scholarly journals Caregiver Involvement in MS: Duty or Disruption?

2021 ◽  
Author(s):  
Jürg Kesselring ◽  
Alexey Boyko ◽  
Alice Laroni ◽  
Trishna Bharadia ◽  
Pieter van Galen ◽  
...  
Keyword(s):  
Caregiver Involvement

scholarly journals Family involvement and patient-experienced improvement and satisfaction with care: a nationwide cross-sectional study in Danish psychiatric hospitals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Marie Louise Svendsen ◽  
Trine Ellegaard ◽  
Karoline Agerbo Jeppesen ◽  
Erik Riiskjær ◽  
Berit Kjærside Nielsen
Keyword(s):  
Psychiatric Hospital ◽  
Hospital Care ◽  
Psychiatric Hospitals ◽  
Cross Sectional Study ◽  
Satisfaction With Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Caregiver Relationship ◽  
Patient Reported ◽  
Caregiver Involvement

Abstract Background Randomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care. Methods Using data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis. Results We consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95–2.99) to 4.09 (95% CI 2.48–6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact. Conclusion This nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.

scholarly journals National Survey of Juvenile Community Supervision Agency Practices and Caregiver Involvement in Behavioral Health Treatment

2019 ◽  
Vol 28 (11) ◽  
pp. 3110-3120
Author(s):  
Angela A. Robertson ◽  
Matthew Hiller ◽  
Richard Dembo ◽  
Michael Dennis ◽  
Christy Scott ◽  
...  
Keyword(s):  
Behavioral Health ◽  
National Survey ◽  
Community Supervision ◽  
Health Treatment ◽  
Behavioral Health Treatment ◽  
Caregiver Involvement ◽  
Agency Practices

scholarly journals Can in-hospital or post discharge caregiver involvement increase functional performance of older patients? A systematic review

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Margaretha van Dijk ◽  
Jasmien Vreven ◽  
Mieke Deschodt ◽  
Geert Verheyden ◽  
Jos Tournoy ◽  
...  
Keyword(s):  
Systematic Review ◽  
Older Adults ◽  
Older Patients ◽  
Functional Performance ◽  
Care Pathway ◽  
Intervention Group ◽  
Post Discharge ◽  
Home Setting ◽  
Randomized Controlled ◽  
Caregiver Involvement

Abstract Background Regaining pre-hospitalization activity levels is only achieved in 30–50% of older patients. Extra physiotherapy time has been proven to improve functional outcome and shorten length of stay, but is costly. Considering their key role in caring for older people, involving informal caregivers in rehabilitation might further improve functional performance. Aim To determine if in-hospital or post discharge caregiver involvement can increase functional performance in older adults. The secondary aim was to determine if caregiver involvement can influence, quality of life of patient and caregiver, medical costs, readmission rate, discharge location, and mortality. Design Systematic review with narrative synthesis. Methods The electronic bibliographic databases MEDLINE, Embase, CINAHL, Cochrane and Web of Science were searched for (quasi) experimental and observational studies, with the following inclusion criteria; caregiver involvement regarding functional performance, mean age over 65 years, admitted to a hospital unit and subsequently discharged to their home setting. Risk of bias was assessed with the Rob 2 (randomized trials) and the ROBINS-1 tool (non-randomized studies). Results Eight studies of an initial 4683 were included: four randomized controlled trials, one prospective cohort study, one non-randomized controlled trial, one subgroup analysis of an RCT and one prospective pre-post study. All but one study included patients with stroke. Three types of caregiver interventions could be distinguished: a care pathway (inclusion of caregivers in the process of care), education on stroke and teaching of bed-side handling-skills, and caregiver-mediated exercises. The one study evaluating the care pathway reported 24.9% more returns home in the intervention group. Studies evaluating the effect of education and bed-side handling-skills reported higher effect sizes for several outcomes with increasing session frequency. All studies with caregiver-mediated exercises showed beneficial effects on functional performance, immediately after the intervention and within 3 months follow-up. Conclusion The findings of this review suggest that involvement of caregivers in the rehabilitation of older adults leads to better functional performance up to 3 months after initiation. However, evidence is low and mainly focusing on stroke.

scholarly journals The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making

2017 ◽  
Vol 100 (11) ◽  
pp. 2035-2046 ◽  
Author(s):  
Rebekah Laidsaar-Powell ◽  
Phyllis Butow ◽  
Cathy Charles ◽  
Amiram Gafni ◽  
Vikki Entwistle ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Family Caregiver ◽  
Treatment Decision ◽  
Treatment Decision Making ◽  
Caregiver Involvement

Fidelity is fundamental: intervention predictors in advance care plans in terminal cancer

2019 ◽  
pp. bmjspcare-2019-001917
Author(s):  
Lisa Vaccaro ◽  
Phyllis N Butow ◽  
Deborah Lee ◽  
Stephanie B Johnson ◽  
Melanie Bell ◽  
...  
Keyword(s):  
Family Caregiver ◽  
Skills Training ◽  
Audit Tool ◽  
Advanced Cancer Patients ◽  
Care Plans ◽  
Registration Number ◽  
Advance Care ◽  
Caregiver Involvement ◽  
Caregiver Report ◽  
General Communication

ObjectivesAssessing whether interventions are implemented as intended (fidelity) is critical to establishing efficacy in clinical research yet rarely applied in advance care planning (ACP) interventions. We aimed to develop and implement a fidelity audit tool for an ACP intervention.MethodsWe developed a fidelity audit tool assessing: (A) content; (B) quality (general communication, eliciting EOL preferences and prognostic communication); and (C) family/caregiver involvement. We audited (double-coded) 55 audio-recordings of ACP discussions delivered to advanced cancer patients and caregivers, within a clinical trial.ResultsFidelity to content was high: mean=9.38/11 but lower for the quality of general communication (mean=12.47/20), discussion of patient preferences (mean=4.67/7), prognosis (mean=3.9/6) and family/caregiver involvement (mean=2.67/4). Older patient age and caregiver religiosity were associated with higher fidelity. Higher fidelity to content was associated with the trial primary outcome of family caregiver report of patient wishes being discussed and met.ConclusionsFidelity to content, but not quality, of the ACP intervention is strong. Communication skills training is critical for ACP interventionists. Adherence was higher with older patients and religious carers, factors that may influence acceptance of death and readiness to undertake ACP, making the discussion easier.Trial registration numberACTRN12613001288718.

scholarly journals Caregiver involvement in interventions for improving children's dietary intake and physical activity behaviors

2020 ◽  
Author(s):  
Emily H Morgan ◽  
Anel Schoonees ◽  
Urshila Sriram ◽  
Marlyn Faure ◽  
Rebecca A Seguin-Fowler
Keyword(s):  
Physical Activity ◽  
Dietary Intake ◽  
Caregiver Involvement

scholarly journals Allocation of Treatment Responsibility and Adherence to Hydroxyurea Among Adolescents With Sickle Cell Disease

2019 ◽  
Vol 44 (10) ◽  
pp. 1196-1204 ◽  
Author(s):  
Susan E Creary ◽  
Avani C Modi ◽  
Joseph R Stanek ◽  
Deena J Chisolm ◽  
Sarah H O’Brien ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Shared Responsibility ◽  
Prescription Data ◽  
Cell Disease ◽  
Electronic Prescription ◽  
Appointment Adherence ◽  
Increased Risk ◽  
Complete Treatment ◽  
Caregiver Involvement

Abstract Objective Adolescents with sickle cell disease (SCD) are at increased risk for complications. Hydroxyurea is a medication that can ameliorate risk but to benefit, adolescents must adhere to treatment. Study aims were to describe how adolescents and their caregivers decided who was responsible for treatment tasks, to describe adolescents’ and caregivers’ responsibility for these tasks, and to examine if hydroxyurea adherence was associated with younger adolescent age, less discrepancy between adolescents’ and caregivers’ reports of adolescent responsibility, and higher caregiver involvement. Methods Twenty-nine dyads completed treatment responsibility measures. A combination of laboratory and electronic prescription data were used to determine hydroxyurea adherence and electronic medical records were used to determine appointment adherence. Results Few dyads agreed or planned how to complete treatment tasks. Adolescents shared responsibility with caregivers for medication-taking tasks. Adolescents perceived caregivers and caregivers perceived adolescents were overall responsible for treatment, especially for appointment tasks. Half of adolescents were adherent to hydroxyurea and half were adherent to appointments but medication adherence was not associated with age, discrepancy between adolescents’ and caregivers’ responses, or caregiver involvement. Conclusions Despite frequent hydroxyurea and appointment nonadherence, few adolescents and caregivers plan how to manage adolescents’ SCD treatment or perceive they are overall responsible. Future studies are needed to determine the factors that influence these perceptions and if increasing adolescent and caregiver treatment planning improves adherence and clinical outcomes.

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