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Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

Background: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers’ experiences over time.

Objectives: To investigate the experiences of informal carers of stroke survivors over time.

Design: Qualitative study.

Thu, 07/20/2017 - 15:13

Qualitative evaluation of a young carers' initiative

This focus of this article is a qualitative, evaluative study of three Crossroads young carers projects. Focus group discussions took place with 24 young people aged 11-16 years. Data were analysed using a thematic content analysis approach. The themes of the research were: experiences of being a young carer, peer support, opportunities for time out and purposeful activities. The personal characteristics of the participants give rise to a number of worrying conclusions, that relatively young people were found to be undertaking primary caring roles over long periods of time.

Thu, 07/20/2017 - 15:12

A reflection on the application of grounded theory in the exploration of the experiences of informal carers

The aim of this paper is to reflect on the application of a qualitative research method that presents novice researchers with a variety of challenges. It is suggested that prospective users of the grounded theory method should seek guidance from experts in the field. However, to find these experts has proved to be quite challenging. The research topic lends itself to a qualitative study in general using the grounded theory method in particular. 

Thu, 07/20/2017 - 15:12

Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers

Background  Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.

Thu, 07/20/2017 - 15:12

The interplay between social and cultural context and perceptions of cardiovascular disease

This paper seeks to explore the impact of social and cultural factors upon perceptions of the patients’ cardiovascular risk and intended lifestyle changes. Qualitative and quantitative research approaches were used. The sample was purposeful; matched groups of 10 first time post myocardial infarction (MI) patients, 10 informal (spouse, blood relative or partner) and 10 formal carers (nursing staff) were selected on a convenience basis. Personal interviews were conducted with participants, during which a semistructured questionnaire was completed.

Thu, 07/20/2017 - 15:12

Caregiver burden, time spent caring and health status in the first 12 months following stroke

OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months.

Thu, 07/20/2017 - 15:11

Constructing 'normal childhoods': young people talk about young carers

There has been a great deal of attention paid to young carers in recent research, social policy and service provision. In this paper we report on a survey and interview study of 46 young people aged 15 to 18, nine of whom had experience as young carers, to explore the ways in which young people construct the young carer and their disabled parent. A key theme arising from the interview data analysis is the construction of a series of normative assumptions about 'normal' childhood through which young carers and their disabled parent are viewed as non-normative and deficient.

Thu, 07/20/2017 - 15:11

Effect of the Meeting Centres Support Program on informal carers of people with dementia: results from a multi-centre study

Because of the complex nature of the problems that carers of persons with dementia encounter, several comprehensive support programs for carers were developed in the past decade. One such program is the Meeting Centres Support Program (MCSP) that integrates different types of support for persons with dementia and their carers, which have proved to be effective in practice and/or research.

Thu, 07/20/2017 - 15:10

Evaluation of a brief educational program for dementia carers: the AENEAS Study

Objective: To evaluate the efficacy of a practical, easily implemented, educational intervention in group format for informal carers of persons with dementia. Methods: Multi-centre, randomised, controlled, single-blind trial involving 292 family caregivers of patients with moderate dementia in Alzheimer's disease. Results: Participants valued program components which had a practical impact on their caring role. The intervention achieved minor effects on the participants' psychological quality of life and did not reduce carer depression.

Thu, 07/20/2017 - 15:10