Lessons learned from the adaptation of the Reflective Functioning Questionnaire (RFQ) for Dutch people with mild to borderline intellectual disabilities.

BACKGROUND: People with mild to borderline intellectual disabilities (MBIDs) face challenges in social functioning, possibly as a result of limited mentalising abilities such as reflecting on the behaviour of themselves and others. Reflective functioning in people with MBIDs has not yet been investigated due to a lack of instruments. The Reflective Functioning Questionnaire (RFQ) is a seemingly easy adaptable, short self-report questionnaire. The aim of the present, explorative study was to adapt the RFQ for people with MBIDs and investigate the psychometric properties and correlations with other mentalising related constructs. The formulation of the items was adapted to the target group and items were added to broaden the scope towards reflection on both the self and other. METHOD: Participants were 159 adults with MBIDs who completed a Dutch-translated and easy-to-read RFQ with five supplemental items, a questionnaire for autistic traits, a self-report questionnaire assessing perspective taking and two performance-based measures assessing emotion recognition and Theory of Mind. RESULTS: Confirmatory factor analysis confirmed the factor structure of the RFQ and revealed a two-factor structure with a Self and Other subscale. Generally satisfactory internal consistency and test-retest reliability were found. Explorative results showed correlations of the RFQ-8 and RFQ subscales with autistic traits and between the RFQ Other and perspective taking. CONCLUSIONS: This explorative study is the first testing psychometric properties of the RFQ as a self-report questionnaire for assessing reflective functioning in adults with MBIDs. This step is relevant in gaining more scientific knowledge on assessing mentalising in people with MBIDs.

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.

BACKGROUND: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. METHODS: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. RESULTS: In Round 1, components were rated as (very) relevant by 70-98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67-97% (M = 90%) and feasibility ratings 66-86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. CONCLUSION: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

BACKGROUND: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. METHOD: We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. RESULTS: The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. CONCLUSIONS: PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

Physician-Reported Symptoms and Interventions in People with Intellectual Disabilities Approaching End of Life.

BACKGROUND: Insights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs). OBJECTIVES: We aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death. MEASUREMENTS: In this study, 81 physicians for people with IDs (ID-physicians) completed a retrospective survey about their last patient with IDs with a nonsudden death. RESULTS: On average, patients suffered from three of the eight ESAS symptoms. Fatigue (83%), drowsiness (65%), and decreasing intake (57%) were most reported. ID-physicians reported a median number of four interventions. Interventions were mostly aimed at somatic problems, such as pain and shortness of breath. Burdensome interventions such as surgery or artificial respiration were least or not reported. Palliative sedation was provided in a third of all cases. CONCLUSION: Although ID-physicians reported a variety of their patients' symptoms and of provided interventions at the end of life, using adequate symptom assessment tools suitable for people with IDs and continuous multidisciplinary collaboration in palliative care are essential to capture symptoms as fully as possible.

Physicians' identification of the need for palliative care in people with intellectual disabilities.

BACKGROUND: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care. AIMS: We aimed to explore how the need for palliative care is recognized in people with ID. METHODS AND PROCEDURES: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands. OUTCOMES AND RESULTS: Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process. CONCLUSIONS AND IMPLICATIONS: Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.

Behavioral problems in children with motor and intellectual disabilities: prevalence and associations with maladaptive personality and marital relationship.

Prevalence rates of behavioral problems in children with motor disabilities are commonly based on questionnaires developed for a general population (e.g., Child Behavior CheckList). These questionnaires do not take into account lower levels of intellectual functioning. The first aim of this study was to examine the prevalence of parent-reported and daily caretaker-reported behavioral problems in children with motor and intellectual disabilities (MID) using the Developmental Behavior Checklist. Second, we investigated whether behavioral problems were related to sex and age. Our third and fourth aim were to determine whether behavioral problems are related to maladaptive personality traits and to marital stress and conflict. Participants were 101 Flemish children with MID (mean age=14 years 6 months). For total behavioral problems, we found prevalence rates of 18% and 8% based on parent and daily caretaker reports, respectively. Based on parent reports, twenty seven percent of the children with MID exhibited anxiety problems. Behavioral problems were not related to sex. Older children showed fewer behavioral problems than younger children. Multiple hierarchical regression analyses revealed that lower scores on Compulsivity and higher scores on Emotional Instability and Disagreeableness were related to behavioral problems. In addition to personality traits, stress and conflict in the marital relationship was also positively associated with behavioral problems. Given the importance of behavioral problems in children with MID, this study is of theoretical and clinical interest and has the potential to inform targeted clinical interventions.