The acceptability of Songs of Love for youth living with chronic pain.

OBJECTIVES: Music is helpful to young people in healthcare contexts, but less is known about the acceptability of music-based interventions for youth living at home with chronic pain who may be struggling to attend school and participate in social activities. The Songs of Love (SOL) foundation is a national nonprofit organization that creates free, personalized, original songs for youth facing health challenges. The aims of this study were (1) to assess acceptability of SOL from the perspective of youth with chronic pain receiving a song and singer-songwriters who created the songs, and (2) to explore the role of music more generally in the lives of young people living with pain. METHODS: Twenty-three people participated. Fifteen youth (mean age 16.8) were interviewed and received a song, and six singer-songwriters were interviewed about creating the songs. (Two additional people participated in pilot interviews.) Acceptability was assessed by (1) proportion of youth who participated in a second interview about their song and (2) results of reflexive thematic analysis (RTA) to determine acceptability. Themes addressing the role of music in the lives of youth with pain were also explored using RTA. RESULTS: The program was acceptable as 12 of 15 youth (80 %) participated in second interviews and themes met the definition of acceptability. Three themes addressing the role of music in the lives of youth living with pain were identified. CONCLUSIONS: This is the first report of the acceptability and experience of SOL and contributes to research on the benefits of music for pain management.

Genetic risk for Huntington Disease and reproductive decision-making: A systematic review.

Huntington Disease (HD) is an incurable autosomal dominant single gene neurodegenerative disorder. Typical onset is between 30 and 40 years and characterised by motor difficulties, cognitive impairment, and behavioural and personality changes. The availability of reproductive testing means that affected and at-risk individuals can make reproductive decisions with genetic risk in mind. We aimed to summarise the literature on reproductive decision-making in the context of HD risk in terms of outcomes and the subjective experiences of at-risk individuals. Five databases were searched. Findings were synthesised using Framework analysis to identify common factors across results of quantitative and qualitative studies. Twenty five studies met inclusion criteria. Framework analysis identified the following key areas: 'The relationship between reproductive intentions and HD genetic risk', 'Views on assistive options', 'Complexity and challenges in reproductive decision-making', 'Actual reproductive outcomes', and 'Other factors influencing reproductive decision-making'. Quality of included studies was mixed. Reproductive decision making in the context of HD risk was found to be a complex and emotionally challenging process. Further research is required into reproductive decision-making and outcomes among those not utilising assistive options, and in developing a model of reproductive decision-making in HD.