The Family Caregiving Dilemma

Stork, Ryan; Martone, Marilyn; Osterman, Paul; Savage, Teresa A.; Mukherjee, Debjani

doi:10.1016/j.pmrj.2017.12.001

Cited by 2 publications

(2 citation statements)

References 4 publications

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“…Caregivers of spouses present more psychological morbidity when compared to other direct relatives, such as parents, children, and siblings (Valer et al, ). Regarding, the situation faced by several caregivers who did not chose to be caregivers, Stork, Martone, Osterman, Savage, and Mukherjee () emphasized the need for society to appreciate the value of caring and to provide resources to allow caregivers, if they are professionally active, to reconcile their work with the caregiving tasks.…”

Section: Discussionmentioning

confidence: 99%

Burden and quality of life in caregivers of patients with amputated diabetic foot

et al. 2020

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Informal caregivers of chronically ill patients often report burden and poor quality of life. This study aimed to evaluate the impact of caring on caregivers of amputated patients with type 2 diabetes and diabetic foot. A cross-sectional study included a convenience sample of 110 caregivers who answered: the Burden Assessment Scale, the Depression Anxiety Stress Scales, the Social Support Satisfaction Scale, the Family Assessment Device, and the Short Form Health Survey. Multiple linear hierarchical regressions were performed to identify the variables that contributed to the burden and the physical and mental quality of life. Differences in burden as well as physical and mental quality of life were found, according to several caregivers' sociodemographic characteristics. Lower social support, more distress, and caregiver's perception of the impact of caring on the family dynamics contributed to burden. Lower distress and not having a chronic illness besides diabetes explained the physical quality of life whereas exercise and lower distress explained mental quality of life. To promote quality of life in caregivers and reduce the burden associated with caregiving, interventions should focus on social support, distress, and the practice of exercise.

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Section: Discussionmentioning

confidence: 99%

Burden and quality of life in caregivers of patients with amputated diabetic foot

et al. 2020

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“…Surrogates may become caregivers with unpaid caregiving, a burden more often and disproportionately assumed by women. As Stork et al 5 write, "Many families are willing to bear a portion of the responsibility of caring for their ill family member but realize that total caregiving might actually destroy the family and those who do the caregiving." These realities need to be appreciated and, when possible, mitigated with respite services and shared caregiving options.…”

Section: Who Decides and How Decisions Are Madementioning

confidence: 99%

Looking Ahead: Traumatic Brain Injury, Ethics, and Discharge Planning

Mukherjee

2021

Journal of Head Trauma Rehabilitation

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D ISCHARGE PLANNING is a process fraught with ethical issues including safety concerns, informed refusals, and the lack of access to healthcare and social services for continuing care. Discharge dilemmas were common in my 16 years working in disability and rehabilitation ethics at the Rehabilitation Institute of Chicago, now the Shirley Ryan AbilityLab, a freestanding rehabilitation hospital with comprehensive brain injury rehabilitation services. We struggled with discharge dilemmas without clear-cut solutions, often amplified by the personal, familial, and social variables associated with traumatic brain injury (TBI). What if someone has met the goals of rehabilitation and has incrementally regained cognitive function but is unable to participate in discharge planning because they are not yet able to demonstrate capacity? What about a refusal to go to a skilled nursing facility (SNF) when a surrogate has consented but the person with TBI refuses? What about the person who could be discharged home if they could afford caregivers?The challenges are layered. At the individual level, the injury itself can impact problem-solving and planning. People with TBI may have waxing and waning capacities and the ability to participate in decision-making. Their impairments may be related to judgment and future safety concerns. Families and surrogates often make discharge decisions that have far-reaching consequences such as long-term institutionalization. They are confronted with limited choices. Some options are limited based on individual characteristics such as the sequelae of the injury. Others are structural and relate to health insurance coverage, geography, and broader questions of access to appropriate services.In this piece, I will consider 3 key ethical concerns in discharge planning from inpatient brain injury rehabilitation: who decides and how decisions are made; the

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The Family Caregiving Dilemma

Cited by 2 publications

References 4 publications

Burden and quality of life in caregivers of patients with amputated diabetic foot

Burden and quality of life in caregivers of patients with amputated diabetic foot

Looking Ahead: Traumatic Brain Injury, Ethics, and Discharge Planning

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