Clinical trial NCT02591693: Individualised Informal Caregiver Training for Palliative Care at Home
Official title: Feasibility Study: Improving Caregiver Confidence in Their Ability to Look After Patients With Palliative Care Needs, Using Focused One to One Training in the Home
Study type: INTERVENTIONAL
Overall status: TERMINATED
Phase: NA
Conditions: Palliative Care
Keywords: Family Caregivers
Occupational Therapy
Activities of Daily Living
Lead sponsor: University of Oxford
Sponsor class: OTHER
Collaborators: name: Oxford University Hospitals NHS Trust
name: Oxford Brookes University
name: University of Southampton
First posted: 2015-10-29
Enrollment: 14
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: SUPPORTIVE_CARE

Brief summary: The purpose of this study is to determine whether a training intervention to improve caregiver confidence for family caregivers of patients with palliative care needs at home, is acceptable to patients and their caregivers.

Detailed description: Many patients with terminal illnesses rely on friends and family for much of their practical day to day care. These friends and family members often lack the skills and confidence to carry out these tasks and studies have shown that many would want more support. Studies have also shown that many patients feel they are a burden.

This study involves carers receiving training to learn the skills they need to care for their loved one. Adult patients with terminal illnesses, currently receiving care from a specified hospice in the South East of England, who have a friend or family member caring for them at home are eligible to be referred for this study.

The training of the carer will be carried out over three sessions by an Occupational Therapist in the patient's own home.The training will focus on goals that the patient and carer have chosen together.

The carer will be asked to complete before and after questionnaires and some will be asked to take part in interviews to see how they felt about the study.

The potential benefits of this study are to increase carer confidence in caring for their loved one.

The overall aim of this study is to test out the research method to see if patients and carers find this training and the outcome measures acceptable. If they do then the investigators plan to learn from this study to design a larger randomised control trial which would be the best way of knowing for sure whether and in what ways this training is helpful.

Eligibility criteria: Inclusion Criteria:

* Patient currently at home, reliant on family/friends (lay carers) some or all of the time to help with practical or personal care.
* The carer is aged 18 years or over.
* The carer and the patient have the capacity to consent to being involved in the study.

Exclusion Criteria:

* There is a current plan in place for all care to be provided by paid carers full time.
* The patient currently receiving more than one contact with Hospice Specialist Occupational Therapy or is likely to develop needs requiring more than one contact Hospice Occupational Therapy over the four week study intervention period.
* Patients and carers who are not able to speak or understand adequate English for consent to be obtained, to be able to undertake carer training and to complete the study outcome measures.

Primary outcomes:
measure: Recruitment, retention, attrition, missing data rates
timeFrame: 6 weeks post recruitment
Secondary outcomes:
measure: Preparedness for caregiving scale
timeFrame: Baseline and 4-6 weeks
measure: Caregiver Burden Scale at End of Life
timeFrame: Baseline and 4-6 weeks
measure: Modified Caregiver Strain Index
timeFrame: Baseline and 4-6 weeks
measure: Carer Confidence Scale
timeFrame: Baseline and 4-6 weeks
Other outcomes:
measure: Health care utilisation
timeFrame: 4-6 weeks
measure: Acceptability
timeFrame: 4-6 weeks
measure: Age
timeFrame: Baseline
measure: Gender
timeFrame: Baseline
measure: Diagnosis
timeFrame: Baseline
measure: Health status
timeFrame: Baseline
measure: Co-morbidities
timeFrame: Baseline
measure: Social Circumstances
timeFrame: Baseline
Locations:
city: Oxford
country: United Kingdom
facility: Sir Michael Sobell House Hospice
state: Oxfordshire
Study officials:
affiliation: Oxford University Hospitals NHS Trust and University of Oxford
name: Bee Wee, MB BCh PhD
role: STUDY_CHAIR
References: