Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study

Navarta‐Sánchez, María Victoria; Ambrosio, Leire; Portillo, Mari Carmen; Ursúa, M. Eugenia; Senosiain, Juana M.; Riverol, Mario

doi:10.1111/jan.14476

Cited by 16 publications

(23 citation statements)

References 66 publications

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“…Although, there is a lot of knowledge on caregiving in ALS and the needs of CGs [20], established institutional structures to support informal caregivers and the families of the affected patients are still missing, as far as we know, in Germany and other countries. There are investigations of different strategies to relieve the families' caregiver burden in neurological disorders, like paid CGs instead of informal CGs and mobile gerontopsychiatric counseling services in dementia [21,22], psychological support for partners of patients with ALS [23], psychoeducational intervention in people with Parkinson's disease and their informal caregivers [24], or even new technologies like the use of a brain-computer interfaces-based home care system [25]. Nevertheless, none of these showed a widespread success, so as not to be implemented into standard care yet; therefore, unmet needs commonly remain unchanged.…”

Section: Introductionmentioning

confidence: 99%

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

et al. 2021

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Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.

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Section: Introductionmentioning

confidence: 99%

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

et al. 2021

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“…Repeated measures ANOVA to analyse. Low Quality of Life (PDQ-39) Pre 24.6 (+/−16.1), post 25.7 (+/− 16.6), 4 weeks 28.0(+/−17.3) vs pre 29.9 (+/− 16.2), post 31.9 (13.4), 4 weeks 28.8(+/−14.6) Pre-post: Group interaction p = 0.40, time interaction p = 0.31 Post-4 weeks: Group interaction p = 0.89, time p = 0.12 Other reported outcomes: Self-efficacy for managing chronic disease (6-item scale) Montgomery 1994 [ 33 ] USA People with PD who had applied to enrol on the Propath program. N = 322 Mean age: 68.1 yrs.…”

Section: Resultsmentioning

confidence: 99%

Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease

et al. 2022

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Background Parkinson’s disease is a complex neurodegenerative condition with significant impact on quality of life (QoL), wellbeing and function. The objective of this review is to evaluate the clinical effectiveness of self-management interventions for people with Parkinson’s disease, taking a broad view of self-management and considering effects on QoL, wellbeing and function. Methods Systematic searches of four databases (MEDLINE, Embase, PsycINFO, Web of Science) were conducted for studies evaluating self-management interventions for people with Parkinson’s disease published up to 16th November 2020. Original quantitative studies of adults with idiopathic Parkinson’s disease were included, whilst studies of atypical Parkinsonism were excluded. Full-text articles were independently assessed by two reviewers, with data extracted by one reviewer and reliability checked by a second reviewer, then synthesised through a narrative approach and, for sufficiently similar studies, a meta-analysis of effect size was conducted (using a random-effects meta-analysis with restricted maximum likelihood method pooled estimate). Interventions were subdivided into self-management components according to PRISMS Taxonomy. Risk of bias was examined with the Cochrane Risk of Bias 2 (RoB2) tool or ROBIN-I tool as appropriate. Results Thirty-six studies were included, evaluating a diverse array of interventions and encompassing a range of study designs (RCT n = 19; non-randomised CT n = five; within subject pre- and post-intervention comparisons n = 12). A total of 2884 participants were assessed in studies across ten countries, with greatest output from North America (14 studies) and UK (six studies). Risk of bias was moderate to high for the majority of studies, mostly due to lack of participant blinding, which is not often practical for interventions of this nature. Only four studies reported statistically significant improvements in QoL, wellbeing or functional outcomes for the intervention compared to controls. These interventions were group-based self-management education and training programmes, either alone, combined with multi-disciplinary rehabilitation, or combined with Cognitive Behaviour Therapy; and a self-guided community-based exercise programme. Four of the RCTs evaluated sufficiently similar interventions and outcomes for meta-analysis: these were studies of self-management education and training programmes evaluating QoL (n = 478). Meta-analysis demonstrated no significant difference between the self-management and the control groups with a standardised mean difference (Hedges g) of − 0.17 (− 0.56, 0.21) p = 0.38. By the GRADE approach, the quality of this evidence was deemed “very low” and the effect of the intervention is therefore uncertain. Components more frequently observed in effective interventions, as per PRISMS taxonomy analysis, were: information about resources; training or rehearsing psychological strategies; social support; and lifestyle advice and support. The applicability of these findings is weakened by the ambiguous and at times overlapping nature of self-management components. Conclusion Approaches and outcomes to self-management interventions in Parkinson’s disease are heterogenous. There are insufficient high quality RCTs in this field to show effectiveness of self-management interventions in Parkinson’s disease. Whilst it is not possible to draw conclusions on specific intervention components that convey effectiveness, there are promising findings from some studies, which could be targeted in future evaluations.

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“…Navarta-Sanchez et al, (2020) added that multidisciplinary educational interventions for informal caregivers of patients with PD had a positive significant effect on the psychological adjustment and coping skills with the multiple confrontation of PD. Those caregivers need health, social, and home care services to meet their variable needs over the deteriorating course of disease [68] .…”

Section: Discussionmentioning

confidence: 99%

Effectiveness of In-person Tele-support Management on Perceived Burden, Health-promoting Practices, and Sense of Coherence among Caregivers of Older Adults with Parkinson’s Disease

Khalil

Sorour

Shaala

et al. 2020

NILES journal for Geriatric and Gerontology

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Introduction:The number of older adults with Parkinson's disease (PD) in need for supportive care is on the rise all over the world and the Middle East region in specific. While there are spending efforts to expand formal long-term care services to respond to this growing demand, informal care forms the backbone of this disorder. Parkinson's disease is a complex degenerative disorder that leads to cognitive decline and restricted physical abilities, which require eventually a constant care. Caregiving responsibilities are frequently bestowed upon close family members who are often thrown into caring tasks without being prepared and mostly experience the challenges of informal caregiving in association with other life demands which all require a significant amount of energy, dedication, and time-commitment. These responsibilities often become overwhelming and can lead to substantial burden with experience of mental stress and physical exhaustion related to the caring role, which may not be addressed appropriately or therapeutically. The often rapidly deteriorating condition of this disease threatens health promoting activities and sense of coherence of PD family caregivers, as the duration of care is in most cases hardly foreseeable with a challenge of lacking information about the entitlements, benefits, and support services. Related to our study, the tele-support service comprised both virtual communication, practice, and information with face-to-face or in-person meetings with peers of caregivers and the researchers (gerontological nurses and geriatricians). Setting: Conducted in El-Hadara Orthopedic and Traumatology University Hospital, specifically neuropsychiatric outpatient clinic; affiliated to Alexandria University in Alexandria, Egypt. Subjects: 39 primary and secondary PD informal caregivers recruited after fulfilling the inclusion criteria Tools: The following 4 measures were applied: (1) Demographic, caregiving experience, and support needs of caregivers of PD Older Adults Structured Interview Schedule, (2) Zarit Caregiver Burden Interview Arabic Abridged version (ZCBI-A 12 items-short version), (3) Health-promoting lifestyle Profile II -52 items (HPLP-II scale), and (4) Antonovsky Sense of coherence scale-13 items (SOC-13). Results: Family caregivers scored significantly lower on all measures of health promotion and sense of coherence, and higher on burden which were the areas of significant improvement after the application of individualized-based one-to-one interview and telephone counseling combined with group-based videoconferencing in the intervention timeframes. Age, level of education, duration and number of hours spent in caregiving, and caregivers' category are significant predictor variables. Conclusion: In-person tele-support intervention holds considerable promise in addressing efficiently and effectively caregiving challenges and stressors, resources available, and the health-promoting concerns of PD family caregivers where and when assistance is needed. It also contributes to bridging t...

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Evaluation of a psychoeducational intervention compared with education in people with Parkinson's disease and their informal caregivers: a quasi‐experimental study

Cited by 16 publications

References 66 publications

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease

Effectiveness of In-person Tele-support Management on Perceived Burden, Health-promoting Practices, and Sense of Coherence among Caregivers of Older Adults with Parkinson’s Disease

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