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quality of life

Dyadic effects of family-functioning and resilience on quality of life in advanced lung cancer patients and caregivers: An actor-partner interdependence mediation model

Background: Lung cancer as a stressful event profoundly impacts the entire family, especially patients and their family caregivers. Methods: This study uses a dyadic analysis approach to explore the dyadic effects of family functioning on the quality of life (QoL), and whether resilience acts as a mediator in advanced lung cancer patient-caregiver dyads. This was a cross-sectional study, and 287 dyads of advanced lung cancer patients and their caregivers were enrolled.

Thu, 02/10/2022 - 14:03

Dravet Syndrome—The Polish Family’s Perspective Study

Aim: The aim of the paper is to study the prevalence of Dravet Syndrome (DS) in the Polish population and indicate different factors other than seizures reducing the quality of life in such patients. Method: A survey was conducted among caregivers of patients with DS by the members of the Polish support group of the Association for People with Severe Refractory Epilepsy DRAVET.PL. It included their experience of the diagnosis, seizures, and treatment-related adverse effects.

Thu, 02/10/2022 - 10:42

Domains of quality of life in Alzheimer’s disease vary according to caregiver kinship

Introduction: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer’s disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers’ quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. Methods: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6).

Wed, 02/09/2022 - 19:28

Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease

Objectives: This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. Methods: A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire.

Wed, 02/09/2022 - 11:56

Development and Validation of the Family Quality of Life in Dementia Scale

Background and Objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis.

Tue, 02/08/2022 - 16:24

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim.

Wed, 02/02/2022 - 11:42

A Conceptual Model to Improve Care for Individuals with Alzheimer's Disease and Related Dementias and Their Caregivers: Qualitative Findings in an Online Caregiver Forum

Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous.

Tue, 02/01/2022 - 12:21

Comparison of the anxiety, depression and their relationship to quality of life among adult acute leukemia patients and their family caregivers: a cross-sectional study in China

Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS).

Mon, 01/31/2022 - 20:20

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years.

Thu, 01/27/2022 - 16:51

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