Patients

Background: Although cancer patients experience distressing symptoms and health-related changes in their quality of life, they may report positive emotional states. The lives of informal caregivers of cancer patients may also be affected by the patient's cancer diagnosis; however, they may also find benefits in their experiences. Noticeable changes are reported in personal priorities after an oncologic diagnosis that can lead individuals to restructure their values and the way they perceive life.

Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients.

Introduction In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program.

Objective: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers’ experiences and perspectives toward making surrogate decisions is needed.

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention.

[...]I would like to revise his statement slightly, to read: ‘We acknowledge that family and significant others can play a significant role in the process of decision making in some patients from non‐Western or Western cultural backgrounds more or less.’ [my emphasis]. [...]we equally know that doctors do not fulfil the obligation of medical information provision from the perspective of Chinese patients.

A significant number of informal carers look after people who have dementia. Women's caring experiences are well documented. However, a substantially smaller amount of research exists specifically investigating the male carer perspective. This literature review explores older husbands' experiences of caring for their wives who have dementia. The findings suggest that husbands are committed to their caring role but can feel socially isolated. The caring role of older men has altered the dynamic in the marriage.

Background: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation.

Background: Contemporary health policies call for consumers to be part of all aspects of service planning, implementation, delivery and evaluation. The extent to which consumers are part of the systemic decision-making levels of palliative care appears to vary between and within services and organisations. Aim: The aim of this systematic review is to develop understandings about consumer and carer leadership in palliative care. Design: A systematic, narrative synthesis approach was adopted due to the heterogeneity of included studies.

Context: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. Objectives: The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. Methods: This is a systematic review of reviews.