Well-Being of Family Caregivers of Persons with Late-Stage Huntington's Disease: Lessons in Stress and Coping

Abstract

The utility of a stress-process model in predicting health and quality-of-life outcomes for family caregivers of persons with Huntington's disease (HD) was tested. HD is an inherited neurodegenerative disease that poses particular challenges to patients and families. Seventeen family caregivers were interviewed and completed scales measuring stressors, appraisals, protective factors, and outcomes. No direct relationship between stress and caregiver well-being was found; the impact of stressors was mediated by appraisals and protective factors. Bivariate correlation analysis revealed significant positive relationships between satisfaction with emotionally supportive communication and life satisfaction. Significant positive correlations were found between positive appraisals of the benefits of the caregiving experience and life satisfaction and health. Mastery was significantly positively correlated with life satisfaction and negatively correlated with depressive symptoms; similar results were found between spirituality and outcome measures. Caregivers' interpretations appeared to have a more significant impact on well-being than did objective characteristics of the experience.

Personal Factors Associated with Reported Benefits of Huntington Disease Family History or Genetic Testing

“…Daily spiritual experiences, but not religious attendance, were found to be related to greater performance of constructive health behaviors, that is, medication adherence and after dietary, alcohol usage, and exercise advice in younger adult cancer survivors (Park et al, 2009). The role of spiritual involvement, beliefs, and coping has been examined with regard to family caregivers of people with HD in the late stages in which spiritual involvement and beliefs were found to be positively correlated with life satisfaction and self-related health, and negatively associated with depressive symptoms in a sample of U.S. caregivers (Roscoe et al, 2009).…”

Impacto de la enfermedad de Huntington en la familia

“…Aquellos que cuidan a pacientes con un comportamiento desfavorable, en graves etapas de una enfermedad, o en una prolongada duración de la misma, experimentan un mayor impacto (fatiga, estrés, morbilidad física y psíquica, incrementando incluso los índices de mortalidad) 24 . Los sentimientos comunes más descritos para la EH incluyen sobrecarga, estrés, cansancio, e incapacidad para afrontar con éxito la enfermedad 25 .…”

“…Puede asumir o elegir él mismo este rol libremente (cuidador egosintónico) o por obligación (egodistónico); asimismo, puede no solicitar ayuda, o solicitarla y no recibirla; o pedir reconocimiento y validación, y sólo recibir (o no) ayuda. Su bienestar depende de la gravedad de los síntomas del enfermo, de los apoyos sociales de que disponga y de la percepción que tiene sobre el balance entre la carga que le supone y los beneficios que obtiene 24 . El cuidador primario necesita apoyo y aprender competencias.…”

“…35, Nº 2, mayo-agosto apoyo en las asociaciones pueden ser un buen recurso ya que les pueden proporcionar apoyo emocional, pero también ideas y sugerencias prácticas de otros cuidadores. Asimismo, necesita mantenerse sano para poder continuar cuidando al enfermo, para lo que necesita de momentos de descanso 24 . Cuando la enfermedad progresa, la familia necesita introducir cuidadores externos.…”

Sobrecarga de cuidadores familiares de idosos em cuidados paliativos

“…Destaca-se a importância do compartilhamento com outros membros da família as responsabilidades com o enfermo e da tarefa de cuidar, fazendo com que, dessa forma, melhore a qualidade de vida dos cuidadores (KANG et al, 2013;ROSCOE et al, 2009;PARK et al, 2012).…”