Individualised Informal Caregiver Training for Palliative Care at Home

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

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.

Study Overview

• Status: Terminated
• Conditions: Palliative Care
• Intervention / Treatment: Behavioral: Caregiver training

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.

• Study Type: Interventional
• Enrollment (Actual): 14
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United Kingdom
  • Oxfordshire
    • Oxford, Oxfordshire, United Kingdom, OX37LE
      • Sir Michael Sobell House Hospice

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

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.

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Caregiver Training; Three home visits by a specialist occupational therapist, each lasting 1-2 hours. Assessment and training to confidently achieve up to three goals relating to practical activities of daily living identified by patient and caregiver. On-going usual care from multi-professional team at hospice.	Behavioral: Caregiver training; Occupational therapy training focuses on improving confidence to manage practical aspects of care in areas of daily life important to patient and caregiver, in which caregiver reports or anticipates low levels of confidence.
No Intervention: Usual Care; On-going usual care from multi-professional team at hospice.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Recruitment, retention, attrition, missing data rates	To evaluate feasibility of study	6 weeks post recruitment

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Preparedness for caregiving scale	Validated for carers of patients with dementia but is used in palliative care settings. Eight items evaluate carer preparedness to care across multiple domains of caregiving. Items rated on a 5 point scale. Low scores indicate less preparedness.	Baseline and 4-6 weeks
Caregiver Burden Scale at End of Life	Validated for use in carers looking after patients with chronic illness. 14 items measured on a 5 point scale evaluate perceived difficulty in completing tasks. High scores indicate greater burden.	Baseline and 4-6 weeks
Modified Caregiver Strain Index	13 item tool developed for carers looking after older adults living in community based settings. Items measure strain related to care provision in financial, physical, psychological, social or personal domains scored on a three point scale. High scores indicate higher levels of strain.	Baseline and 4-6 weeks
Carer Confidence Scale	Non validated. Developed by research team as no existing tools measure carer confidence in palliative care settings. A single question asks carers to rate their confidence to care on a 5 point scale. Higher scores indicate greater confidence.	Baseline and 4-6 weeks

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Health care utilisation	A record of unplanned or emergency care accessed by patient over course of study period will be completed by carers.	4-6 weeks
Acceptability	Carer and patient questionnaires, carer qualitative interviews, occupational therapist report	4-6 weeks
Age	Patient and carer demographics will be collected.	Baseline
Gender		Baseline
Diagnosis	Diagnosis of patient	Baseline
Health status	Self reported health status of carer	Baseline
Co-morbidities	Other medical conditions	Baseline
Social Circumstances	Lives alone, lives with, type of housing,	Baseline

Collaborators and Investigators

• Sponsor: University of Oxford
• Collaborators: Oxford Brookes University; University of Southampton; Oxford University Hospitals NHS Trust
• Investigators: Study Chair: Bee Wee, MB BCh PhD, Oxford University Hospitals NHS Trust and University of Oxford

Study record dates

Study Major Dates

• Study Start: August 1, 2015
• Primary Completion (Actual): April 1, 2016
• Study Completion (Actual): April 1, 2016

Study Registration Dates

• First Submitted: September 29, 2015
• First Submitted That Met QC Criteria: October 28, 2015
• First Posted (Estimate): October 29, 2015

Study Record Updates

• Last Update Posted (Estimate): June 3, 2016
• Last Update Submitted That Met QC Criteria: June 1, 2016
• Last Verified: June 1, 2016

More Information

Terms related to this study

• Keywords: Occupational Therapy; Activities of Daily Living; Family Caregivers
• Other Study ID Numbers: REC number 14/SC/1104