ABSTRACT
Caregiving at Life's End (CGLE) is a program for family caregivers caring for someone during the last years of life that focuses on the emotional, spiritual, and practical aspects of life and relationship completion and closure. This study evaluated the effectiveness of CGLE in improving three major outcomes: comfort with caregiving, closure, and caregiver gain. Family caregivers (n=2,025) participated in programs facilitated by health and human service professionals (n=142) who completed a CGLE train-the-trainer workshop conducted by The Hospice Institute of the Florida Suncoast. The caregivers completed training rosters and pre- and/or post-surveys. Group differences are reported in baseline characteristics and change in three outcomes for caregivers who completed 1) both pre- and post-survey, 2) pre-survey only, and 3) post-survey only. For those who completed both surveys (n=926), paired t-tests and multiple linear regression tested the impact of program length on caregiver outcomes. Caregivers participated in, on average, four sessions and 7.7 hours of training. The majority of caregivers were Caucasian (88%), female (81%), and on average, 60 years old. Significant improvement was found in all three outcomes (P<0.001). The program length made a difference for improvement in comfort with caregiving and closure but not in caregiver gain. Caregivers who are caring for someone during the last years of life benefit from a program that focuses on the life-changing or transformative aspects of caregiving in the last years of life, as well as practical aspects of caregiving. The ability to support caregivers in this relatively low impact intervention can be used in hospice and nonhospice settings.
Subject(s)
Caregivers/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Data Collection , Death , Female , Health Education , Hospice Care , Humans , Male , Middle Aged , Stress, Psychological/psychologyABSTRACT
Rising awareness of the physical and emotional toll of caregiving for a loved one highlights the need for health and human service providers to be able to effectively address the needs of caregivers. Through the Caregiving Near Life's End national caregiver research and education project, caregivers shared their experiences, needs, and hopes as the basis for developing tools to help other caregivers. Their wisdom about the challenges and the meaningful opportunities that the last years of life bring can help each of us develop skills to serve families who are living with illness, change, and loss in a better way.
Subject(s)
Caregivers , Hospice Care , Social Support , Adaptation, Psychological , Caregivers/psychology , Florida , Humans , Professional-Family RelationsABSTRACT
The researchers in this study developed and validated a questionnaire to measure the needs of end-of-life (EOL) caregivers. The model is used to facilitate meaningful and supportive experiences for both the patient and caregiver The questionnaire was developed using existing scales of meaning, self-acceptance, burden, and gain as well as new scales of caregiver comfort, importance of caregiving tasks, and caregiver closure. The sample included 34 current and 17 bereaved caregivers affiliated with The Hospice Institute of the Florida Suncoast. The scales performed well in terms of concurrent validity, internal consistency, and reliability.
Subject(s)
Caregivers , Hospice Care , Palliative Care , Quality of Life , Surveys and Questionnaires/standards , Aged , Caregivers/psychology , Female , Florida , Hospice Care/psychology , Humans , Life Change Events , Male , Middle Aged , Outcome Assessment, Health Care/methods , Palliative Care/psychology , Quality of Life/psychology , Reproducibility of Results , Stress, Psychological/etiologyABSTRACT
We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.
Subject(s)
Caregivers/psychology , Caregivers/statistics & numerical data , Hospice Care/psychology , Hospice Care/statistics & numerical data , Life Change Events , Palliative Care/statistics & numerical data , Stress, Psychological/epidemiology , Aged , Attitude to Death , Data Collection , Female , Florida/epidemiology , Humans , Male , Outcome Assessment, Health Care/methods , Palliative Care/psychology , Personal SatisfactionSubject(s)
Academic Medical Centers/organization & administration , Community-Institutional Relations , Hospice Care/organization & administration , Palliative Care/organization & administration , Research/organization & administration , Attitude to Death , Caregivers , Continuity of Patient Care/organization & administration , Florida , Humans , Models, Organizational , Organizational Case Studies , Organizational Objectives , Patient Advocacy , Patient Care Team/organization & administration , Patient Education as Topic/organization & administration , Professional-Family Relations , Quality of LifeSubject(s)
Adaptation, Psychological , Grief , Hospice Care/methods , Hospice Care/psychology , Nurse's Role , Adult , Attitude to Death , Counseling , Family/psychology , Female , Humans , Male , Middle Aged , Models, Nursing , Models, Psychological , Nursing Assessment , Social SupportABSTRACT
Teaching loss, grief, and bereavement to nursing students should be an interactive process to stimulate critical thinking and address the affective domain of learning. Lecture as a teaching methodology may be the easiest to prepare and deliver; however, used alone, it is ineffective in identifying perceptions, fears, and issues related to dying and death. Personal and professional experiences of loss, grief, and bereavement are central to student's learning of effective and compassionate care of the dying patient and their family. Strategies that explore such experiences allow students to move forward and focus on the cognitive retention of content related to loss, grief, and bereavement, as well as the ability to learn related psychomotor skills. The authors discuss pedagogical methods for teaching student nurses about loss, grief, and bereavement utilizing the End of Life Nursing Education Consortium (ELNEC) curriculum training materials.
