Background: Persons with profound intellectual and multiple disabilities (PIMD) are vulnerable when it comes to experiencing pain. Reliable assessment of pain-related behaviour in these persons is difficult. Aim To determine how pain items can be reliably scored in adults with PIMD.Methods: We developed an instruction protocol for the assessment of pain-related behaviour in four phases. We used videos of 57 adults with PIMD during potentially painful situations. The items were assessed for inter-rater reliability (Cohen's kappa or percentage of agreement).Results: The developed instruction protocol appeared to be adequate. Twelve items had satisfactory inter-rater reliability (n = 9: .30–1.00; n = 3: 85%–100%).Discussion: Calibrating and adjustments to the instructions and item set appeared to be crucial to reliably score 12 items in adults with PIMD. Further research should focus on creating an assessment instrument based on these reliably scored items.
Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate patterns according to participant characteristics, observed level of activity, days, and time of day. The heart rate patterns of 24 participants with PIMD were measured continuously using a heart rate monitor for 8 h·d for a period of 6 days. Physical activity levels were measured with questionnaires. Data were analyzed using multilevel analysis. The results indicate that the participants use only 32% of their heart rate reserve over 6 days. The intensity of heart rate reserve ranged from 1 to 62%. On a given day, wide ranges in heart rates between participants and within persons were observed. Between days, only small ranges in the heart rate were found. The participants could be grouped into 4 classes according to their heart rate. In addition, factors such as time of day, physical activity, and age are significantly related to heart rate patterns. In conclusion, this study is an important first step in exploring activity patterns based on heart rate patterns in persons with PIMD. The participants used relatively small fractions of their heart rate reserves. Time of day and age appear to have a considerable influence on heart rate patterns. The observed classes in heart rate patterns suggest that other probably more personal and psychosocial factors have significant influences on heart rate patterns, as well
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