Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity

Abstract

Implications for Rehabilitation • Rehabilitation services need to focus on broad family contexts rather than focus on the injured individual in isolation. • Understanding the nature of the work being undertaken by informal carers, and their capacity to carry out that work is important when considering supports. • Rehabilitation professionals need to consider and respond to the impact that changing circumstances have on the capacity of informal care networks to manage care workload.

Regaining equilibrium: Understanding the process of sibling adjustment to pediatric acquired brain injury.

“…The findings of the current study supported many constructs and theories of family response to ABI with regard to broader models of family adjustment and systems (e.g., McIntyre & Kendall, 2013). In particular, the theory presented in this study highlighted how the evolving nature of an ABI ensured that the many environmental and emotional losses siblings experienced were ongoing and that equilibrium was constantly threatened.…”

Entering into a system of care: A qualitative study of carers of older community‐dwelling Australians

“…However, possessing skills and resources to navigate systems, especially knowledge about systems or networks of social and professional support, were key to coping with the systemic work. This finding is consistent with existing evidence that social or relational networks can help with the workload of negotiating systems for improved access to care, through transmission of advice and information about services (Funk et al., 2019; Hainstock et al., 2017; Shim, 2010) and reduce workload (McIntyre et al., 2018; Sav et al., 2016). Participants with prior system knowledge or career‐related knowledge were able to use this information to their advantage.…”

Comprehensive community reintegration programming for persons with acquired brain injury.

“…Everhart et al (2020) refer to caregiver capacity as “the extent to which caregivers possess the knowledge and skills required to care for the injured” (p. 33). McIntyre et al (2020) found that families’ capacity to assume the caretaker role was influenced by variables intrinsic to both the caregiver and survivor, as well as by level of available support and family dynamics. The complexity of the intrapersonal and interpersonal dynamics of assuming the caregiver role, including preevent family dynamics (Everhart et al, 2020), reciprocally influences caregiver and survivor reports of well-being and a breakdown of this framework can negatively influence the adaptation process substantially (Rotondi et al, 2007).…”

“…Given the relatively younger age associated with ABI (Colantonio et al, 2015; McIntyre et al, 2020), caregivers often find themselves caring for their loved ones into their elder years (Frosch et al, 1997; Minnes et al, 2010) and not only contend with the ongoing challenges of long-term caregiving but also ultimately must contend with their own health concerns and associated care (Martin & Langbein, 2017). As their quality of life diminishes over time, the ability to manage and to monitor their loved ones’ own evolving needs can become compromised, and although periodic residential respite care may offer some benefit, it is not sufficient for caregivers to attain a continuously healthy level of well-being (Kolakowsky-Hayner et al, 2001; Minnes et al, 2010; Smeets et al, 2012).…”