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John Wiley & Sons Inc

Our disease: a qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis

Purpose: To provide a unique and conceptually comprehensive account of the lived experiences of caregiving spouses/partners of people with multiple sclerosis, which can be used to better enable health professionals to provide appropriate support services. Method: A systematic review of qualitative studies reporting the experiences of caregiving spouses/partners was conducted. Relevant articles were identified and analysed using a meta‐ethnographic synthesis.

Fri, 03/29/2019 - 11:37

Exploring the cancer caregiver's journey through web‐based Meaning‐Centered Psychotherapy

Objective Psychosocial interventions are historically underutilized by cancer caregivers, but support programs delivered flexibly over the Internet address multiple barriers to care. We adapted Meaning‐Centered Psychotherapy for cancer caregivers, an in‐person psychotherapeutic intervention intended to augment caregivers' sense of meaning and purpose and ameliorate burden, for delivery in a self‐administered web‐based program, the Care for the Cancer Caregiver (CCC) Workshop.

Fri, 03/29/2019 - 11:25

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources

Objectives Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for CaregiversTM.

Fri, 03/29/2019 - 10:21

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home.

Thu, 03/28/2019 - 18:27

Randomized controlled trial of family-based education for patients with heart failure and their carers

Aim. The aim of this study was to evaluate a heart failure education programme developed for patients and carers in Thailand. Background. Heart failure is major health problem. This is the first trial of a family-based education programme for heart failure patients and carers residing in rural Thailand. Design. Randomized controlled trial. Methods.

Thu, 03/28/2019 - 15:06

Attitudes Toward Family Involvement in Cancer Treatment Decision Making: The Perspectives of Patients, Family Caregivers, and Their Oncologists

Background To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. Patients and Methods A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM.

Thu, 03/28/2019 - 14:51

Resilience as a concept for understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease (COPD): an integrative review

Aims: This paper was a report of the synthesis of evidence on examining the origins and definitions of the concept of resilience, investigating its application in chronic illness management and exploring its utility as a means of understanding family caregiving of adults with Chronic Obstructive Pulmonary Disease. Background: Resilience is a concept that is becoming relevant to understanding how individuals and families live with illness, especially long-term conditions.

Thu, 03/28/2019 - 14:46

Tolerating Uncertainty: Perceptions of the Future for Ageing Parent Carers and Their Adult Children with Intellectual Disabilities

Background: Improved life expectancy means that more adults with intellectual disabilities are now living with ageing parents. This study explored older families' perceptions of the future. Methods: Semi‐structured interviews were conducted with nine older parents and three adults with intellectual disabilities and analysed to produce an explanatory thematic framework.

Thu, 03/28/2019 - 14:23

Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services

WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell.

Thu, 03/28/2019 - 13:53

Unmet needs in young adults with a parent with a chronic condition: a mixed-method investigation and measure development study

Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population.

Thu, 03/28/2019 - 13:32

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