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Interest in the applications of music in health, social care and community settings are growing worldwide. Rare diseases are a major challenge for public health, particularly in paediatric populations. Previous research has demonstrated music and music medicine benefit children and young people’s health and wellbeing; however, this is under-researched in the paediatric rare disease context. This scoping review was conducted to explore music therapy and music medicine as tools to support children with rare diseases’ health and wellbeing within healthcare settings. The review investigated the current research on how music is used for children and young people with rare diseases and complex conditions and synthesised the resulting evidence. Results from this review suggest that music therapy and music medicine are beneficial for the health and wellbeing of children with rare diseases and complex conditions, including reduced anxiety, stress and pain during clinical procedures, and increased communication, social and coping skills and enhanced quality of life.

Objectives: The objectives of this project were to collect and analyze clinical governance documents related to family-centred care and cardiac arrest care in Canadian EMS organizations; and to improve the family-centredness of out-of-hospital cardiac arrest care through experience-based co-design. Methods: We conducted qualitative document analysis of Canadian EMS clinical governance documents related to family-centred and cardiac arrest care, combining elements of content and thematic analysis methods. We then used experience-based co-design to develop a family-centred out-of-hospital cardiac arrest care policy and procedure template. Results: Thirty-five Canadian EMS organizations responded to our requests, representing service area coverage for 80% of the Canadian population. Twenty documents were obtained for review and six overarching themes were identified: addressing family in event of in-home death, importance of family, family member escort, provider discretion and family presence discouraged. Informed by our qualitative analysis we then co-designed a policy and procedure template was created that prioritizes patient care while promotes family-centredness. Conclusions: There were few directives to support family-centred care by Canadian EMS organizations. A family-centred out-of-hospital cardiac arrest care policy and procedure template was developed using experience-based co-design to assist EMS organizations improve the family-centredness of out-of-hospital cardiac arrest care.

ABSTRACT Although medical and technological advances have extended survival rates through ever more effective acute clinical management for people with spinal cord injuries, the links between rehabilitation and recovery are [...]

BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.ConclusionsAccess to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

AbstractDesign has a potential to envision alternative futures for health care through new forms of innovation. In this paper, we propose a strategic framework for fostering a culture of design thinking for social innovation in health care. Drawing upon the theory of design (and its thinking), in conjunction with global and national health care strategies and policies, we critically reflect on pedagogical approaches for enhancing the curriculum in design as a means of discussing the need for new thinking in health. Findings to date suggest that new mechanisms of knowledge acquisition, application, and exploration are needed to address the complex challenges facing social and health care. Referring to the national health care strategies, connections are made with design thinking, social innovation, health and social care to facilitate a transition from applying design as a process to applying design as a strategy for cultural transformation.

ObjectiveTo examine the psychometric properties of the Community Integration Questionnaire (CIQ) in large samples of individuals with spinal cord injury (SCI).DesignLongitudinal 12-month survey study.SettingNation-wide, community dwelling.ParticipantsAdults with SCI: 627 at Time 1, 494 at Time 2.InterventionsNot applicable.Outcome measuresThe CIQ is a 15-item measure developed to measure three domains of community integration in individuals with traumatic brain injury: home integration, social integration, and productive activity. SCI consumer input suggested the need for two additional items assessing socializing at home and internet/email activity.ResultsExploratory factor analyses at Time 1 indicated three factors. Time 2 confirmatory factor analysis did not show a good fit of the 3-factor model. CIQ scores were normally distributed and only the Productive subscale demonstrated problems with high (25%) ceiling effects. Internal reliability was acceptable for the Total and Home scales, but low for the Social and Productive activity scales. Validity of the CIQ is suggested by significant differences by sex, age, and wheelchair use.ConclusionsThe factor structure of the CIQ was not stable over time. The CIQ may be most useful for assessing home integration, as this is the subscale with the most scale stability and internal reliability. The CIQ may be improved for use in SCI by including items that reflect higher levels of productive functioning, integration across the life span, and home- and internet-based social functioning.

Explore the views and experiences of quality of care provided during a first postnatal visit from the perspectives of mothers and public health nurses.

The Consumer–Professional Partnership Program (CPPP) was developed to increase patient participation in the education of nurses and other health care professionals. Its goal is to inform nurses about disability and health issues from the perspective of people with spinal cord injury. This article discusses the development of this program and the first experiences with its implementation. Forty-three nursing professionals took part in CPPP training. Initial participant responses were positive, especially with regard to hearing from consumers about care preferences, barriers to care, and ways to improve patient–provider interaction.

This paper will discuss the theoretical design considerations and the practical integration of quantitative and qualitative methods in disability and rehabilitation research, which have gained recent popularity among researchers of various disciplines. Whereas quantitative experimental and survey approaches allow researchers to draw generalizable conclusions that apply to a particular population as a whole, qualitative methods capture the depth of respondents' experiences in their own words. Qualitative methods may be used to explore new topical areas prior to implementing a population‐based survey, or they may follow quantitative approaches to explain findings in greater detail. We will discuss research findings from two recent studies of rehabilitation industry professionals and people with physical disabilities to exemplify the utility of mixed‐method designs in disability and rehabilitation research. The article will conclude with recommendations for rehabilitation nursing researchers to apply both qualitative and quantitative methods in their research practice.