Together in Line, the Power of Informal Care in Group

NCT03475576 | Completed

• 1 other identifier: Together in line - Cera
• Study Type: interventional
• Target: 64
• Locations: 1 country
• Sites: 1

Brief Summary

An aging population means an increase of the oldest part of the population, resulting from a change in demographic behavior and an increasing lifespan. The social networks are changing and the health care costs are rising. We know informal care of older civilians becomes more and more complex. A formal framework with a good communication to support informal caregivers is therefore essential in order to provide good care for a dependent older civilian. Informal care is the support and assistance of a dependent person, outside the context of professional care or organized volunteering, but by one or more members from the immediate vicinity of the dependent1. The 'informal care group' is defined as follows: 'a group of two or more persons who together provide informal care to a dependent person, beyond the scope of professional care or organized volunteering, but as members of the immediate vicinity of the dependent'. In this group, the different members contribute to the care process in an equitable but non-proportional manner. The dynamics in an informal care group are obviously different from those in a family where one central informal caregiver is responsible for the care of the ill relative: behind each individual of the informal care group, there is also a partner and/or children who influence the care motivations and accountability. Sharing informal caregiving has important advantages. Firstly, individuals of the informal care group needs less time to fulfill specific caregiver tasks and have more time to cope with external stressors. Secondly, caregivers in group receive support from each other, which strengthens their self-efficacy. However, the involvement of more caregivers may also be a source of conflict. This project aims to meet the needs of informal care groups of older civilians. An adjusted support for older civilians (≥70 years) and their informal care group will be achieved. We will focus on their needs, aimed to decrease the caregiver burden and increase the well-being of both older civilian and caregivers. This goal will be achieved by a better care planning and attempts to improve communication between older civilian, informal and professional caregivers, which we found in previous research as difficult and an important obstacle in concretize individual tailored support of the older civilian and caregivers.

Conditions

Quality of Life

Keywords

elderly; caregiving; needs; support

Outcome Measures

Primary Outcomes (2)

• caregiver burden

  The Zarit burden interview (ZBI), a self-report scale, is believed to be the most commonly used measure of caregiver burden. Initially the ZBI was developed to measure strain associated with the care of community-dwelling persons with Alzheimer disease, but Bachner et al. showed that the ZBI was reliable across populations of caregivers and patients. The ZBI was used to assess the subjective burden experienced by an informal caregiver. For this study an adjusted 12 item ZBI, derived from the QUALIDEM Project, was chosen. The answers are never, rarely, sometimes, quite frequently and nearly always (scored from 0 to 4). The sum was taken over all the questions (range 0-48) and the caregiver was assigned to a category of severe or high burden if the score was 17 or higher. The standard ZBI-12 of Bedard et al. has shown a high correlation with the full ZBI ranging from 0.92 to 0.97 (p=0.001).

  6 months

• depressive complaints

  Geriatric Depression Scale: The most commonly used scale for late-life depression is the geriatric depression scale (GDS). The GDS is an instrument to measure depressive complaints specifically in an older population. However, Covinsky et al. has also used it to screen for caregiver depression. The short version will be used, which consists of 15 yes or no questions. The scores are summed range 0-15 and the participant is categorised as having depressive complaints when he or she scores five or higher. The 15-item GDS has been shown to have adequate sensitivity and specificity and to be significantly more accurate than the 30-item GDS.

  6 months

Study Arms (1)

all participants

OTHER

The intervention, offered to the older civilians and their informal care groups will consist of a updated version of the 'Keuzewijzer'. This is a self-management tool which stimulates the communication within the informal care groups to make behaved choices concerning the care for the older civilian, taking into account the standards, values, concerns and needs of every informal caregiver and older civilian.

Other: Keuzewijzer

Interventions

Keuzewijzer OTHER

The intervention, offered to the older civilians and their informal care groups will consist of a updated version of the 'Keuzewijzer'. This is a self-management tool which stimulates the communication within the informal care groups to make behaved choices concerning the care for the older civilian, taking into account the standards, values, concerns and needs of every informal caregiver and older civilian. The most important value of this intervention is the approachability and the structured, but adjusted manner of support, focused on the individual context of care with their specific needs. The 'Keuzewijzer' is an online tool whereby, in conversation with the informal care group and older civilian, the following aspects will be discussed in the context of the care for the older civilian: 1) analyzing the problem, 2) detection of possibilities or alternatives, 3) clarifying of motives and feelings and 4) weighting between values.

all participants

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• Both the older civilians and the informal caregiver give their written consent after being informed.
• Only civilians aged 70 years or older and their informal caregivers will be included.
• Only civilians and their informal caregivers who have a thorough command of Dutch will be included.

You may not qualify if:

• Older civilians with a formal diagnosis of dementia
• too ill to participate
• in a palliative phase

Sponsors & Collaborators

• KU Leuven: lead

Study Sites (1)

ACHG

Leuven, 3000, Belgium

Location

Study Officials

• Birgitte Schoenmakers, PhD

  ACHG

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor Dr.

Model Details: before and after study

Study Record Dates

• First Submitted: March 9, 2018
• First Posted: March 23, 2018
• Study Start: March 28, 2018
• Primary Completion: September 30, 2018
• Study Completion: December 31, 2019
• Last Updated: January 29, 2020

Record last verified: 2020-01

Locations

BE (1)