parental health-related QOL, family functioning score were 70.29 [95% CI, 61.20-79.37], 69.27 [95% CI, 60.88-77.67], and 72.96 [95% CI, 65.92-80.00] respectively. Other key instruments were the Pediatric Tracheostomy Health Status Instrument and Zarit Burden Interview. Qualitative synthesis identified several risk factors for lower QOL and higher caregiver burden: comorbidities in children, younger age at tracheostomy, need for additional medical equipment, presence of older siblings, higher financial strain, being the sole caregiver or being unmarried, and maternal depression. Caregivers' QOL correlated positively with coping and negatively with stress which is, in turn, associated with medical complications in the first year and the duration of tracheostomy. About 40% of mothers experienced moderate to severe caregiver burden while caring for their children with tracheostomy and this was significantly correlated with depression. Encouragingly, parents also reported positive experience including closeness of the family, feeling stronger, and having a strong sense of mastery.DiscussionCaregivers of children with tracheostomy experience low QOL and high caregiver burden, which were exacerbated by various medical and psychosocial factors. QOL should be assessed during clinical encounters to identify caregivers who require additional support which includes learning coping and stress reduction strategies.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=334457, identifier CRD42022334457.
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Project description:BackgroundCaregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers.ObjectiveThis study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers.MethodsFollowing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants.ResultsIn response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators.ConclusionsThere are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.
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Project description:(1) Background: Sustained axonal degeneration may play a critical role in prolonged disorder of consciousness (DOCs) pathophysiology. We evaluated levels of neurofilament light chain (NFL), an axonal injury marker, in patients with unresponsive wakefulness syndrome (UWS) and in the minimally conscious state (MCS) after traumatic brain injury (TBI) and hypoxic-ischemic brain injury (HIBI). (2) Methods: This prospective multicenter blinded study involved 70 patients with prolonged DOC and 70 sex-/age-matched healthy controls. Serum NFL levels were evaluated at 1-3 and 6 months post-injury and compared with those of controls. NFL levels were compared by DOC severity (UWS vs. MCS) and etiology (TBI vs. HIBI). (3) Results: Patients' serum NFL levels were significantly higher than those of controls at 1-3 and 6 months post-injury (medians, 1729 and 426 vs. 90 pg/mL; both p < 0.0001). NFL levels were higher in patients with UWS than in those in MCS at 1-3 months post-injury (p = 0.008) and in patients with HIBI than in those with TBI at 6 months post-injury (p = 0.037). (4) Conclusions: Patients with prolonged DOC present sustained axonal degeneration that is affected differently over time by brain injury severity and etiology.
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Project description:IntroductionPopulation aging increases the risk of dependency among older adults, which in turn necessitates care, primarily provided by family caregivers. This situation leads to physical and emotional strain on these caregivers. New technologies, such as tele-education, digital platforms, or mobile applications, can offer an accessible and equitable alternative for caregiver training and self-care support.ObjectiveThe objective of this review is to analyze interventions targeted at family caregivers, both for their own self-care and for the care of dependent individuals, using new technologies.DesignA scoping review was conducted, including a total of thirty-two articles extracted from three databases: CINAHL, Scopus, and PubMed. Articles in any language were included, with no fixed time limit, while articles with samples that included family caregivers of oncology patients were excluded.ResultsMost of the interventions were conducted via videoconference, showing outcomes that indicated a reduction in depressive symptoms among family caregivers.ConclusionsThe implementation of new technologies for the development of interventions presents a viable alternative to in-person sessions. These technologies have shown positive results, while also helping to overcome time and geographical barriers imposed by caregiving responsibilities.
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Project description:ObjectivesFamily caregivers (FCGs) play an important role in the quality of life (QOL) of lung cancer patients. FCGs experience significant psychological distress related to their caregiving role, but there is relatively little data about FCG QOL after cancer surgery. We sought to describe QOL trajectories for patients and their FCGs after lung cancer surgery.MethodsThis is a secondary analysis of a larger, prospective QOL study, testing the effectiveness of an interdisciplinary palliative care intervention for lung cancer patients and FCGs in a single institution. The intervention included interdisciplinary care planning and formal education sessions for both patients and FCGs. This subset analysis included patients who underwent surgery and had a matching FCG with complete QOL data (41 pairs of patients and caregivers out of 112 surgical patients). Patient QOL was assessed with the Functional Assessment of Cancer Therapy-Lung tool. FCG QOL was assessed with the FCG version of the City of Hope QOL tool. Psychological distress was assessed using the Distress Thermometer.ResultsPsychological distress levels were highest for patients (3.8/10) and FCGs (5.1/10) before surgery. Distress levels decreased among patients at six (2.9/10) and 12 weeks (2.2/10, p=0.001) later, but remained elevated among FCGs (4.2/10 and 4.4/10, p=0.157). Compared with usual care, patients in the intervention group reported improved physical and functional QOL outcomes at 12 weeks (p<0.01), but there was no significant benefit seen for FCGs in any domain (p>0.05).ConclusionsFCGs of lung cancer patients experience significant psychological distress. FCGs continue to have impaired QOL 3 months after surgery. The trajectory of QOL for FCGs does not mirror that of patients. Our palliative care intervention showed improved QOL outcomes for this subset of patients but was not effective for their FCGs.Trial registrationNCI sponsored, trial identifier NCT00823667 https://clinicaltrials.gov/show/NCT00823667.
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Project description:Background and objectivesOnly a fraction of the 53 million caregivers in the United States use available formal community services. This scoping review synthesized the literature on the barriers and facilitators of community support service utilization by adult caregivers of a family member or friend with an illness, disability, or other limitation.Research design and methodsWe searched PubMed, CINAHL, PsycInfo, and Web of Science for quantitative and qualitative articles assessing barriers and facilitators of caregivers' access to and utilization of resources, following Preferred Reporting Items for Systematic Review and Meta-Analysis scoping review guidelines. Thematic analysis, drawing on an initial conceptualization, informed key insights around caregivers' resource navigation process.ResultsThe review provides support for individual factors affecting service use. Notably, some factors-such as time restrictions and increased caregiving demands-appear to function as barriers to accessing services even as they increase caregivers' need for support. Additionally, contextual barriers including cultural factors and support of friends/family can affect caregivers' access to resources. Finally, experience with health systems and structures and the intersection with other factors can affect service utilization.Discussion and implicationsSuboptimal access to and utilization of community support services can be addressed at both the person and system level to mitigate potential inequities. Ensuring that caregivers are aware of, eligible for, and have the capacity and support to access the appropriate resources at the right time is essential for improving caregiver outcomes, reducing burnout, and supporting continued care.
| S-EPMC11491529 | biostudies-literature
Project description:AimTo describe how generic preference-based health-related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD).MethodA systematic search of nine databases identified studies that used generic preference-based HRQoL instruments in children with NDD. Data extracted following the Preferred Reporting Items for Systematic Review and Meta-Analyses extension for Scoping Review guidelines included type of NDD, instrument used, respondent type, justification, and critical appraisal for these selections.ResultsThirty-six studies were identified: four cost-utility analyses; 15 HRQoL assessments; five economic burden studies; three intervention studies; and nine 'other'. The Health Utilities Index (Mark 2 and Mark 3) and EuroQoL 5D (EQ-5D; three-level EQ-5D, five-level EQ-5D, and the youth version of the EQ-5D) instruments were most frequently used (44% and 31% respectively). The relatively low use of these instruments overall may be due to a lack of psychometric evidence, inconsistency in justification for and lack of clarity on appropriate respondent type and age, and geographical challenges in applying preference weights.InterpretationThis study highlights the dearth of studies using generic preference-based HRQoL instruments in children with NDD. The use of cost-utility analysis in this field is limited and validation of these instruments for children with NDD is needed. The quality of data should be considered before guiding policy and care decisions.What this paper addsLimited use of generic preference-based health-related quality of life (HRQoL) instruments in studies on children with neurodevelopmental disorders. Only 11% of studies were cost-utility analyses. Inconsistencies in justification for choosing generic preference-based HRQoL instruments and respondent types.
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