John Wiley & Sons

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.

Background: Food allergy is a substantial health burden, which disproportionately affects children. Among children with food allergy, as many as 70% have multiple food allergies. Whereas the overall burden of food allergy on quality of life has been described, little is known about the burden of individual allergens.

The aim of the study is to clarify the concept "care for carers," and enhance our understanding of caring for carers of ill relatives. Healthcare professionals often refer to "care for carers" when discussing methods to support the carers of ill family relatives. These carers do not always receive the support they need. A literature search of electronic databases and search engines, using the keywords carer, caregiver, caring for the carer, caring for the caregiver was done. Peer-reviewed research articles published between 2014 and 2019 and written in the English language were analyzed.

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narrativ

What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties.

Aim To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care. Design A controlled before-and-after design. Methods Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care.

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy.

Objectives: To undertake a realist review of carer‐led oral hygiene interventions for people with intellectual disabilities. This was run parallel with a Cochrane Review. Methods: Realist review methods were followed. This was characterized by an iterative process of developing and refining theories of how interventions might work, expressed as context‐mechanism‐outcome configurations. The steps included identifying candidate theories with local and international expert consultation before applying an iterative search strategy.

Aims To test a multiple mediation model of internalized stigma and caregiving burden in the relationship between severity of illness and distress among family caregivers of persons living with schizophrenia. Design This is a cross-sectional study. Methods Data were collected from a consecutive sample of 344 Chinese family caregivers of persons living with schizophrenia between April-August 2018.

Aim This study aimed to develop a Japanese version of the Caregiving Interface Work Scale (J-CIWS) for use with employed Japanese family caregivers. Methods Permission was obtained from the developer of the original CIWS. The CIWS contains 20 items: 10 measuring care interface work (CIW) and 10 measuring work interface care (WIC). Responses are measured on a five-point Likert scale. The J-CIWS was developed through forward- and back-translation and cognitive interviews of employed family caregivers.