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Who are the ostomy patients and caregivers attending Portuguese community pharmacies? A cross-sectional study

Background In 2017, ostomy patients gained access to ostomy products in community pharmacies that are fully reimbursed by the Portuguese National Health Service. This impacted the daily lives of people with ostomy and opened a new market of products and services for pharmacies. However, little is known about the sociodemographic and clinical profile of ostomy patients. This study aims to characterize people with ostomy and their caregivers, evaluate access and satisfaction with the pharmacy and explore participants' expectations regarding services and counselling.

Fri, 01/22/2021 - 16:05

A technology-enhanced model of care for transitional palliative care versus attention control for adult family caregivers in rural or medically underserved areas: study protocol for a randomized controlled trial

Background: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care.

Fri, 01/15/2021 - 11:57

TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone

Background: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. Methods: This study was a Medical Research Council framework phase two randomized controlled trial.

Thu, 01/14/2021 - 14:56

Supporting the patients with advanced cancer and their family caregivers: what are their palliative care needs?

Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes.

Thu, 01/14/2021 - 10:19

Single-institution cross-sectional study to evaluate need for information and need for referral to psychooncology care in association with depression in brain tumor patients and their family caregivers

Background: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated.; Methods: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers.

Wed, 01/13/2021 - 13:26

Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports.

Sun, 12/13/2020 - 17:39

Predictors of mental health problems in formal and informal caregivers of patients with Alzheimer's disease

Background: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden.

Sun, 12/13/2020 - 16:41

Perception of service users and their caregivers on primary care-based mental health services: a qualitative study in Nepal

Background: Integration of mental health services into primary health care systems has been advocated as a strategy to minimize the tremendous mental health treatment gap, particularly in low- and middle-income countries. Barriers to integration of mental health into primary health care have been widely documented; however, very little is known about the perception of service users and their caregivers on primary care-based mental health services.

Sat, 12/12/2020 - 14:37

Patient and caregiver perspectives on early identification for advance care planning in primary healthcare settings

Background: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups.

Sat, 12/12/2020 - 14:15

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

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