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What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals' perspectives.

ABSTRACT: Previous research has established that some informal caregivers (relatives/friends) of people with visual impairment (PVI) may require support themselves. However, there is limited understanding of how healthcare services and sight charities in the UK currently support caregivers. This study was therefore conducted to explore what support, information, and advice healthcare and charity professionals (HCCPs) currently provide for caregivers, and which additional support HCCPs would recommend in order to benefit caregivers. HCCPs filled out an online survey, distributed among UK-based professional bodies and charity partners. Of 104 individuals who consented to participate, 68 (65%) HCCPs completed the survey in September-November 2019. Participants responded to Likert-type questions about how they interact with and support caregivers of PVI. Thirty-eight (56%) participants provided responses to open-ended questions about improving support for caregivers; qualitative analysis was conducted using the Framework Method. The survey showed that caregiver support activities most commonly undertaken related to onward signposting (90% (95% CI: 82-97%) of participants), or providing information about low vision aids and adaptations (85% (95% CI: 77-94%)), compared to activities focused on broader caregiver wellbeing. In open-ended responses, HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system. They recommended improving coordination and accessibility of information, as well as provision of emotional support and tangible assistance such as respite care and financial support. The study suggests that HCCPs perceive significant unmet needs among caregivers of PVI, and would welcome further resources, information, and training to support caregivers.

SUBMITTER: Enoch J

PROVIDER: S-EPMC8572072 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. METHODS:We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. RESULTS:Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. CONCLUSIONS:Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.

Project description:Background: There is limited research on brain lesions in children with cerebral visual impairment (CVI) of heterogeneous etiologies and according to associated subtyping and vision dysfunctions. This study was part of a larger project establishing data-driven subtypes of childhood CVI according to visual dysfunctions. Currently there is no consensus in relation to assessment, diagnosis and classification of CVI and more information about brain lesions may be of potential diagnostic value. Aim: This study aimed to investigate overall patterns of brain lesions and associations with level of visual dysfunction and to compare the patterns between the classification subgroups in children with CVI. Methods: School-aged children with CVI received ophthalmological and neuro-psychological/developmental assessments to establish CVI-related subtyping. Other pediatric information was collected from medical records. MRI scans were coded according to a semi-quantitative template including brain regions (right hemisphere, left hemisphere, visual pathways) and summed for total scores. Non-parametric analyses were conducted. Results: 28 children had clinical brain MRI scans available [44% of total sample, Group A (lower severity of visual dysfunctions) n = 16, Group B (higher severity) n = 12]. Total brain scores ranged between 0 and 18 (Group A mdn = 7, IQR = 0.8-10.0, Group B mdn = 10, IQR = 6.5-11.8) and were widespread across regions. 71 per cent had post-geniculate visual pathway damage. The median total brain and hemisphere scores of Group B were higher than subgroup A but differences did not reach statistical significance. No statistically significant associations were found between brain scores and vision variables (acuity, contrast sensitivity). Conclusion: This study found a spread of lesions across all regions on the brain scans in children with congenital CVI. The majority had damage in the postgeniculate visual pathways and visual cortex region suggesting this is an area of interest and potentially informative for diagnosis. However the subtyping classification did not show differences in number or region of lesions though the trend was higher toward Group B. This study confirms the complex diffuse and variable nature of brain lesions in children with congenital CVI, many of whom have other neurological impairments.

Project description:Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Project description:ObjectivesThe Awareness, Care and Treatment In Obesity maNagement (ACTION) Teens study explored attitudes, behaviours, perceptions and barriers regarding effective obesity care among adolescents living with obesity (ALwO), caregivers and healthcare professionals (HCPs).DesignCross-sectional online survey study.SettingStudy across 10 countries; here, we report data from UK respondents.ParticipantsOverall, 416 ALwO (aged 12 to <18 years; body mass index ≥95th percentile for age and sex (WHO charts)), 498 caregivers and 250 HCPs in the UK completed the survey (August-December 2021).Primary and secondary outcome measuresSurvey questions addressed key aspects of obesity management for ALwO.ResultsOverall, 46% of ALwO perceived their weight as normal or below normal and 86% believed their health was at least good; 56% and 93% of caregivers responded similarly for their ALwO. Despite this, most ALwO (57%) had attempted to lose weight in the past year and 34% felt highly motivated to lose weight. YouTube and social media were most often used by ALwO for information about weight management (41% and 39%); few ALwO and caregivers sought information from a doctor (13% and 22%). Among ALwO who had discussed weight with an HCP (n=122), 49% trusted their weight-management advice. Only 10% of ALwO and 8% of caregivers were told by a doctor that they/their child had obesity. For HCPs, obesity-related comorbidities were the most common reason for initiating weight conversations with ALwO (73%), while short appointment times were the most common barrier (46%). Overall, 30% of ALwO and 11% of caregivers did not feel comfortable bringing up weight with an HCP.ConclusionsImproved education and communication are needed among ALwO, caregivers and HCPs in the UK to help improve awareness of obesity, its aetiology and its impact on health, and to support HCPs to proactively initiate weight-related conversations and build trust with ALwO and caregivers.Trial registration numberNCT05013359.

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What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals' perspectives.

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