Dataset Information

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study.

ABSTRACT:

Background

Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). Therefore, the objectives of this study were: 1) to compare characteristics of informal caregivers and care receivers and caregiver outcomes - at home and in ILTC; 2) to study the association between these characteristics and positive and negative caregiver outcomes; 3) to investigate the moderating effect of the setting (at home vs. ILTC) on these associations.

Methods

A cross-sectional study was conducted using the TOPICS-MDS DataSet. A total of 5197 Dutch dyads were included. The average age of the care receivers and caregivers was respectively 80.7 years and 63.2 years. Several sociodemographic, health-related and caregiving-related characteristics of care receiver and caregiver and two caregiver outcomes (i.e., subjective burden and care-related quality of life) were included in the analyses.

Results

Caregivers in both settings experienced comparable levels of subjective burden. Caregivers at home had slightly lower care-related quality of life than caregivers in ILTC. Several care receiver characteristics (i.e., male sex, married/cohabiting, more morbidities/disability, and less self-perceived health/psychological wellbeing) and several caregiver characteristics (i.e., female sex, being younger, living together with the care receiver, more objective burden, less self-perceived health, and more support) were associated with an increase in burden and/or a decrease in care-related quality of life. Some of these associations were stronger for dyads at home compared to dyads in ILTC.

Conclusions

Informal caregiving does not stop with admission to an ILTC facility. Both settings need an informal caregiving policy, which is (1) tailored to the individual characteristics of care receivers and caregivers; (2) pays attention to the identified risk groups; and (3) reduces the negative caregiver outcomes and emphasizes the positive outcomes at the same time.

SUBMITTER: Metzelthin SF

PROVIDER: S-EPMC5635563 | biostudies-literature | 2017 Oct

REPOSITORIES: biostudies-literature

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Publications

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study.

Metzelthin Silke F SF Verbakel Ellen E Veenstra Marja Y MY van Exel Job J Ambergen Antonius W AW Kempen Gertrudis I J M GIJM

BMC geriatrics 20171010 1

<h4>Background</h4>Our ageing society is putting tremendous strain on public health and welfare programs to meet the needs of ageing individuals. Promoting informal caregiving is one way for policymakers to reduce this burden. However, caregiving may be experienced as stressful and is associated with adverse health consequences. While quite a lot of research focuses on caregiving for community-dwelling older adults, little is known about informal care in institutionalised long-term care (ILTC). ...[more]

PMID: 29017453

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Project description:IntroductionInformal (unpaid) caregivers play an essential role in caring for older people, whose care needs are often not fully met by formal services. While providing informal care may be a positive experience, it can also exert a considerable strain on caregivers' physical and mental health. How to best support the needs of informal caregivers remains largely debated. This umbrella review (review of systematic reviews) aims to evaluate (1) whether effective interventions can mitigate the negative health outcomes of informal caregiving, (2) whether certain types of interventions are more effective than others, (3) whether effectiveness of interventions depends on caregiver/receiver, context or implementation characteristics and (4) how these interventions are perceived in terms of acceptability, feasibility and added value.Methods and analysisWe will include systematic reviews of primary studies focusing on the effectiveness of interventions (public or private, unifaceted or multifaceted, delivered by health or social care professionals or volunteers) aimed at reducing the impact of caregiving on caregivers' physical or mental health. This will also include quantitative and qualitative syntheses of implementation studies. The literature search will include the following databases: Medline, CINAHL, PsycINFO and Web of Science. A key informant-guided search of grey literature will be performed. Quality appraisal will be conducted with the AMSTAR-2 checklist for quantitative reviews and with an ad hoc checklist for qualitative syntheses. Narrative and tabular summaries of extracted data will be produced, and framework synthesis will be employed for weaving together evidence from quantitative studies in effectiveness reviews with findings on implementation from qualitative studies.Ethics and disseminationThis umbrella review will use data from secondary sources and will not involve interactions with study participants; it is thus exempt from ethical approval. Results will be presented at international conferences and will be published in a peer-reviewed journal.Prospero registration numberCRD42021252841.

Project description:ObjectiveHome-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.DesignCross-sectional questionnaire study.SettingThe Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.ParticipantsOverall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.Main outcome measurePlanned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach's ? was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.ResultsExploratory and confirmatory factor analyses identified 26 items on five factors: 'helping spouses plan their futures' 'helping caregivers alleviate any regrets regarding their care', 'understanding the bond between a couple', 'providing support for anticipatory grief', and 'addressing spousal caregivers' emotions after their spouses' deaths'. The final model showed acceptable goodness-of-fit indices. The Cronbach's ? for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.ConclusionsThis scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.

Project description:OBJECTIVES:Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. DESIGN:Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). SETTINGS:PLH children were recruited from a specialised paediatric/neurological department. PARTICIPANTS:The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. OUTCOMES MEASURES:From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psycho-behavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). RESULTS:Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20?to 81±12). Eighty per cent of them had more than 5?hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. CONCLUSIONS:Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. TRIAL REGISTRATION NUMBER:NCT02400528.

Dataset Information

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study.

Background

Methods

Results

Conclusions

Publications

Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study.

Similar Datasets

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