None listed
Conditions
Brief summary
BACKGROUND A significant proportion of caregivers of palliative care patients experience severe psychological distress and complicated grief. Little is known on the psychological impact of a patient’s death and dying among significant others who may not be recognised as the primary caregiver but nonetheless share a close relationship. However, research has shown that caregivers and significant others indicate a similar need for support. In this project, we will evaluate an Acceptance and Commitment Therapy based intervention for caregivers and significant others. Acceptance and Commitment Therapy (ACT) is a mindfulness-based behavioural therapy that encourages individuals to accept unwanted private experiences (e.g. thoughts, feelings) that are out of their personal control and engage in values-guided action that gives meaning to their lives. The intervention is a guided self-help program consisting of an ACT booklet and telephone support by a counsellor. AIMS To measure the efficacy of the ACT self-help program at postintervention in improving: 1. acceptance and valued-living 2. depression and grief METHODS This project is a two-arm randomised controlled trial: participants are randomly allocated to the intervention or control group. The control group will receive treatment as usual from the palliative care service in the form of psychosocial support from social workers. The intervention group will receive the ACT booklet and telephone support. The booklet will guide caregivers and significant others to manage difficult thoughts and feelings and engage in valued activities (i.e. things they care about that give them meaning and fulfilment). The telephone support comprises a phone call after 1 week of receiving the booklet to address questions about the self-help booklet. Participants complete three questionnaires: preintervention, 1-month postintervention, and 6 months postbereavement. The questionnaires ask about feelings; values in life; attitudes towards life, death and dying; and communication with the patient.
Interventions
The intervention group will receive a skills-based Acceptance and Commitment Therapy (ACT) self-help booklet and telephone support. The booklet is designed to help caregivers and significant others cope better with their situation through psycho-education and experiential exercises, and telephone support. The booklet will teach skills that enable participants to have a different relationship with their difficult thoughts and feelings so that they have less of a negative impact on the way they want to live their life and who they want to be. It will also guide participants to be clearer on their values and make a commitment to act in accordance with their values despite the difficulty they are experiencing. The booklet was developed based on a literature review and consultation with experts in psychology and palliative care. It has been reviewed by a consumer group of cancer caregivers. A researcher will call participants after 1 week of receiving the booklet to offer support for understanding the information and exercises. The researcher will ask participants if they did all, some or none of the reading and exercises, and if they have a question about the information or exercises. The researcher will respond with positive and encouraging feedback, and offer advice and instruction. If the caregiver or significant other becomes bereaved within 1 week of receiving the booklet, the researcher will wait at least 2 weeks before calling. This time period was recommended by site staff and is reflective of their current practice with bereavement follow-up support.
Sponsors
Study design
Eligibility
Inclusion criteria
Participants need to be aged 18 years or over and have sufficient comprehension of English to be able to understand and complete the study documents. Caregivers are identified by the patient as the primary informal caregiver; that is, the person who spends most time with the patient, who provides most of their informal day-to-day care, assistance and support. Significant others are identified by the patient or caregiver as a significant other who provides informal care, assistance or support and is perceived as being substantially affected by the patient’s situation.
Exclusion criteria
Individuals with active psychosis, intellectual disability, moderate to severe cognitive impairment, or insufficient comprehension of English that would impair their ability to give informed consent and provide valid responses.