Abstract
ObjectiveDepression is highly comorbid with traumatic brain injury (TBI) with often complex and interacting symptomology that contributes to the experience of disability. Comorbid depression results in poorer TBI rehabilitation and downstream participation outcomes yet perspectives of this group regarding person-centered care is unknown.PurposeThis study aimed to explicate the perspectives of persons with TBI and depression on their values, preferences, and desired outcomes for optimal rehabilitation.MethodsA qualitative descriptive approach was taken. Thirteen adults [mean age: 40.5 (standard deviation 9.8)] diagnosed with TBI and with self-reported low mood were recruited through convenience sampling. Participants were predominantly female (n = 12) with concussion/mild TBI and at least 6 months post-injury. One-on-one, semi-structured interviews were conducted by phone with Canadian participants (March-May 2020). Interviews were transcribed; data were analyzed thematically by two researchers and the thematic map refined by the research team.ResultsThree themes were identified on values, preferences, and desired outcomes in person-centered care. Participants valued “validation” from healthcare providers and the health system to feel seen and believed about their conditions and concerns. They preferred for healthcare providers to “share the burden of managing care” through improved interactions and better access to concussion care. Participants expressed that “meaningful outcomes” were to be symptom free, to resume valued life activities, and to be able to adapt/be resilient. The latter indicated hope for “continued vitality” for life participation despite past and ongoing challenges.ConclusionsMany adults with TBI and self-identified low mood expressed rehabilitation experiences that were invalidating. Their identified values, preferences, and desired outcomes provide directions for better person-centered care by healthcare providers and health systems to support participation.
Highlights
Depression is a comorbidity which is highly prevalent in the traumatic brain injury (TBI) population [1], yet the rehabilitation experiences and participation outcomes of individuals with TBI and depression have not been a focus of research to date
There are compelling reasons to treat depression during TBI rehabilitation: having depressive symptoms likely results in slower recovery [18], and comorbid mental health is associated with lower quality of care [19] and increased cost and complexity [20]
We focused on patient perspectives because patients have distinct values and preferences regarding their interactions with Healthcare providers (HCPs) [27], and because their rehabilitation experiences are influenced by HCP attitudes and by the quality of their interactions [28, 29]
Summary
Depression is a comorbidity which is highly prevalent in the traumatic brain injury (TBI) population [1], yet the rehabilitation experiences and participation outcomes of individuals with TBI and depression have not been a focus of research to date. Representation from this group is lacking in TBI clinical practice guidelines [2] which are evidencebased tools intended to improve rehabilitation and patient outcomes [3, 4], but which poorly incorporate patient values and preferences within treatment recommendations [5,6,7,8]. “a “good” outcome must be defined in terms that are meaningful and valuable to the individual patient” [25] and be broader than merely clinical/medical endpoints [26]
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