Evidence map›Paper›PMID 36536337›Full record

Trial reportBMC health services research2022

Burden of informal caregivers of people without natural speech: a mixed-methods intervention study.

Anna Zinkevich, Sarah Anna Katharina Uthoff, Markus Antonius Wirtz, Jens Boenisch, Stefanie Kalén Sachse, Tobias Bernasconi, Michael Feldhaus, Lena Ansmann

Abstract readClinical Trial
In one paragraph

Trial report in BMC health services research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Anna ZinkevichDepartment of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany. anna.zinkevich@uni-oldenburg.de.
Sarah Anna Katharina UthoffDepartment of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.
Markus Antonius WirtzDepartment of Research Methods, Freiburg University of Education, Freiburg, Germany.
Jens BoenischDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, Germany.
Stefanie Kalén SachseDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, Germany.
Tobias BernasconiDepartment of Special Education and Rehabilitation, University of Cologne, Cologne, Germany.
Michael FeldhausDepartment of Social Sciences, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.
Lena AnsmannDepartment of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPeople with disabilities and without natural speech often rely on care provided by informal caregivers. The caregiving situation of these informal caregivers has been poorly researched. The objectives of the study are 1) to identify stressors, resources, and coping strategies among informal caregivers of people without natural speech and 2) to examine whether a complex intervention in augmentative and alternative communication (AAC) that is not primarily tailored to the needs of informal caregivers can reduce care-related burden.

methodsThe main components of the AAC intervention were (1) initial counselling session, (2) 4 AAC training sessions, (3) 20 AAC therapy sessions and (4) accompanying case management. The control group received only the initial counselling session. Within a quasi-experimental intervention study, survey data on self-perceived burden (Burden Scale for Family Caregivers, BSFC-s) from n = 154 informal caregivers of people without natural speech were collected at three time points between June 2018 and April 2021 from a postal survey. Qualitative interviews with n = 16 informal caregivers were conducted.

resultsCaregivers reported various stressors such as limited communication with the cared-for person and concerns about the living situation in adulthood. Diverse resources and effective coping strategies, which the caregivers refer to when dealing with stressors, could also be identified. Burden was significantly reduced in the intervention group compared to the control group. According to the results of the qualitative study, AAC use led to better communication skills and a reduction in behavioural problems and thus a decreased burden.

conclusionsThe AAC intervention seems to have a positive impact on self-perceived burden. Linkages between intervention components and burden reduction as well as stressors and coping strategies could be identified and provide an evidence-based foundation for developing future holistic interventions for families with individuals without natural speech.

trial registrationGerman Clinical Trials Register (DRKS); ID: DRKS00013628 (registered on 05/02/2018).

Indexed as

CaregiversSpeechAdaptation, PsychologicalAdultCase ManagementCounselingHumansQuality of LifeBurdenCaregiverComplex interventionInterviewsMixed-methods

Identifiers

PMID36536337
PMCPMC9761644

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.