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Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children

Background: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers’ daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. Methods: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019.

Mon, 06/13/2022 - 13:07

Prognostic awareness in advanced cancer patients and their caregivers: A longitudinal cohort study

Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question).

Sun, 06/12/2022 - 22:09

Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

Background: Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving—PAC). Methods: This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data.

Sun, 06/12/2022 - 13:21

The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of “shared decision‐making”

Background and aims: Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision‐making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient‐caregiver relationships. Methods: We conducted semi‐structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support.

Thu, 06/09/2022 - 21:11

The role of Connected Health technologies in supporting families affected by paediatric cancer: A systematic review

Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer.

Thu, 06/09/2022 - 20:30

The Road to Family Resiliency: A Case Report of a Family's Experiences Following Adolescent Stroke

Purpose: This study generated an understanding of familial resiliency following an adolescent's stroke and what resiliency-related outcomes were important to this family. Design and Methods: A qualitative case study design was used to collect data during an in-person interview. The interview was transcribed verbatim and analyzed using thematic analysis.

Thu, 06/09/2022 - 19:35

The Protective Role of Social Support Sources and Types Against Depression in Caregivers: A Meta-Analysis

Background: The protective effects of social support for caregiver mental health are well documented, however the differential impact of support providers (partner, child, family, siblings, friends, professionals) and types (perceived, received) remain unclear. Methods: Observational data from 21 independent studies, involving a pooled sample of 2273 parents, stepparents and grandparents of children (aged ≤ 19) with autism spectrum disorder (ASD) were examined. Pearson's r, publication bias and heterogeneity were calculated using random effects modelling.

Thu, 06/09/2022 - 17:22

Oral Care Experiences of Palliative Care Patients, Their Relatives, and Health Care Professionals: A Qualitative Study

Background: Oral symptoms in a growing number of palliative care patients are often neglected. Dental professionals are not always involved in palliative care. Oral care is often inadequately delivered to palliative care patients, while oral problems can affect the quality of life. Methods: A qualitative study was conducted to explore oral care experiences of palliative care patients, their relatives, and health care professionals (HCPs). Four patients, 4 relatives, and 4 HCPs were interviewed in a hospice.

Thu, 06/09/2022 - 15:42

Modeling types of informal care dyads by gender, primary condition, and relative age

Background: While women remain the majority of caregivers, gender parity is reported among Millennials, people of color, and LGBTQ caregivers. Such dynamics of care dyads are rarely explored in relationship with caregiver selection, social support, or care outcomes, and without standardized measures we are uncertain whether this trend is associated with youth, demographic changes, or a societal shift.

Wed, 06/08/2022 - 17:13

“Neither a wife nor a widow”: an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

Background: Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Methods: Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): Findings: (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants’ accounts showed complex losses and relationship transformations that were challenging to cope with.

Tue, 06/07/2022 - 10:48

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