The beliefs and perceived needs of the informal carer need to be taken into consideration by care providers, particularly as seeking home care support can challenge normative beliefs for some caregivers. Barriers to the use of home care by people with LTCs include not wanting additional help, the negative experiences of others, and inappropriate or insufficient services. The importance of informing caregivers of the relevant advantages and quality principles of using health and social care home services is central to reducing the number of informal caregivers who think they do not need it.
There has been very little focus in existing research on decision-making and the use of home care: in particular, the point at which people with LTCs, or their informal carers, decide they need to seek home care. We do not know how people go about organising that support, what information sources and resources they use or would like to use, and what the key issues around the use of home care support are for them. There is particular concern that self?funders, who account for an estimated 35% of the social care market, remain largely unsupported by local councils and receive limited information, advice and support.
In order to better understand how people with LTCs and their carers perceive home care support and the decision?making processes associated with accessing home care support, a qualitative study is proposed.
This project will focus on the use, or potential use, of quality information in decision-making about home-based social and health care services. The specific aims are:
- To explore the process of decision-making for people with LTCs and their carers, when help is needed beyond that provided by family and friends
- To identify the information resources and sources people use, or would like to use, in making these decisions
- To contribute to discussions around what constitutes ‘good information’
A qualitative approach allows an engagement with the subjective experiences of people with LTCs and their informal carers. We want to explore how people understand and make sense of having services provided in their own homes. The first stage of the project will involve a secondary analysis (the analysis of data collected for a different purpose) of nearly 300 in?depth interviews from the data archive held by Healthtalkonline. Our analysis will involve a combination of supplementary analysis, focusing in more depth on sections of the data little considered in the original research, and amplified analysis, using several data sets to enlarge the sample.
The interviews used here were collected as part of the Healthtalkonline project: an online resource presenting the personal experiences of people with different health conditions. The overarching research question for the Healthtalkonline project is ‘What are the information, health and support needs of people diagnosed with xxx’. Each module includes in?depth interviews with between 30 and 50 people who have experience of the condition, or who are caring for someone with the condition. A maximum diverse sampling technique is used to ensure a broad range of experiences are incorporated, including age, gender, ethnicity, social class, geographical location, type and severity of condition.
Seven modules were selected for this analysis: carers of people with MS, carers of people with dementia, stroke, autism, heart failure, rheumatoid arthritis and Parkinson’s disease. This dataset incorporates a rich and diverse set of experiences, including both state?and self?funded participants.
The data will be analysed thematically using the organisational support of NVivo. The first twenty interviews will be carefully read and used to identify and create initial codes . A codebook will then be developed, listing the codes, descriptors for the codes and sample extracts. This codebook will be reviewed as subsequent transcripts are coded, and the codes reorganised into categories in an iterative process. The second, more conceptual, stage of analysis will involve the use of a visual mapping technique to explore key categories, and to make linkages and connections across the data.
The key findings emerging through this analysis will feed into and shape the development of the second stage of the project. This stage will use qualitative methods) to investigate the type and format of information that people with LTCs and their carers find most useful in making decisions around the use of home care support.
Timing and Outputs
The project runs from November 2011 to October 2012. The outputs will include:
- A paper describing the findings from the secondary analysis of the Healthtalkonline dataset. This paper will explore the beliefs and perceived needs of people with LTCs and their carers in relation to home care support. It will identify a typology of different orientations to home care services.
- A paper describing the findings of the primary data collection and analysis, with a discussion about what type and format good quality information relating to the provision of home care services takes, and why.