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Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood

Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age.

Tue, 12/13/2022 - 16:35

"My Whole World Fell Apart": Parents Discovering Their Child Has Anorexia Nervosa

This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN.

Tue, 12/13/2022 - 15:50

"My Whole World Fell Apart": Parents Discovering Their Child Has Anorexia Nervosa

This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN.

Tue, 12/13/2022 - 15:49

Design and Preliminary Testing of the Caregiver-Centered Communication Questionnaire (CCCQ)

The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items.

Tue, 07/14/2020 - 18:13

Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care.

Tue, 07/14/2020 - 18:07

Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges

The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC.

Tue, 07/14/2020 - 16:01

Work and the Family in Later Life: The Effects of Role Stressors, Role Enhancement, and Role Conflict on Self-Perceptions on Aging

The growing aging workforce comprises older workers with a concurrent family role. Guided by life span development and role theories, the primary study hypothesis was that rewards and stressors in the family and work domains would impact self-perceptions on aging because of the enhancement and conflict between these domains. The study sample consisted of workers older than 50 years with at least one of four family roles (spouse, parent of adult children, caregiver to an aging parent, and grandparent) from the 2010 and 2012 Health and Retirement Study (N = 5,628).

Wed, 02/26/2020 - 15:40

Systematic Review of Technology-Based Interventions Targeting Chronically Ill Adults and Their Caregivers

The purpose of this systematic review is to synthesize the study design features as well as the attributes and outcomes of technology-based health interventions targeting chronically ill adults and their family caregivers. Twenty papers representing 19 studies met the inclusion criteria. Various theoretical foundations or approaches guided the interventions in 11 studies. Interventions either aimed to support patient self-management and improve patient outcomes or enhance shared illness management and improve patient and caregiver outcomes.

Wed, 02/26/2020 - 14:21

A systematic meta-review of self-management support for people with dementia

Self-management support for people with dementia is important to help them and their family caregivers to cope with challenges in daily live. Insight into the effects of self-management support interventions on people with dementia is however lacking, despite existing relevant systematic reviews. We therefore conducted a meta-review of relevant systematic reviews, following the PRISMA statement. Systematic literature searches were conducted in PubMed, CINAHL, the Cochrane Library, Embase and PsycINFO.

Wed, 02/26/2020 - 13:31

Stigma phenomenon to dementia in Iranian population: A phenomenological study

Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method.

Wed, 02/26/2020 - 13:21

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