Participatory research with families of adults who have survived serious brain injury
Lavelle Wijohn, Elisa (2014). 'Participatory research with families of adults who have survived serious brain injury' Paper presented at the annual conference of the HDCA, 2-5 September 2014, Athens, Greece.
Approximately 2000 serious brain injuries are sustained in Aotearoa New Zealand each year and approximately three million worldwide (Feigin et al., 2013). It is well known that serious brain injury causes significant disruption to the lives of people who are injured as well as to the lives of their family members and is also linked to financial deprivation and social isolation (Perlesz, Kinsella, & Crowe, 1999). The individual with the injury can exhibit profound changes in behaviour and personality, but also lack awareness of these changes and their effect on those close to them (Yeates, Henwood, Gracey, & Evans, 2006). For this reason, families need significant support to manage the changed person and their altered relationships.
While models of rehabilitation involving family members have been developed and implemented overseas, they have not been made available in Aotearoa New Zealand due to funding and legislative constraints. Aotearoa New Zealand has a universal no-fault social insurance system for injuries resulting from accident, but the legislation underpinning this system is consistently interpreted to mean that rehabilitation may only be offered to the injured person. The resulting lack of support for family members creates a remediable injustice where, as a result of the brain injury to their loved ones, families are less able to lead their lives in ways they have reason to value. This third-party disability or 'capability deprivation' has been well researched yet calls to policy makers and service providers have fallen on deaf ears.
Māori (indigenous New Zealanders) sustain brain injury at a higher rate than non-Māori (Feigin et al., 2013) and their needs within the health system are less well met than those of non-Māori (Harris et al., 2006). Māori models of wellbeing consistently place family, in its broadest sense, at the centre of well-being, rather than the individual (Durie, 2001). Aotearoa New Zealand was founded on a treaty of partnership between the indigenous population and the settler population. Our health services, however, are largely delivered through a Western paradigm which privileges the needs of the individual.
Much international research has focused on the needs of families, but not on how to effect policy change so that these needs are better met. In order to truly increase the capability of families to live their lives in the ways they value, any drives for change need to be relevant to the context of Aotearoa New Zealand, and in particular to the context of the families in South Auckland who are involved in the project.
Capability approach offers a useful framework for understanding the impact of disability (Mitra, 2006), and critiques measures that purely describe individual functioning and fail to consider the gap between how individuals (or households) are able to live, and how they aspire to live. But this field is still at the early stages of applying theory to field research (Burchardt & Vizard, 2011).
In order to conduct research which is relevant to, and respectful of, family members this project uses Māori-centred community-based participatory research. The family members are co-researchers and determine the shape of the project which we will conduct in order to improve the capabilities of families living with serious brain injury.
Arguments for improved family support can be and have been made from a rehabilitation and an economic angle based on evidence that holistic rehabilitation which includes families is effective in enhancing the lives of the injured person and their family. However, this evidence has so far been ineffective in changing the situation in Aotearoa New Zealand. Using the capability approach with its attention to injustice and human rights, may provide a more powerful lever to achieve change (Siegert & Ward, 2010; Trani, Bakhshi, Bellanca, Biggeri, & Marchetta, 2011). So while the project will largely be determined by family members, in their role as co-researchers, the analysis will be conducted through the lens of the capability approach.
In this paper I will examine the applicability of the capability approach to the situation of families of people with brain injury, and how this supports research which is effective being conducted with family members. Particular attention will be given to international human rights covenants of relevance to people with disabilities and their families and the possibilities for these devices to be used as leverage for change for the families of people with serious brain injury.
Given that knowledge about the situation of families has not resulted in significant change for families, this project works to increase the capabilities of families of people with serious brain injury.
Burchardt, T., & Vizard, P. (2011). Operationalizing' the Capability Approach as a Basis for Equality and Human Rights Monitoring in Twenty‐first‐century Britain. Journal of Human Development and Capabilities, 12(1), 91-119. doi:10.1080/19452829.2011.541790
Durie, M. (2001). Mauri Ora: The dynamics of Maori health. Oxford University Press
Feigin, V. L., Theadom, A., Barker-Collo, S., Starkey, N. J., McPherson, K., Kahan, M., . . . Ameratunga, S. (2013). Incidence of traumatic brain injury in New Zealand: a population-based study. The Lancet Neurology, 12(1), 53-64. doi:http://dx.doi.org/10.1016/S1474-4422(12)70262-4
Harris, R., Tobias, M., Jeffreys, M., Waldegrave, K., Karlsen, S., & Nazroo, J. (2006). Effects of self-reported racial discrimination and deprivation on Maori health and inequalities in New Zealand: Cross-sectional study. Lancet, 367(9527), 2005-2009.
Mitra, S. (2006). The Capability Approach and Disability [Article]. Journal of Disability Policy Studies, 16(4), 236-247.
Perlesz, A., Kinsella, G., & Crowe, S. (1999). Impact of Traumatic Brain Injury on the Family: A Critical Review. Rehabilitation Psychology, 44(1), 6-35. doi:10.1037/0090-55126.96.36.199
Siegert, R. J., & Ward, T. (2010). Dignity, rights and capabilities in clinical rehabilitation. Disability & Rehabilitation, 32(25), 2138-2146.
Trani, J.-F., Bakhshi, P., Bellanca, N., Biggeri, M., & Marchetta, F. (2011). Disabilities through the Capability Approach lens: Implications for public policies. ALTER - European Journal of Disability Research / Revue Européenne de Recherche sur le Handicap, 5(3), 143-157. doi:10.1016/j.alter.2011.04.001
Yeates, G., Henwood, K., Gracey, F., & Evans, J. (2006). Awareness of disability after acquired brain injury: Subjectivity within the psychosocial context. Neuropsychoanalysis, 8, 175-189.