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How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

Aims Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.

Tue, 06/11/2019 - 11:37

The unmet needs of family members of patients with progressive neurological disease in the Czech Republic

Background: Caring for patients with a progressive neurological disease (PND) causes stress that may impact on the state of health as well as the quality of life of the caring family. Objective: The aim of the study was to explore the unmet needs of the family members of patients with PND in advanced stages. Methods: Grounded theory (constructivist approach) was used to conceptualize the patterns of unmet care needs.

Mon, 06/10/2019 - 12:27

Emotional and social repercussions of stroke on patient-family caregiver dyads: Analysis of diverging attitudes and profiles of the differing dyads

For patients, the social and emotional repercussions of stroke include shame, personality changes, and upheavals experienced by the couple (i.e. patient and main family caregiver). These impacts on the couple ‘patient/family caregiver’ are scarcely documented. Focusing on the perceptions of the patients and the family caregivers living at home, two years after a stroke occurrence, the aims of the study were to analyse the concordance of attitudes towards the emotional and social repercussions of stroke and to determine the profiles of the differing dyads.

Mon, 06/10/2019 - 12:21

Informal caregiving and personality: Results of a population-based longitudinal study in Germany

Background: The aim of this study was to identify whether informal caregiving time is associated with personality factors longitudinally. Methods: Longitudinal data were gathered from the German Socio-Economic Panel (GSOEP), a large nationally representative, longitudinal study of German households beginning in 1984. Focusing on the association between informal caregiving and personality factors, data were used from the years 2005, 2009 and 2013. The GSOEP Big Five Inventory was used to assess personality factors.

Wed, 05/29/2019 - 10:36

Measuring caregiver activation to identify coaching and support needs: Extending MYLOH to advanced chronic illness

Introduction: Family and friends of seriously ill patients are key partners in providing support and health care at home, managing relationships with clinicians, and navigating complex health care systems. Becoming a knowledgeable, confident, and effective caregiver is a developmental process we term 'caregiver activation' and could be facilitated by clinicians equipped with suitable tools. Managing Your Loved One’s Health (MYLOH) is a new tool to identify gaps in caregivers' knowledge, skills, and access to clinical and personal support.

Fri, 05/24/2019 - 10:08

Income-based inequalities in caregiving time and depressive symptoms among older family caregivers under the Japanese long-term care insurance system: a cross-sectional analysis

AIM: Long-term care systems may alleviate caregiver burdens, particularly for those with fewer resources. However, it remains unclear whether socioeconomic disparity in caregiver burdens exists under a public, universal long-term care insurance (LTCI) system. This study examined income-based inequalities in caregiving time and depressive symptoms in Japanese older family caregivers. We further compared inequality in depressive symptoms with that of non-caregivers to evaluate whether family caregiving exacerbates this disparity.

Tue, 05/14/2019 - 19:45

Informal caregiving and markers of adiposity in the UK Household Longitudinal Study

OBJECTIVES: The aim was to investigate associations between caregiving and adiposity using a representative UK longitudinal study. We also investigated whether associations differed by age, gender and caregiving characteristics. METHODS: Data on 9,421 participants aged 16+ from three waves (2009-2012) of the UK Household Longitudinal Study were used. Body mass index, waist circumference and percentage body fat were assessed.

Tue, 05/14/2019 - 14:49

Update of the Dutch manual for costing studies in health care

Objectives: Dutch health economic guidelines include a costing manual, which describes preferred research methodology for costing studies and reference prices to ensure high quality studies and comparability between study outcomes. This paper describes the most important revisions of the costing manual compared to the previous version. Methods: An online survey was sent out to potential users of the costing manual to identify topics for improvement. The costing manual was aligned with contemporary health economic guidelines.

Wed, 03/20/2019 - 11:48

The cost of dementia in an unequal country: The case of Chile

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver’s burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463.

Mon, 03/18/2019 - 14:55

Stakeholders' views and experiences of care and interventions for addressing frailty and pre-frailty: A meta-synthesis of qualitative evidence

Frailty is a common condition in older age and is a public health concern which requires integrated care and involves different stakeholders. This meta-synthesis focuses on experiences, understanding, and attitudes towards screening, care, intervention and prevention for frailty across frail and healthy older persons, caregivers, health and social care practitioners. Studies published since 2001 were identified through search of electronic databases; 81 eligible papers were identified and read in full, and 45 papers were finally included and synthesized.

Thu, 03/07/2019 - 14:54