School of Psychology & Speech Pathology, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, Western Australia 6845 Australia.
School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, Perth, Australia.
BMC Palliat Care. 2015 Mar 15;14:6. doi: 10.1186/s12904-015-0009-z. eCollection 2015.
The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers' anticipation and preparation of the death of the person for whom they care.
METHODS/DESIGN: We will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points - approximately 4-8 weeks prior to bereavement, and 3-4, 6-7, and 9-10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers' data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers' general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement.
This is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings.
本研究旨在确定照料对丧亲结果的影响。本研究将解决研究文献中的两个重要空白：（1）死亡前痛苦与死亡后结果之间的关系；（2）家庭照顾者对他们所照顾的人的死亡的预期和准备。
方法/设计：我们将对接受姑息治疗的成年患者的成年家庭照顾者进行一项纵向、前瞻性研究。所有参与者将在四个时间点完成一份问卷，大约在丧亲前 4-8 周，以及丧亲后 3-4、6-7 和 9-10 个月。问卷包括多维照顾体验（压力、痛苦、积极评价和家庭幸福感）、照顾者的长期悲伤、多维悲伤反应（绝望、恐慌行为、责备和愤怒、分离、混乱和个人成长）、长期悲伤、生活质量、一般健康（心理和生理）和人口统计学的测量。将这些照顾者的数据与年龄、性别和邮政编码匹配的对照组进行比较，使照顾者的一般健康和生活质量能够与正常组进行比较。还将邀请照顾者参加关于为即将到来的丧亲做准备的半结构化访谈。
这是第一项解决当前文献中方法学限制的研究，可能会对我们理解丧亲对照顾的影响以及姑息治疗和临终关怀环境中提供的丧亲护理做出重大贡献。
