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Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

An editorial is presented to the article Chronic kidney disease, associated symptoms, and treatment, including medications, dietary and fluid restrictions, and kidney replacement therapy, has disrupt and constrain daily living and impair the quality of life of patients. Topics include the development of validated patient reported outcome measures and used to assess of life participation; and monitoring of life participation has supported by regulatory agencies as a metric for quality care.

Tue, 06/07/2022 - 19:52

The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

Background: The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. Methods and findings: As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem.

Tue, 06/07/2022 - 19:04

Live hospice discharge: Experiences of families, and hospice staff

Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge.

Tue, 06/07/2022 - 17:12

Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim.

Tue, 06/07/2022 - 13:20

“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

The Journey of Recovery: Caregivers' Perspectives From a Hip Fracture Telerehabilitation Clinical Trial

Objective: The objective was to explore family caregivers' perspectives of the recovery process of older adults with hip fracture and describe experiences from caregivers who: (1) used the online intervention, or (2) received home-based care provided by the Andalusian Public Health Care System. Methods: This was an exploratory secondary study with informal family caregivers who had an older adult family member with hip fracture enrolled in a novel telerehabilitation (telerehab) clinical trial.

Mon, 06/06/2022 - 23:41

Involvement in self‐care and psychological well‐being of Spanish family caregivers of relatives with dementia

Background: The provision of continuous care to a dependent person can lead to a lack of self‐care by the caregiver themselves with corresponding low levels of well‐being. This well‐being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked.

Mon, 06/06/2022 - 22:35

Internet Access and Usage Among Stroke Survivors and Their Informal Caregivers: Cross-sectional Study

Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.

Mon, 06/06/2022 - 21:26

The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes

Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers.

Mon, 06/06/2022 - 18:57

Informational Gaps, Needs, and Preferences of Adults With Chronic Health Conditions and Their Family Caregivers

Objectives: The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. Methods: A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system.

Mon, 06/06/2022 - 16:14

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