Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

Zinkevich, Anna; Lubasch, Johanna Sophie; Uthoff, Sarah Anna Katharina; Boenisch, Jens; Sachse, Stefanie Kalén; Bernasconi, Tobias

doi:10.1136/bmjopen-2021-048789

Cited by 5 publications

(3 citation statements)

References 40 publications

(35 reference statements)

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“…22,40,41 Consequently, interventions should not only consider the needs of the AAC users, but also those of the informal caregivers. 42 In this regard, our study results indicate that the intervention positively influenced participation in AAC care as well as informal caregivers' openness towards AAC by involving them in all elements of the intervention and keeping them informed about the AAC user's development.…”

Section: Discussionmentioning

confidence: 64%

“Finding Common Ground” – Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech

Uthoff¹,

Zinkevich²,

Boenisch³

et al. 2022

JMDH

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Purpose Many care settings are characterized by collaboration between a variety of stakeholders. People without natural speech who rely on augmentative and alternative communication (AAC) are often strongly dependent on the involved stakeholders and collaboration among them. Since collaboration can be challenged by many barriers, this study examines the impact of a complex intervention on collaboration in AAC care. Methods In a quasi-experimental mixed methods intervention study which include AAC training, AAC therapy and case management, caregivers of AAC users were surveyed at 3 time points to assess collaboration and case management in the intervention versus comparison group. In addition, semi-structured focus group interviews were conducted with caregivers in the intervention group. Quantitative data were analyzed descriptively and by comparison of means. Qualitative data were analyzed using qualitative content analysis. Results The Mann–Whitney U -test showed significantly better collaboration in the intervention group with stakeholders that are more actively involved in AAC care, such as schools (p=0.026) and residential or social facilities (p=0.010), but not with passive stakeholders such as health insurance companies. Most aspects of case management were rated significantly better in the intervention group (p<0.001). The focus group results show mainly positive changes in collaboration with the active stakeholders, such as more commitment and openness toward AAC. Conclusion The results show a positive impact of the intervention on the collaboration between stakeholders involved in AAC care – especially with active stakeholders. In particular, the organization of care and the accompanying case management by the AAC consultation centers seem to positively affect collaboration.

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Section: Discussionmentioning

confidence: 64%

“Finding Common Ground” – Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech

Uthoff¹,

Zinkevich²,

Boenisch³

et al. 2022

JMDH

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“…Close family members or proxy professionals tend to be capable proxies, although proxy reports may be influenced by caregiving burden, especially for those who provide care to older adults or to people with chronic diseases/health condition. Proxy ratings of disability increased with caregiving hours and higher perceived burden, and proxies reporting more burden tended to report more patient impairment [ 20 , 59 ]. Evidence showed that caregiver burden may result in misleading representation of the older person’s functional status, specifically in regard to instrumental activities of daily living (IADL) items [ 60 ].…”

Section: Introductionmentioning

confidence: 99%

Measuring the reliability of proxy respondents in behavioural assessments: an open question

et al. 2023

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Background In behavioural assessment, information can be gathered from internally referenced self-reports or from proxy informants. Aims This study aimed to fine-tune a brief but reliable method for evaluating the proxy accuracy in cases where responses obtained from adult and older adults’ patient cannot be considered reliable. Methods We generated a set of items reflecting both overt and covert behaviours related to the basic instrumental activities of daily living. The psychometric properties of the content, factorial, and criterium validity of these items were then checked. The Proxy Reliability Questionnaire—ProRe was created. We tested the frequency of “I don’t know” responses as a measure of proxy reliability in a sample of healthy older adults and their proxies, and in a second sample of proxy respondents who answered questions about their parents. Results As expected, response precision was lower for items characterizing covert behaviours; items about covert compared to overt behaviours generated more “I don’t know” answers. Proxies provided less “I don’t know” responses when evaluating the parent, they claimed they knew better. Moreover, we tried to validate our approach using response confidence. Encouragingly, these results also showed differences in the expected direction in confidence between overt and covert behaviours. Conclusions The present study encourages clinicians/researchers to how well the proxy the patient know each other, the tendency of proxies to exhibit, for example, response bias when responding to questions about patients’ covert behaviours, and more importantly, the reliability of informants in providing a clinical assessment of neurocognitive diseases associated with aging.

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“…The group of people who use AAC is heterogeneous in terms of age, disability, and the extent of physical, intellectual, and communication limitations [ 14 ]. In a cross-sectional study, we have already found significant interrelations between caregiver burden and caregiver assessment of the health-related quality of life and functioning of people without natural speech [ 15 ]. Although it is unclear whether (1) higher burden leads to poorer above-mentioned outcomes for people without natural speech, (2) whether poor outcomes lead to higher burden, or (3) only the assessment of these outcomes is affected, the results can be seen as an indication of the major importance of burden in this care context.…”

Section: Introductionmentioning

confidence: 99%

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

Zinkevich

Uthoff

Wirtz

et al. 2022

BMC Health Serv Res

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Background People 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. Methods The 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. Results Caregivers 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. Conclusions The 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 registration German Clinical Trials Register (DRKS); ID: DRKS00013628 (registered on 05/02/2018).

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Caregiver burden and proxy-reported outcomes of people without natural speech: a cross-sectional survey study

Cited by 5 publications

References 40 publications

“Finding Common Ground” – Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech

“Finding Common Ground” – Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech

Measuring the reliability of proxy respondents in behavioural assessments: an open question

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

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