Dataset Information

Informal care: choice or constraint?

ABSTRACT:

Background

'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.

Aim

In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.

Methods

Data were derived from 1100 responses to a postal survey conducted in a British city. Statistical tests of association and multivariable regression modelling were applied to study the factors associated with choice in entering a caring role and the association that choice in entering a caring role had with carers' well-being.

Results

We found that informal care was generally perceived to be a free choice, albeit in most cases, a choice was also constrained by duty, financial or social resources. Having a sense of free choice in entering care was strongly and positively associated with the carer's well-being.

Conclusion

The study findings are consistent with a view that enabling individuals to have more choice in their caring roles may be beneficial.

SUBMITTER: Al-Janabi H

PROVIDER: S-EPMC5873411 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Informal care: choice or constraint?

Al-Janabi Hareth H Carmichael Fiona F Oyebode Jan J

Scandinavian journal of caring sciences 20170412 1

<h4>Background</h4>'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.<h4>Aim</h4>In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.<h4>Methods</h4>Data were derived from 1100 responses to a postal survey conducted in a British city. Statistical tests of association and multivariable r ...[more]

PMID: 28401583

Similar Datasets

Project description:Background Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative condition with a mean life expectancy of 3 years from first symptom. Understanding the factors that are important to both patients and their caregivers has the potential to enhance service delivery and engagement, and improve efficiency. The Discrete Choice Experiment (DCE) is a stated preferences method which asks service users to make trade-offs for various attributes of health services. This method is used to quantify preferences and shows the relative importance of the attributes in the experiment, to the service user. Methods A DCE with nine choice sets was developed to measure the preferences for health services of ALS patients and their caregivers and the relative importance of various aspects of care, such as timing of care, availability of services, and decision making. The DCE was presented to patients with ALS, and their caregivers, recruited from a national multidisciplinary clinic. A random effects probit model was applied to estimate the impact of each attribute on a participant’s choice. Results Patients demonstrated the strongest preferences about timing of receiving information about ALS. A strong preference was also placed on seeing the hospice care team later rather than early on in the illness. Patients also indicated their willingness to consider the use of communication devices. Grouping by stage of disease, patients who were in earlier stages of disease showed a strong preference for receipt of extensive information about ALS at the time of diagnosis. Caregivers showed a strong preference for engagement with healthcare professionals, an attribute that was not prioritised by patients. Conclusions The DCE method can be useful in uncovering priorities of patients and caregivers with ALS. Patients and caregivers have different priorities relating to health services and the provision of care in ALS, and patient preferences differ based on the stage and duration of their illness. Multidisciplinary teams must calibrate the delivery of care in the context of the differing expectations, needs and priorities of the patient/caregiver dyad. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-021-06191-z.

Dataset Information

Informal care: choice or constraint?

Background

Aim

Methods

Results

Conclusion

Publications

Informal care: choice or constraint?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure