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Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Sun, 01/01/2023 - 14:58

Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part II: A qualitative analysis

Background: The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement.

Tue, 02/22/2022 - 19:00

Evaluating the effectiveness of the Family Connections program for caregivers of youth with mental health challenges, part I: A quantitative analysis

Introduction: Caregivers of youth with mental health (MH) challenges are often faced with complex problems in relation to caring for their youth. Family Connections™ (FC) is a 12‐week skills training program for families of individuals with MH challenges, developed originally for Borderline Personality Disorder. Research is needed to examine the effectiveness of FC for caregivers of youth with diverse MH challenges. Objective: To examine the effectiveness of FC for caregivers of youth with MH challenges.

Tue, 02/22/2022 - 18:50

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

Male Caregivers: Shifting roles among family caregivers

BACKGROUND: More than 16 million men in the United States are acting in the role of family caregiver. Men are usually viewed as not being caring simply because they provide care differently than women. However, this is not the case. OBJECTIVES: This article explores male caregiving from the perspective of family and professional roles. METHODS: A review of the literature related to men in the caregiving role was conducted. This review included only men providing care to a family member and was limited to men caring for an adult.

Wed, 06/26/2019 - 12:43

A multi-professional short-term group intervention for informal caregivers of patients using a home palliative care service

Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key issues of feasibility, acceptability, and accessibility.

Thu, 07/20/2017 - 15:15

Qualitative evaluation of a young carers' initiative

This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time.

Thu, 07/20/2017 - 15:12