Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life

Abstract

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents, n= 21 partners/spouses (77% female, Mean age = 57.96 year, range = 34-78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent subthemes indicated that caregivers are (a) overburdened with responsibilities, (b) lack personal time and time for self-care, (c) feel that their life is interrupted or lost, (d) grieve the loss of the person with TBI, and (e) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of subthemes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.

Caring for our wounded warriors: A qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury

“…First, the majority of caregivers were spouses. We have previously discovered differences between parent and spouse caregivers of civilians with TBI 41 and differences by relationship type should be explored in caregivers of military TBI. We also did not examine the impact that length of time providing care had on the caregiver role.…”

Identifying and Understanding the Health Information Experiences and Preferences of Caregivers of Individuals With Either Traumatic Brain Injury, Spinal Cord Injury, or Burn Injury: A Qualitative Investigation

“…The majority of caregivers lack the time or energy to care for themselves and often experience declining health after assuming that responsibility [6,16]. Among parents caring for children with a burn injury, perceived lack of support was significantly associated with symptoms of general anxiety and depression [15].…”

Caregivers’ Perspectives on the Slight Recovery of Oral Intake of Home‐Dwelling Patients Living With a Percutaneous Endoscopic Gastrostomy Tube: A Qualitative Study Using Focus Group Interviews

“…The effects of slight recovery of oral intake were organized based on the following themes: reconstructing and/or strengthening a sense of family belonging, combining oral intake and other rehabilitation, reducing the burden of providing care, and relieving social isolation. These themes, especially “relieving social isolation,” may reflect that “food provides more than nutrition.” Several studies indicated that caregivers of community‐dwelling patients with stroke or TBI feel emotionally overwhelmed and that their family dynamics shifted dramatically . Our findings highlighted that even a slight recovery of oral intake in patients living with a PEG tube for EN led to positive impacts on emotionally overwhelmed caregivers.…”

“…29 Several studies indicated that caregivers of community-dwelling patients with stroke or TBI feel emotionally overwhelmed and that their family dynamics shifted dramatically. [30][31][32] Our findings highlighted that even a slight recovery of oral intake in patients living with a PEG tube for EN led to positive impacts on emotionally overwhelmed caregivers. Moreover, we would like to propose that the evaluation criteria for swallowing rehabilitation of patients requiring HEN need to include the various impacts on caregivers because eating behaviors impact the family dynamics and caregivers' own life.…”