Journal article

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments.

Aim: To psychometrically test the Spanish version of the Caregiver Preparedness Scale (CPS) and document the preparedness level of caregivers. Design: A descriptive and validation study.MethodPurposive sampling method was used to select 171 family caregivers Spain. The scale was cross‐culturally adapted through a process that included translation, comparison with versions in other languages and back‐translation, review, pre‐testing and validity, and reliability tests.

Aim: This study aimed to develop a Family Concordance Competency Scale for Family System Units (FCCS-Fa) for families with children having chronic disease, and to evaluate its reliability and validity.

Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress.

Objective: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. Methods: One seventy nine youth with type 1 diabetes (ages 12–18 years) and caregivers completed the DFCS‐Revised as well as assessments of adherence, psychosocial functioning, and diabetes‐related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample.

Introduction: Caring for people with cognitive problems can have an impact on informal caregivers’ health and well-being, and especially increases pressure on healthcare systems due to an increasing ageing society. In response to a higher demand of informal care, evidence suggests that timely support for informal caregivers is essential. The New York University Caregiver Intervention (NYUCI) has proven consistent effectiveness and high adaptability over 30 years.

Background: Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%–90% of the care required by community‐dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs.

Aims: The aim is to develop and test an integrative model based on the stress and coping paradigm and the existential paradigm, to explain positive aspects of caregiving among family caregivers of persons with dementia. Design: A mixed method research, comprises a longitudinal exploratory study and a descriptive qualitative study. Methods: A total of 370 family caregivers will be recruited from community elderly centres.

Background: Patients and carers should be actively involved in patient safety and empowered to use person‐centred approaches where they are asked to both identify safety concerns and partner in preventing them. Objectives: The aim of this study was to co‐design a patient safety guide for primary care (PSG‐PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer.

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm.