Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

Liljeroos, Maria; Ågren, Susanna; Jaarsma, Tiny; Årestedt, Kristofer; Strömberg, Anna

doi:10.1007/s11136-016-1400-9

Cited by 32 publications

(53 citation statements)

References 59 publications

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“…However, most of them reported neglecting their needs, so it might be possible that some of them are not even aware of their actual needs and possibilities for support in the healthcare or community setting. We believe that offering a supportive environment and facilitating discussion and sharing problems in education for HF patients and informal caregivers could further support their ability to deal with HF and enhance their quality of life [44]. Healthcare professionals also recognized patients' and informal caregivers' need for psychosocial support and emphasized that efforts to offer them support in the community setting should be made in the near future.…”

Section: Discussionmentioning

confidence: 99%

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Sedlar

Lainščak

Farkaš

2020

IJERPH

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Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

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Section: Discussionmentioning

confidence: 99%

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Sedlar

Lainščak

Farkaš

2020

IJERPH

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“…A randomized controlled trial found that the load and negative health effects did not significantly decrease after a follow-up program of relatives of patients with heart disease. Mapping relatives’ initial experiences may also provide a better customized follow-up program 44. This emphasizes the importance of both early and adapted support for relatives 34.…”

Section: Discussionmentioning

confidence: 99%

Next of kin’s protracted challenges with access to relevant information and involvement opportunities

Strøm¹,

Dreyer²

2018

JMDH

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BackgroundNext of kin are considered a resource for both the patient and the health service. Need for information varies with severity and duration of health changes. A clear requirement is about what to expect upon homecoming, and what supportive services are available. The picture of relatives’ access to involvement and information is still somewhat unclear.ObjectiveTo investigate what information, knowledge, and involvement next of kin considered important for managing their caring role and collaboration with their close relatives who experienced events that led to chronic illness.Design, setting, and methodsA qualitative exploratory design. Seventeen informants were recruited through various courses offered to relatives. Data were collected in 2017 from individual interviews, analyzed in an interpretative tradition, and involved qualitative content analysis.ResultsThe results reflect a long intervening period in between the activating incident and a clarification of the situation. This period was characterized by unpreparedness for duration of anxiety and amount of energy involved in balancing the relationship. Further, the interviewees saw retrospectively that information about disease and treatment was available, but they had to find such resources themselves. Information about how to handle the situation was almost absent. Ultimately, they were disappointed over not being involved.ConclusionPreviously provided prospective information about the embedded anxiety in the situation and consequences for relationships, involvement in patients’ services, and better communication about existing services seem to be significant. Health care professionals, especially in outpatient care, may improve their services by debating how they can implement family-oriented care in personalized treatment as usual. Focus on prospective information, early involvement, and relevant information about existing resources may empower relatives and relieve the experience of care burden.

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“…(Schwarz et al, 2008) In the five papers which reported secondary outcomes or primary outcome variables at a later time null findings were noted. (Agren et al, 2013;Agren et al, 2015;Liljeroos et al, 2015Liljeroos et al, , 2016Liljeroos, Agren, Jaarsma, & Stromberg, 2014a) These included outcomes such as quality adjusted life years, (Agren et al, 2013) carer tasks, burden or patient morbidity, Liljeroos et al, 2016) or non-sustaining differences at a subsequent measurement time. (Liljeroos et al, 2015;Liljeroos et al, 2014a) Deeper analysis identified perceived control, quality of life, preparedness to care, self-care, depression, social support and rehospitalization as the outcome variables with mixed (positive and null) findings (Table 3).…”

Section: Affective Outcomesmentioning

confidence: 99%

A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

Buck

Strömberg

Chung

et al. 2018

International Journal of Nursing Studies

101

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A B S T R A C T Background:Having support from an informal carer is important for heart failure patients. Carers have the potential to improve patient self-care. At the same time, it should be acknowledged that caregiving could affect the carer negatively and cause emotional reactions of burden and stress. Dyadic (patient and informal carer) heart failure self-care interventions seek to improve patient self-care such as adherence to medical treatment, exercise training, symptom monitoring and symptom management when needed. Currently, no systematic assessment of dyadic interventions has been conducted with a focus on describing components, examining physical and delivery contexts, or determining the effect on patient and/or carer outcomes.Objective: To examine the components, context, and outcomes of dyadic self-care interventions.Design: A systematic review registered in PROSPERO, following PRISMA guidelines with a narrative analysis and realist synthesis. Data Sources: PubMed, EMBASE, Web of Science, PsycINFO, and Cochrane Central Register of Controlled Trials were searched using MeSH, EMTREE terms, keywords, and keyword phrases for the following concepts: dyadic, carers, heart failure and intervention. Eligible studies were original research, written in English, on dyadic self-care interventions in adult samples. Review methods:We used a two-tiered analytic approach including both completed studies with power to determine outcomes and ongoing studies including abstracts, small pilot studies and protocols to forecast future directions.Results: Eighteen papers -12 unique, completed intervention studies (two quasi-and ten experimental trials) from 2000 to 2016 were reviewed.Intervention components fell into three groups -education, support, and guidance. Interventions were implemented in 5 countries, across multiple settings of care, and involved 3 delivery modes -face to face, telephone or technology based. Dyadic intervention effects on cognitive, behavioral, affective and health services utilization outcomes were found within studies. However, findings across studies were inconclusive as some studies reported positive and some non-sustaining outcomes on the same variables. All the included papers had methodological limitations including insufficient sample size, mixed intervention effects and counter-intuitive outcomes. Conclusions:We found that the evidence from dyadic interventions to promote heart failure selfcare, while growing, is still very limited. Future research needs to involve advanced sample size justification, innovative solutions to increase and sustain behavior change, and use of mixed methods for capturing a more holistic picture of effects in clinical practice. Contribution of the paper:What is already known about the topic?• Having support from an informal carer is important for heart failure (HF) patients • Dyadic (patient and informal carer) HF self-care interventions seek to improve patient self-care such as adherence to medical treatment, exercise training, symptom monitoring and symptom...

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Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

Abstract: NCT02398799.

Cited by 32 publications

References 59 publications

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Next of kin’s protracted challenges with access to relevant information and involvement opportunities

A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

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Long-term effects of a dyadic psycho-educational intervention on caregiver burden and morbidity in partners of patients with heart failure: a randomized controlled trial

Abstract: NCT02398799.

Cited by 32 publications

References 59 publications

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions

Next of kin&rsquo;s protracted challenges with access to relevant information and involvement opportunities

A systematic review of heart failure dyadic self-care interventions focusing on intervention components, contexts, and outcomes

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Next of kin’s protracted challenges with access to relevant information and involvement opportunities