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Journal article

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

Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers’ views and experiences in the UK

Background There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. Methods A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi‐structured interviews with two family carers, eight paid carers and eight healthcare professionals.

Thu, 01/14/2021 - 10:04

Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study (RP411)

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms.

Thu, 01/14/2021 - 09:56

Supporting family carers via the Admiral Nurse Dementia Helpline: reflection on a case study

In the UK, the quality of post-diagnostic care and support for people with dementia and their family carers is variable and depends on the availability of services in each person's local area. This article considers the support services available for families affected by dementia and discusses how telephone helplines can assist those who may have no access to other types of support. It presents a case study describing a call to the Admiral Nurse Dementia Helpline, a service run by nurses with expertise in dementia care and provided by the charity Dementia UK.

Thu, 01/14/2021 - 09:46

Supporting family carers of children and adults with intellectual disability

Summary: The extra strains experienced by families who care for a relative with intellectual disabilities are well documented. The provision of overnight (respite) breaks or supports in the home are common ways of supporting family carers. Often demand exceeds supply. Using data from a national register in Ireland, child and adults who received overnight breaks and in-home support were identified along with the characteristics that distinguished them from families that did not have these services.

Thu, 01/14/2021 - 09:39

Supporting family caregivers of Veterans: Participant perceptions of a federally-mandated caregiver support program

Objectives: To understand patients' and caregivers' experiences with and perceptions of a federally-mandated program within the Department of Veterans Affairs (VA) that provides educational and monetary support to family caregivers of post-9/11 Veterans.; Methods: Twenty-six Veterans and their family caregivers were recruited to participate in individual and dyadic interviews. Interviews lasted between 60 and 90 min and took place between August 2016 and July 2018 in Oregon and Louisiana.

Thu, 01/14/2021 - 09:31

Support needs of Canadian adult siblings of brothers and sisters with intellectual/developmental disabilities

Background: It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, "The Sibling Collaborative", a grass‐roots initiative, conducted a needs assessment.

Wed, 01/13/2021 - 14:49

Strengthening the educational inclusion of young carers with additional needs: an eco-systemic understanding

This research explores the eco-systemic factors impacting on the educational inclusion of young carers (UK) that defines a young carer as anyone under the age of 18 years old who provides, or intends to provide, care for another person of any age. The literature has indicated that young carers with additional needs are a population more vulnerable to poorer outcomes in educational attainment, employment opportunities, and psychological wellbeing.

Wed, 01/13/2021 - 14:44

Stress and well‐being of unpaid carers supporting claimants through disability benefit assessments

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design.

Wed, 01/13/2021 - 14:40

Stigma in psychogenic nonepileptic seizures

Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it. Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics.

Wed, 01/13/2021 - 14:34