A5039790941- Family and Disability Support Research
- Down syndrome and intellectual disability research
- Disability Rights and Representation
- Ethics and Legal Issues in Pediatric Healthcare
- Autism Spectrum Disorder Research
- Childhood Cancer Survivors' Quality of Life
- Innovations in Medical Education
- Healthcare Decision-Making and Restraints
- Genomics and Rare Diseases
- Disability Education and Employment
- Assistive Technology in Communication and Mobility
- Clinical Reasoning and Diagnostic Skills
- Infant Development and Preterm Care
- Patient Dignity and Privacy
- Palliative Care and End-of-Life Issues
- Chronic Disease Management Strategies
- Family Support in Illness
Amsterdam University Medical Centers
2019-2024
University of Amsterdam
2017-2024
Background: The objective of this study was to provide an overview concepts, methods assessment and assessors in empirical studies on quality life (QoL) persons with Profound Intellectual Multiple Disabilities (PIMD).Method: A narrative literature review conducted by searching electronic databases until December 2016, the included were then analysed thematically.Results: Twenty-one articles analysis. Multidimensional concepts QoL consisting both subjective components found, although used...
Background Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents.Method To explore how parents persons PIMD view siblings' role regarding future for family member, we interviewed eight 13 seven analysed data thematically.Results While some expected that a would burden sibling unfairly, most anticipated such reported no concerns about this responsibility. Despite lack explicit...
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 use, we aimed to explore this parental knowledge. We conducted semi-structured interviews parents (n = 11) their child, based upon video recordings they made child's behaviour, analysed data thematically. Parents described as capacity read subtle signs, or sense "just know" situation. They had developed because shared history...
Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives on good or poor Quality Live (QoL) persons PIMD have hardly been explored. To explore perspective QoL PIMD, we performed qualitative study, conducting semi-structured interviews eleven thematically analysed them. In interviews, these described examples QoL. Good was mostly in emotional terms such as happiness, pleasure...
Background The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing parents express concerns about being possibly outlived by their child PIMD. However, little known the nature these concerns.Method We interviewed 27 persons PIMD analysed data thematically, to explore parents' child.Results Most hoped outlive related this expectation a decreased quality (QoL) child, when they would have passed away. uncertainty who fulfil parental roles in...
BackgroundQuality of Life (QoL) may be a factor in physicians' decisions on treatment persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception physicians QoL PIMD.MethodWe conducted semi-structured interviews seven experienced treating PIMD, thematically analysed them identified clusters related elements QoL.ResultsEmotional, physical relational were found. Physicians named mainly emotional to describe good QoL, poor they emphasised role context QoL. In...
The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to death, made on their behalf during later lives. However, little is known about how parents make such for ageing child.Explore parents' views death child PIMD.We interviewed 27 PIMD (≥ 15 years) analyzed data thematically.Parents who were convinced that child's quality (QoL) was good, stated "deserved same treatment as any other...
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little known about the actual situation of persons PIMD without parents.To explore how parental roles are taken over by others, when have outlived parents, affects care support for- quality life (QoL) PIMD.We interviewed seven siblings, six professionals (N = 13) involved in for analysed data thematically.Siblings described a lack family...
Assessing Quality of Life (QoL) persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning PIMD. The perspectives parents children PIMD on the assessment their have not been studied.To explore children.We conducted a qualitative study, forming three focus groups 22 to views what necessary assess subsequently, who best suited QoL.Parents describe long-term relationship assessor family...
Abstract Background Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members care professionals in exploring together how parental roles may be taken over by others when necessary. Method We conducted mixed methods study, focus on the qualitative data, describe evaluate three conversations. Results Family ( n = 22) of persons PIMD who live residential facilities 9)...
The objective of this study is to describe and evaluate understandings dignity persons with profound intellectual multiple disabilities. Intrinsic cannot be lost inherent being a human. Also, the extent which these have enough positive experiences (individual dignity), in their relationships familiar others (relational or unknown (societal dignity). While intrinsic sometimes fails include family members, other are gradual, means that can lose dignity. express concern: life person severe...
Abstract In this paper, we discuss the applicability of consensus document, prepared by Special Interest Research Group on quality life (QoL) International Association for Scientific Study Intellectual Disabilities in August 2000, persons with Profound and Multiple disabilities (PIMD). We compare our findings from previous empirical research some elements themes principles document. will reflect (1) domains QoL mentioned (2) assessment proxies. recommend reflection following aspects when...
Patients with profound intellectual and multiple disabilities (PIMD) cannot clearly express themselves. Therefore, tacit knowledge (TK) is crucial in caring for individuals PIMD, while it possibly also plays a significant role medical consultations. A qualitative inductive, thematic analysis was performed of 14 audio-taped consultations disability physicians patients PIMD to explore how TK represented considered between parents physicians. Parents conveyed their by sensing perceptions...