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Published online by Cambridge University Press: 13 July 2023
International psychosocial support guidelines reflect consensus on support principles and interventions. However, no consensus exists on what recipients consider important elements of service delivery. Within two contexts – after a potentially traumatic event (PTE) and people with Spinal Muscular Atrophy (SMA)–the aims were to contribute to (1) understanding which psychosocial support aspects are considered important by recipients and relevant stakeholders; (2) developing instruments to test and integrate those aspects in practice, in order to evaluate the quality of psychosocial support from the recipient’s perspective.
Concept mapping was used to achieve consensus on key themes of psychosocial support. These were operationalized in surveys and pilot-tested, conforming to the Consumer Quality Index. This determines the importance and needs for improvement.
Concept mapping resulted in eight key themes within the PTE context and six in the SMA context. PTE survey (N= 132) results showed key themes “an approach that starts from the needs and capacities of the affected one” and “monitoring individuals affected and initiating follow-up where needed” were most important. Key theme “providing information on common emotional reactions” received the highest score of perceived need for improvement. SMA survey (N= 57) results showed key themes “an approach that incorporates all aspects of a human being” and “a respectful approach and awareness of personal boundaries” as most important. The perceived need for improvement of the key theme “availability and accessibility of quality information” was ranked the highest.
The similarities between both contexts support the notion that there are universal aspects of psychosocial support. Simultaneously, the context-specific idiosyncrasies found underscore the necessity to adapt to context. The surveys have the potential to contribute to a growing toolbox of quality evaluation instruments.
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