Objective: The Carer Support Needs Assessment Tool (CSNAT) was developed in the UK and has been shown to be effective to assess and address support needs of family carers of terminally ill patients at home. In German language, there is a lack of an evidence-based comprehensive assessment tool for family carers in palliative home care. The objectives of this study were to translate and develop a culturally adapted version of the CSNAT for a German-speaking context including the assessment of feasibility, face, and content validity.
Method: A translation and validation study was conducted in three steps: (1) translation of CSNAT following International Society for Pharmacoeconomics and Outcomes Research criteria; (2) cognitive testing in five German-speaking regions in Germany, Austria, and Switzerland with 15 family carers; and (3) pilot testing in palliative home care services. Evaluation was by telephone interviews with those involved in the assessments (family carers, health care professionals) and a focus group discussion with the health care professionals. Data were analyzed using content analysis.
Results: The regional idiomatic variety raised challenges in the process of translation. Cognitive testing revealed semantic, conceptual, syntactic, and idiomatic issues. During the pilot, 25 assessment conversations were held. Carers reported that the German version called "KOMMA" was brief, easy to understand and to complete, and helpful. They appreciated that the items adequately addressed their support needs and reminded them of their own strengths and resources. Health care professionals observed good acceptance by carers, the expression of unexpected patterns of needs, and extensive assessment conversations, but some raised concerns that the assessment process might shift attention to carers' needs at the cost of the patients.
Significance Of Results: A multi-step process of translation, cognitive testing, and pilot testing led to a culturally well-acceptable German tool (KOMMA). Comprehensibility, acceptance, face, and content validity, as well as feasibility were demonstrated.
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http://dx.doi.org/10.1017/S1478951519000671 | DOI Listing |
Front Child Adolesc Psychiatry
September 2024
Department of Psychiatry, University of Massachusetts Chan Medical School, Worcester, MA, United States.
Introduction: Anxiety disorders are common, distressing, and impairing for children and families. Cognitive-behavioral interventions targeting the role of family interactions in child anxiety treatment may be limited by lack of attention to antecedents to parental control; specifically, internal parent factors such as experiential avoidance and cognitive fusion. This pilot study evaluates the preliminary efficacy of a group-delivered caregiver treatment program, ACT for Parents of Anxious Children (ACT-PAC) that targets parental experiential avoidance, cognitive fusion, and child internalizing symptoms.
View Article and Find Full Text PDFFront Child Adolesc Psychiatry
October 2024
Psychoeducation Department, Sherbrooke University, Longueuil, QC, Canada.
Introduction: Children with problematic sexual behaviors (PSBs) can benefit, along with their parents or caregivers, from specialized therapeutic services to limit the manifestation of these behaviors. However, for some families, mobilization for therapy represents a significant challenge since a considerable proportion do not complete the therapy intended for them. The present study aims to identify the factors associated with therapy completion, thus allowing a deeper understanding of how to support children and more broadly families to complete their therapeutic process.
View Article and Find Full Text PDFJ Intellect Dev Disabil
September 2024
Living with Disability Research Centre, La Trobe University, Bundoora, Australia.
Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022.
View Article and Find Full Text PDFJ Intellect Dev Disabil
December 2024
Department of Ethics, Law & Humanities, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands.
Background: Parents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge.
Method: We conducted semi-structured interviews with parents ( = 11) about their tacit knowledge of their child, based upon video recordings they made of their child's behaviour, and analysed the data thematically.
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