Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families’ needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives’ experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member’s condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of ‘saying goodbye’ in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives’ visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.
An interview questionnaire was presented to a multiethnic sample of 511 women, age 18-64 years, at public and private specialty clinics to determine the frequency, type, and perpetrator of abuse toward women with physical disabilities. The four-question Abuse Assessment Screen-Disability (AAS-D) instrument detected a 9.8% prevalence (50 of 511) of abuse during the previous 12 months. Using two standard physical and sexual assault questions, 7.8% of the women (40 of 511) reported abuse. The two disability-related questions detected an additional 2.0% of the women (10 of 511) as abused. Women defining themselves as other than black, white, or Hispanic (i.e., Asian, mixed ethnic background) were more likely to report physical or sexual abuse or both, whereas disability-related abuse was reported almost exclusively by white women. The perpetrator of physical or sexual abuse was most likely to be an intimate partner. Disability-related abuse was attributed equally to an intimate partner, a care provider, or a health professional. This study concludes that both traditional abuse-focused questions and disability-specific questions are required to detect abuse toward women with physical disabilities.
IPV occurs at elevated and disproportionate rates among women and men with disabilities, especially when assessed over the course of their lives. Future research that relies on standard definitions of disability and violence, uses accessible measurement, and examines IPV in diverse populations of people with disabilities will strengthen future reviews and better inform research and policy priorities on disability and violence.
Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives’ experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents ( n = 278, mean 53.4 years) tended to be female ( n = 216, 78%); over half were ‘son/daughter’ (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their ‘usual place of care’ ( n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of ‘not knowing’; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.
Rehabilitation and disability related research has only recently begun to examine the complex interaction of gender and disability. Women with disabilities experience the double impact of being female and disabled. As women, they have greater risks of psychosocial health problems than do men. As persons with disabilities, they may be even more vulnerable to these gender disparities; for example, compared to women in general, women with disabilities report higher rates of depression and stress. This article describes a new and promising body of research. We offer evidence that corrects any misunderstandings held by rehabilitation specialists that the psychosocial experiences of women with disabilities can be explained by research conducted on men with disabilities or women in general. Clinically and empirically based gender-driven recommendations are offered for research and practice.
Background: Health and social care professionals’ ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. Aim: To explore health and social care professionals’ experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/participants: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March–June 2020) of the COVID-19 pandemic in the United Kingdom. Results: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. Conclusion: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.
In a sample of 415 predominantly minority women with physical disabilities recruited from private and public specialty outpatient clinics, we examined experiences of physical, sexual, and disability-related abuse within the past year and its associations with demographic, disability, and psychosocial characteristics. Logistic regression analyses identified 27% of the variance and indicated that women with disabilities who were younger, more educated, less mobile, more socially isolated, and who had higher levels of depression may have a higher likelihood of having experienced abuse in the past year. This model correctly identified 84% of the abused women with disabilities. Questions of directionality, the role of disability, and validity testing are discussed.
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