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Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses

Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit.

Mon, 06/06/2022 - 23:48

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement.

Mon, 06/06/2022 - 23:35

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives.

Mon, 06/06/2022 - 14:52

Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties

Background: Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves.

Mon, 06/06/2022 - 12:34

Influence of gender determinants on informal care and health service utilization in spain: Ten years after the approval of the equality law

Background: The existence of gender inequalities in health, in the use of health services, and in the development of informal care has been demonstrated throughout scientific literature. In Spain, a law was passed in 2007 to promote effective equality between men and women. Despite this, different studies have shown that the previous gender inequalities are still present in Spanish society.

Sun, 06/05/2022 - 21:53

The Influence of Family Caregivers’ Experience of Interprofessional Care on Their Participation in Health Checkups as Preventive Health Behavior in Japan—A Cross-Sectional Analysis

Background: The role of family caregivers has been vital, especially in superaging societies like Japan’s. The caregivers’ experience of interprofessional care is a key aspect in their evaluation of the quality of integrated care. We sought to explore whether family caregivers’ experience of interprofessional care is associated with their own participation in health checkups as preventive health behaviors.

Sun, 06/05/2022 - 21:46

Impact of the Outbreak of the COVID-19 Pandemic on Formal and Informal Care of Community-Dwelling Older Adults: Cross-National Clustering of Empirical Evidence from 23 Countries

Background: The COVID-19 pandemic has been dramatically affecting the life of older adults with care needs and their family caregivers. This study illustrates how the initial outbreak of the pandemic changed the supply of formal and informal care to older adults in European countries and Israel and assesses the resilience of these countries in providing support to their older populations by means of a mix of both types of care.

Sun, 06/05/2022 - 18:08

Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience?

Sun, 06/05/2022 - 17:40

Impact of sensitization of family caregivers upon treatment compliance among geriatric patients suffering from elder abuse and neglect

Background: Geriatric patients in various outpatient department (OPDs) have been found to agonize from elder abuse and neglect (EAN). Such suffering imposes depressive states within individuals, which in turn affects treatment compliance. The objective of this study was to evaluate the impact of sensitization (psychotherapeutic) of family caregivers (FCGs) upon two denture treatment parameters (maintenance and treatment satisfaction) among EAN patients and compare the differences in outcome with non-abused patients.

Sun, 06/05/2022 - 17:09

Impact of COVID-19 on the Mental Health and Well-Being of Latinx Caregivers of Children with Intellectual and Developmental Disabilities

Background: The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. Methods: In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD.

Sun, 06/05/2022 - 15:36

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