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Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions

Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research.

Fri, 09/06/2019 - 13:40

An Examination of a Simplified Stroke Rehabilitation Program for Reducing Family Caregiver's Burden for Stroke Patients in Rural China

With stroke being one of the leading causes of disability worldwide, families and social systems may face strain as they adjust to a caregiving role. This strain may be amplified in family systems living in rural areas due to limited access to resources. Thus, it is important for helping professionals such as couple, marriage, and family therapists to understand what facets of this disability are linked with caregiver strain as well as to explore and understand various interventions that may ease caregiver burden.

Wed, 06/26/2019 - 15:42

Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex.

Wed, 06/26/2019 - 15:00

Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

Purpose: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). Methods: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial.

Wed, 06/26/2019 - 13:15

Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting

Adult cancer patients (ACPs) in resource-limited settings disproportionately suffer from inadequate pain control despite advancements in pain management. Family caregivers (FCGs) can support optimal pain control for ACPs in these settings if they are knowledgeable and confident about the needed care. However, the status of FCGs' knowledge and self-efficacy (SE) for pain management in developing countries is not well established. Purpose: To assess the FCGs' knowledge and SE levels for pain management among ACPs while at home in a resource-limited setting.

Wed, 06/19/2019 - 11:11

Caring for the person with cancer and the role of digital technology in supporting carers

Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers.

Tue, 06/18/2019 - 16:01

Preliminary investigation of predictors of distress in informal caregivers of patients with delirium superimposed on dementia

Objective: Delirium superimposed on dementia (DSD) is common and associated with adverse outcomes. Current evidence indicates that some patients with dementia may recall delirium with distress for them and their caregivers. The aim of this study is to identify predictors of distress in informal caregivers of older patient with DSD.; Methods: A total of 33 caregivers of 33 patients with DSD were interviewed 3 days after the resolution of delirium (T0) and at 1-month follow-up (T1) to describe their level of distress related to the delirium episode.

Tue, 06/18/2019 - 14:44

Needs of persons with dementia and their family caregivers in dementia cafés

Background and Aims: Several studies have shown the effectiveness and diversity of dementia cafés, whereas there are few published articles in academic research focusing on what persons with dementia and their family caregivers need and whether the services provided satisfy their needs. This study aimed to identify the needs of persons with dementia and their family caregivers participating in dementia cafés in Japan.; Methods: Interviews and participant observations were conducted in nine dementia cafés.

Thu, 06/13/2019 - 10:52

Caregiver Burden and Work Productivity Among Japanese Working Family Caregivers of People with Dementia

Background: We examined the association between caregiver burden and work productivity (i.e., absenteeism, presenteeism, and overall work impairment) among working family caregivers of people with dementia and whether job characteristics (i.e., job demands, job control, supervisor and coworker support) moderate this association.; Methods: A cross-sectional correlational study design using a web-based questionnaire survey was conducted among 379 Japanese working family caregivers of people with dementia (105 female, age range 20-77) in May 2016, which measur

Thu, 06/13/2019 - 10:45

The impact of social-emotional context in chronic cancer pain: patient-caregiver reverberations : Social-emotional context in chronic cancer pain

Purpose: Pain is a multifactorial and subjective experience. Psychological and social factors can modulate it. This study analyzed whether and how prolonged cancer pain is related to the social-relational environment's characteristics. Specifically, we investigated whether the caregiver's emotional support, his/her compassion ability or, on the contrary, his/her personal distress, associates with the patient's pain level. Methods: The sample consisted of 38 cancer patients suffering from pain and 38 family caregivers.

Tue, 06/11/2019 - 10:46