Title

Drawing on Multiple Perspectives to Understand Roles and Occupations of Caregiving with Spinal Cord Injury

1

Location

Studio 1

Start Time

20-10-2017 9:30 AM

End Time

20-10-2017 11:30 AM

Session Type

Research Paper

Abstract

Statement of Purpose: The overarching objective of this research was to examine and unpack experiences in daily life for adolescents and young adults (AYA) with a spinal cord injury (SCI) and their caregivers in order to further understandings of relationships among identity, development, and well-being. Within this research, the purpose of this analysis was to understand roles and occupations of caregiving as they are realized in individual lives.

Description of Methods: AYAs aged 15-22, who acquired a SCI within the previous five years, were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County. With expressed interest in the study, AYAs were invited to nominate a caregiver to also participate. In total, 17 individuals were enrolled (9 AYAs, 8 caregivers), with varying ages, levels and mechanisms of SCI, races, ethnicities, and socioeconomic statuses. Data was collected in two phases with narrative and phenomenological methods. In Phase I, participants were seen in their homes or communities for an individual interview and a series of two group interviews, held separately for AYAs and caregivers. A diverse subset of Phase I participants were identified through iterative data analysis; these individuals (n=6) enrolled in Phase II, which involved additional individual interviews (2-4/AYA, 1-3/caregiver) and activity observations (1/AYA). All interviews were audio recorded and transcribed verbatim for coding in NVivo 11. Data were analyzed categorically, thematically, and narratively within- and across-cases.

Report of Results: Perspectives of individuals receiving and giving care revealed diverse experiences across-cases. However, a number of salient themes indicated complexity in caregiving roles and responsibilities. Caregiving encompassed a wide range of physical, emotional, and developmental responsibilities in daily life. There was considerable fluidity in the social nature of occupations; remarkably, few activities were solitary while many were performed as co-occupations (Zemke & Clark, 1996; Pierce, 2011). Furthermore, examination of predominant narrative themes and time use in daily life revealed multifaceted relationships among actions, values, and interests. Ultimately, day-to-day life for AYAs with a SCI and their caregivers was largely interrelated, and vulnerability was significant within dyads. As such, caregiving must be studied from multiple perspectives in order to appreciate the “linked” nature of lives lived (Elder, 1998).

Implications Related to Occupational Science: This work underlines the significance of narrative approaches for understanding phenomena in day-to-day life (Mattingly, 2016). Furthermore, it contributes to ongoing discussions (e.g. Pickens & Pizur-Barnekow, 2009) on the social nature of occupations, and it posits how conceptualization of a dynamic social spectrum of occupational engagement can inform occupational science.

Discussion Questions to Further Occupational Science Concepts and Ideas:

  • Are multiple perspectives required to understand lived experience? If so, how can such perspectives be managed in research designs and methods?
  • What does the analysis of lived experience reveal about the social nature of occupational engagement, particularly in caregiving relationships?
  • How would a conceptualization of the social nature of occupational engagement as a dynamic spectrum influence occupational science, and in particular, studies of experience?

Keywords: caregiving, co-occupations, narrative phenomenology

References

Elder, G. (1998). The life course as developmental theory. Child Development, 69(1), 1-12.

Mattingly, C. (2016). Resilience, disparity, and narrative phenomenology: African American families raising medically vulnerable children. In C. DeMichelis and M. Ferrari (Eds.) Child and Adolescent Resilience in Medical Contexts. (pp.37-49) Springer International Publishing: Switzerland.

Pickens, N. D., & Pizur-Barnekow, K. (2009). Co-occupation: Extending the dialogue. Journal of Occupational Science, 16(3), 151-156.

Pierce, D. (2009). Co-occupation: The challenges of defining concepts original to occupational science. Journal of Occupational Science, 16(3), 203-207.

Zemke, R., & Clark, F. (Eds.). (1996). Occupational science: The evolving discipline. Philadelphia, PA: F. A. Davis.

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Oct 20th, 9:30 AM Oct 20th, 11:30 AM

Drawing on Multiple Perspectives to Understand Roles and Occupations of Caregiving with Spinal Cord Injury

Studio 1

Statement of Purpose: The overarching objective of this research was to examine and unpack experiences in daily life for adolescents and young adults (AYA) with a spinal cord injury (SCI) and their caregivers in order to further understandings of relationships among identity, development, and well-being. Within this research, the purpose of this analysis was to understand roles and occupations of caregiving as they are realized in individual lives.

Description of Methods: AYAs aged 15-22, who acquired a SCI within the previous five years, were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County. With expressed interest in the study, AYAs were invited to nominate a caregiver to also participate. In total, 17 individuals were enrolled (9 AYAs, 8 caregivers), with varying ages, levels and mechanisms of SCI, races, ethnicities, and socioeconomic statuses. Data was collected in two phases with narrative and phenomenological methods. In Phase I, participants were seen in their homes or communities for an individual interview and a series of two group interviews, held separately for AYAs and caregivers. A diverse subset of Phase I participants were identified through iterative data analysis; these individuals (n=6) enrolled in Phase II, which involved additional individual interviews (2-4/AYA, 1-3/caregiver) and activity observations (1/AYA). All interviews were audio recorded and transcribed verbatim for coding in NVivo 11. Data were analyzed categorically, thematically, and narratively within- and across-cases.

Report of Results: Perspectives of individuals receiving and giving care revealed diverse experiences across-cases. However, a number of salient themes indicated complexity in caregiving roles and responsibilities. Caregiving encompassed a wide range of physical, emotional, and developmental responsibilities in daily life. There was considerable fluidity in the social nature of occupations; remarkably, few activities were solitary while many were performed as co-occupations (Zemke & Clark, 1996; Pierce, 2011). Furthermore, examination of predominant narrative themes and time use in daily life revealed multifaceted relationships among actions, values, and interests. Ultimately, day-to-day life for AYAs with a SCI and their caregivers was largely interrelated, and vulnerability was significant within dyads. As such, caregiving must be studied from multiple perspectives in order to appreciate the “linked” nature of lives lived (Elder, 1998).

Implications Related to Occupational Science: This work underlines the significance of narrative approaches for understanding phenomena in day-to-day life (Mattingly, 2016). Furthermore, it contributes to ongoing discussions (e.g. Pickens & Pizur-Barnekow, 2009) on the social nature of occupations, and it posits how conceptualization of a dynamic social spectrum of occupational engagement can inform occupational science.

Discussion Questions to Further Occupational Science Concepts and Ideas:

  • Are multiple perspectives required to understand lived experience? If so, how can such perspectives be managed in research designs and methods?
  • What does the analysis of lived experience reveal about the social nature of occupational engagement, particularly in caregiving relationships?
  • How would a conceptualization of the social nature of occupational engagement as a dynamic spectrum influence occupational science, and in particular, studies of experience?

Keywords: caregiving, co-occupations, narrative phenomenology