Background: Objective assessment of pain-related behaviours is crucial in adults with profound intellectual and multiple disabilities. No standardised pain observation instrument that specifically focuses on this target group is currently available. A previous study identified 12 pain-related behaviours in these persons. This study aimed to develop a valid and reliable instrument based on these 12 pain-related behaviours to assess pain in these adults in daily situations. Method: Videos of 91 adults with profound intellectual and multiple disabilities in potentially painful daily situations were scored using the 12 pain-related behaviour items. Mokken scale analysis was used to determine the construct validity of these items. Results: Analysis resulted in a 9-item scale (H =.46, Rho =.70), which appeared to be sample independent for the variables of sex, age and level of motor functioning. Conclusion: A scale containing 9 items (APOS-PIMD) with reasonable construct validity and sufficient reliability was developed, which can be used to measure pain in adults with profound intellectual and multiple disabilities in daily situations.
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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.
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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.
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