Title

“We need you”: When research participation enacts a way to care for the self

1

Location

Regency Room

Start Time

30-9-2016 10:30 AM

End Time

30-9-2016 12:00 PM

Session Type

Research Paper

Abstract

Statement of purpose:

The overarching objective of this research was to examine and unpack complex experiences of participation in daily life for adolescents and young adults (AYAs) with a spinal cord injury (SCI) and their caregivers. However, the purpose of this presentation is to discuss an unanticipated finding: research engagement provided a space for caregivers to care for themselves. Data analysis will be presented to illustrate ways that narrative research can become more than a data collection tool.

Description of methods:

AYAs (n=9) with a SCI and their caregivers (n=8) participated in interviews to discuss their everyday lives and experiences relating to participation in rehabilitation and community life. AYAs represented a range of individual circumstances with varying ages (16-22 years), levels of SCI (high cervical to low thoracic), mechanisms of injury (traumatic and non-traumatic), and times since injury (4 weeks to 4.5 years). Participants were also diverse in race, ethnicity, and socioeconomic status. All caregivers were considered familial as mothers, girlfriends, or spouses of AYAs with a SCI. Individual interviews were conducted first in participants’ homes or at rehabilitation sites. AYAs and caregivers were then each invited to participate in a series of two narrative-based group interviews, held separately for AYAs and caregivers. All interviews were audio recorded and transcribed for categorical, thematic, and narrative analysis. Field notes were also kept throughout the research and used to guide analysis.

Report of results:

Data from caregivers provided compelling evidence for the extent to which commitments of confidentiality and opportunities to listen and be heard among peers can serve an unmet need in their lives. Narratives suggest great tension between attending to personal needs and the needs of their loved one with a SCI. In the face of such challenges, caregivers often compromise their desires, and they describe few (if any) confidants with whom they can discuss their experiences without fear of consequence. As a result, caregivers described feelings of fatigue and isolation. However, emic reflections on participation in this research, particularly in group interviews, indicated the potential for narrative work to create space for forging trusted relationships and finding solace. In this way, the research incidentally emulated a desired form of self-care for caregivers.

Implications related to occupational science:

This work contributes to growing attention to the power of narrative approaches in research and health care practices (e.g. Charon, 2006; Frank, 2013; Lawlor & Mattingly, 2001). Furthermore, these findings indicate a moral weight for researchers, especially when research participation is identified as an important and unique occupation for informants.

Key Words:

  • Narrative
  • Caregivers
  • Research Ethics


Discussion questions to further occupational science concepts and ideas:

- Consider complex realities and burdens of responsibility for caregivers beyond the provision of physical assistance.

- Discuss the utility and related ethical tensions of narrative research with underserved populations.

References

Charon, R. (2006). Narrative medicine: Honoring the stories of illness. New York, NY: Oxford University Press.

Frank, A. (2013). The wounded storyteller: Body, illness, and ethics. (2nd ed.). Chicago, IL: The University of Chicago Press.

Lawlor, M. C., & Mattingly, C. F. (2001). Beyond the unobtrusive observer: Reflections on researcher–informant relationships in urban ethnography. American Journal of Occupational Therapy, 55, 147–154.

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Sep 30th, 10:30 AM Sep 30th, 12:00 PM

“We need you”: When research participation enacts a way to care for the self

Regency Room

Statement of purpose:

The overarching objective of this research was to examine and unpack complex experiences of participation in daily life for adolescents and young adults (AYAs) with a spinal cord injury (SCI) and their caregivers. However, the purpose of this presentation is to discuss an unanticipated finding: research engagement provided a space for caregivers to care for themselves. Data analysis will be presented to illustrate ways that narrative research can become more than a data collection tool.

Description of methods:

AYAs (n=9) with a SCI and their caregivers (n=8) participated in interviews to discuss their everyday lives and experiences relating to participation in rehabilitation and community life. AYAs represented a range of individual circumstances with varying ages (16-22 years), levels of SCI (high cervical to low thoracic), mechanisms of injury (traumatic and non-traumatic), and times since injury (4 weeks to 4.5 years). Participants were also diverse in race, ethnicity, and socioeconomic status. All caregivers were considered familial as mothers, girlfriends, or spouses of AYAs with a SCI. Individual interviews were conducted first in participants’ homes or at rehabilitation sites. AYAs and caregivers were then each invited to participate in a series of two narrative-based group interviews, held separately for AYAs and caregivers. All interviews were audio recorded and transcribed for categorical, thematic, and narrative analysis. Field notes were also kept throughout the research and used to guide analysis.

Report of results:

Data from caregivers provided compelling evidence for the extent to which commitments of confidentiality and opportunities to listen and be heard among peers can serve an unmet need in their lives. Narratives suggest great tension between attending to personal needs and the needs of their loved one with a SCI. In the face of such challenges, caregivers often compromise their desires, and they describe few (if any) confidants with whom they can discuss their experiences without fear of consequence. As a result, caregivers described feelings of fatigue and isolation. However, emic reflections on participation in this research, particularly in group interviews, indicated the potential for narrative work to create space for forging trusted relationships and finding solace. In this way, the research incidentally emulated a desired form of self-care for caregivers.

Implications related to occupational science:

This work contributes to growing attention to the power of narrative approaches in research and health care practices (e.g. Charon, 2006; Frank, 2013; Lawlor & Mattingly, 2001). Furthermore, these findings indicate a moral weight for researchers, especially when research participation is identified as an important and unique occupation for informants.

Key Words:

  • Narrative
  • Caregivers
  • Research Ethics


Discussion questions to further occupational science concepts and ideas:

- Consider complex realities and burdens of responsibility for caregivers beyond the provision of physical assistance.

- Discuss the utility and related ethical tensions of narrative research with underserved populations.