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How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.

Thu, 01/05/2023 - 17:02

Parent-Child Communication in a Childhood Cancer Context: A Literature Review

This integrative literature review examines the facilitators and barriers to open and clear parent-child communication in the context of childhood cancer (for this literature review, child refers to ages 0 to 19 years). The Resilience in Illness Model (Haase et al., 2017) was employed to organize the findings and link to resilience outcomes among children with cancer. In a search of three international databases (PubMed, CINAHL, and PsycINFO), 18 studies met inclusion criteria and were selected for review.

Thu, 01/05/2023 - 15:12

Siblings' caring roles in families with a child with epilepsy

Despite large amounts of care for chronic conditions being provided within the family, information regarding the extent to which siblings contribute to informal care practices in families where a child has a chronic condition is limited. This article draws on multiple perspective data from 24 families that had a child with epilepsy. In doing so, the article illustrates siblings' significant contribution to caring for their brother or sister and further develops the alert assistant concept.

Tue, 12/13/2022 - 17:00

Money transfers within caring dyads: some open research questions

By its definition, care is not (financially) reimbursed. However, care recipients often provide material and/or financial support to their carers, which may be related to a range of psychological and social outcomes, such as the financial fragility of care recipients, changes in the quality of relationships and care, or psychological burden.

Tue, 08/23/2022 - 22:45

Associations between young informal caring and mental health: a prospective observational study using augmented inverse probability weighting

Background: Across the world, many young people are supplying unpaid, informal care. There is growing evidence of the impact of this caring role on the lives of young informal carers, however there has been little quantitative analysis of the mental health impacts. This research aimed to estimate the effect of informal caring at age 14/15 years on mental health at age 18/19 years. Method: Data was drawn from Waves 5, 6, 8 (2012-2018) of the Longitudinal Study of Australian Children.

Wed, 08/03/2022 - 18:31

Common ethical dilemmas of family caregivers of palliative patients in Indonesia

Background: Family caregivers, especially in Asian countries, have a profound role in caring for a sick family member. However, there are wide variations between the Asian and western world in terms of culture and facilities. Therefore, the problems and needs of family caregivers between those two regions may also be distinct, and it is important to explore and elaborate based on our empirical evidence. In Indonesia, motives and values in caregiving and religion become the wheel-power of the family caregivers in providing care.

Mon, 01/31/2022 - 18:32

The Complexity of Caring for People with Mental Disorders: Family Challenges in Contributing to Horticultural Therapy

The fluctuation of psychological conditions among people with mental disorders are suspected to burden the family caregiver. Horticultural therapy has been known as an effective complementary therapy to enhance people mental health. Family assistance in the implementation of horticultural therapy is a form of family caring which contributes greatly in determining the achievement of horticultural therapy goals.

Thu, 03/18/2021 - 14:43

A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia

Background: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet.

Sat, 12/12/2020 - 11:52

'A fifty mile round trip to change a lightbulb': An exploratory study of carers' experiences of providing help, care and support to families and friends from a distance

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support.

Mon, 12/07/2020 - 14:57

The value of “us”—Expressions of togetherness in couples where one spouse has dementia

Background: Living with dementia involves both illness and health, and self-care and care from others. As most persons with dementia live in their own homes, dementia affects not only the person with the disease, but also family, commonly the partner. Research shows that spousal carers feel as though they are losing their partners since they can no longer share thoughts, feelings and experiences as a couple. Aim: The aim of the study was to describe the sense of togetherness of the spouses when one spouse has dementia.

Tue, 08/11/2020 - 12:09

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