Methods

Research Objectives:

1) To explore the experiences of older people living with dementia and their carers participating in the Sharing Dance program as they relate to understanding the multiple dimensions of social inclusion across the care continuum in urban and rural settings

2) Assess the effectiveness of the multi-modal delivery of the Sharing Dance program as it relates to enhancing social inclusion processes and outcomes across the care continuum in urban and rural settings

3) Identify the challenges of expanding (scaling up) the Sharing Dance program as they relate to experiential, programmatic and contextual factors that influence the success or failure of the program as it relates to social inclusion across the care continuum in urban and rural settings

The following research methods will focus on participants’ experiences and what they can tell us about social inclusion and how social inclusion among people living with dementia can be supported:

This study involves a qualitative sequential pilot study of the innovative Baycrest NBS Sharing Dance Seniors program underway in non-metropolitan regions of two Canadian provinces, Peterborough, Ontario and Brandon (Westman) Manitoba. It focuses on the remotely-instructed delivery of the program in care facilities, community centres and households. The study involves five phases of observations, diaries, focus groups and interviews with program participants (people living with dementia), carers, coordinators, instructors and volunteers as well as critical reflections among research investigators and knowledge users. NVivo based thematic and narrative analyses of the qualitative data will produce new knowledge about the experiences, effectiveness and challenges of the dance program that will inform understanding of whether and in what ways it increases social inclusion and quality of life for older people living with dementia and carers. The findings will identify opportunities for program expansion and support the further development of arts-based approaches.

Observations

The observations include detailed descriptions of the actions, expressions, and interactions of participants in the program to inform our analysis of multiple dimensions of social inclusion, particularly those related to social relations, mobility, and safety. For example, observations focus on the degree and nature of social interaction as well as safety (e.g., comfort with dance moves, fellow participants and the facilitator).

“Near the end we were all getting better at it and that made quite a difference.”

Brandon Participant

Diaries

Diaries with program participants are used to explore the lived experiences of the program as they relate to processes and outcomes of social inclusion People living with dementia and carers record their personal experiences throughout the program in a weekly semi-structured journal using written, oral and/or video communication (paper booklets and iPads). Researchers assist people living with dementia with their diaries after the program, as needed. Diary questions focus on elucidating elements of social inclusion within the participants’ and carers’ experiences (e.g., changes in social connections over the course of the program, barriers to participation due to transportation and mobility issues, financial issues and safety concerns) to enhance the other data collected regarding social inclusion in depth and with contextual sensitivity.

Focus Groups

Focus groups with program participants and carers as well as with program coordinators, instructors and volunteers are moderated regarding the effectiveness of the program delivery and the challenges of implementing the program. This allows for an examination of the breadth of experiential, programmatic and contextual factors that influence the effectiveness of the program to improve social inclusion. The focus groups explore similarities and differences among the modes of delivery, care settings, and geographic locales, and include discussion questions about broader contextual influences on social inclusion (e.g., impact of changing economic circumstances and community dynamics such as volunteerism on access to services).

Interviews

Interviews with program participants and carers as well as with program coordinators, instructors and volunteers will explore the effectiveness of the multi-modal program delivery and identify the challenges of implementing the program (Objectives 2 and 3). In-depth, 90-minute audio-recorded interviews with a sub-set of program participants, and all of the coordinators, instructors and volunteers will explore the success and/or failure of the program in relation to experiential, programmatic and contextual factors that influence the effectiveness of the program to improve social inclusion. Semi-structured interview questions will explore in greater depth the key issues and connections among the multiple dimensions of social inclusion that emerge from the focus group discussions.

Critical Reflections

Critical reflections among the research investigators and knowledge users will serve to identify opportunities and promising practices for expanding the program in various types of community and collaborative settings (Objective 3). In-depth reflections regarding the challenges and opportunities experienced and/or observed by the research team (comprising the investigators, knowledge user collaborators from NBS, and research personnel) are recorded as part of weekly one-hour meetings to build a reflective dataset as the program expands through the pilot phases (i.e., P1 to P4, B1 to B4). A semi-structured guide is designed to elicit conceptual, methodological, empirical and applied issues for discussion and critical reflection.

Data Analysis

Sequential and iterative qualitative data analysis will take place during the multi-phased data collection to support the refinement of research instruments as well as communication of preliminary findings with community partners. Management and analysis of all phases of the study will be supported by Nvivo 11 software. Thematic content analysis of text-based observations as well as diaries will inform the focus group discussions of the effectiveness and challenges of the Sharing Dance Seniors program. Building on the observational and diary phases, thematic analyses of focus group transcripts inform the in-depth inquiry of emergent social inclusion themes in interviews. Thematic analysis of the recorded researcher and knowledge user reflections will provide the foundation for narratives of promising practices relating to the development and implementation of the research design as well as the implementation and expansion of the dance program. These analyses will inform a series of knowledge exchange reports and seminars for each phase of the pilot studies that will be disseminated to participants, community leaders and knowledge users (see Table 1).