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Palliative care

Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Background: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.; Methods: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention.

Thu, 01/31/2019 - 12:54

Comfort level of caregivers of cancer patients receiving palliative care

Objective: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient's functional status and symptoms.; Method: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used.

Thu, 01/31/2019 - 12:28

Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)

Background: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437).

Thu, 01/31/2019 - 11:57

Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279).

Thu, 01/31/2019 - 11:29

Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention

Background An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework.

Wed, 01/30/2019 - 18:30

Interference Between Family Caregivers' Mental Disorders and Their Estimates of Quality of Dying and Death (QODD) of Their Loved Ones

Background: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders.; Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones.; Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-

Wed, 01/02/2019 - 12:52

Hope as determinant for psychiatric morbidity in family caregivers of advanced cancer patients

Objective: Home care of advanced cancer patients often has adverse effects on physical and mental health of family caregivers. Little is known about the long-term effects of continuous caregiving on mental health as compared with the effects of bereavement. The objectives of this study were to describe the course of psychiatric morbidity in family caregivers over time, to identify the impact of the patients' death on caregivers, and to explore possible predictor variables for psychiatric morbidity.

Mon, 11/19/2018 - 18:07

End-of-life care: A qualitative study comparing the views of people with dementia and family carers

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed.

Mon, 11/19/2018 - 16:27

"I didn't want to be in charge and yet I was": Bereaved caregivers' accounts of providing home care for family members with advanced cancer

Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving.

Wed, 10/31/2018 - 15:33

Challenges in supporting lay carers of patients at the end of life: results from focus group discussions with primary healthcare providers

Background: Family caregivers (FCGs) of patients at the end of life (EoL) cared for at home receive support from professional and non-professional care providers. Healthcare providers in general practice play an important role as they coordinate care and establish contacts between the parties concerned. To identify potential intervention targets, this study deals with the challenges healthcare providers in general practice face in EoL care situations including patients, caregivers and networks.

Wed, 10/24/2018 - 09:27

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