Experiences of social care in the health and care experience survey 2015/16: analysis of free-text comments

Chapter 1: Introduction

Policy Context

There are several key social and economic factors impacting on the planning and delivery of social care in Scotland. Since 2006, there has been a 22% rise in the number of people aged between 65 and 75 years old and a 16% increase in over 75s ( NRS, 2017). Health and social care services are facing growing demands and reducing numbers of unpaid carers, due to the changing age structure of society, in a context of economic uncertainty, efficiency savings, and welfare reforms.

The 2020 Vision

In 2011, the Scottish Government set out a 2020 Vision for achieving sustainable quality in the delivery of healthcare services across Scotland, in the face of the significant challenges of Scotland's health record, our changing population and the economic environment. All healthcare policy in Scotland drives the delivery of this Vision, which states:

By 2020 everyone is able to live longer healthier lives at home, or in a homely setting and, that we will have a healthcare system where:

• We have integrated health and social care
• There is a focus on prevention, anticipation ('forward planning') and supported self-management
• Hospital treatment is required, and cannot be provided in a community setting, day case treatment will be the norm
• Whatever the setting, care will be provided to the highest standards of quality and safety, with the person at the centre of all decisions
• There will be a focus on ensuring that people get back into their home or community environment as soon as appropriate, with minimal risk of re-admission

(Scottish Government, 2011)

As part of the 2020 Vision, a suite of policies affecting the planning and delivery of health and social care have been implemented in recent years. Together, these policies aim to fundamentally change the way social care services are delivered in Scotland.

The Social Care (Self-directed Support) (Scotland) Act 2013

The Act introduced fundamental changes to the way social care services are delivered in Scotland. The principles of choice and control are at the heart of self-directed Support ( SDS), which aims to provide individuals with more autonomy in relation to care and support. SDS is still in its infancy in Scotland and there is a lack of empirical research about people's experiences of social care under SDS.

The integration of health and social care

Integration aims to provide better joined up care to help improve the quality of health and social care in Scotland, through an emphasis on preventative and anticipatory care (Scottish Government, 2016a). Implementation has taken place at different stages across Scotland, however all 31 partnerships were operational by 1st April 2016.

The Carers (Scotland) Act 2016

This legislation places a duty on local authorities to provide support to unpaid carers, subject to local authority eligibility criteria. The Act will take effect from 1st April 2018 and therefore will not be reflected in these comments.

The Health and Care Experience Survey

The Health and Care Experience Survey ( HACE) is our main national source of data for people's self-reported experiences of health and social care in Scotland. HACE is run every two years and the results are published on the Scottish Government website. As part of an internship with the Scottish Government, a student undertook analysis of free-text comments in responses to HACE 2015/16 which related to social care, with the aim of widening our understanding of the factors that affect people's experiences of social care and what matters to them.

Around 110,000 people responded to the HACE survey and just over 4,000 chose to provide comments about their experience of social care, in answer to the question:

"Do you have any other comments to make about the help, care or support that you receive?"

Comments were made by people providing and receiving care, as well as those commenting by proxy on behalf of someone else. This report presents the findings from analysis of this qualitative data and is complementary to the quantitative analysis which makes up the main report for HACE 2015/16 (Scottish Government, 2016b). Taken together, the two reports help to provide a clearer picture of social care experience in Scotland.

HACE 2015/16 results indicate that the majority of people are happy with the care and support they receive. Although there was a slight decrease by three percentage points from the 2013/14 survey, 81 per cent of respondents rated their overall help as excellent or good. People were most positive about being treated with respect (90 per cent) and were least positive about the coordination of health and care services (75 per cent) (Scottish Government, 2016b). This supplementary analysis of the free-text comments people made about social care provides insights into the factors that influence the quantitative data.

Comments covered an extensive range of issues relating to the planning, the coordination and management, and the delivery of social care services in Scotland. The support people described took many forms and was provided by a variety of professionals, as well as friends and families, to those with a wide spectrum of needs ranging from low level to more complex needs.

People were most positive about social care staff and relational aspects of care. This was accompanied by a strong and consistent message about the need for continuity of care, with regular workers who understand individual needs and preferences.

Methods and Reporting

Whilst the quantitative data from HACE provides understanding of the prevalence of particular issues and overall satisfaction levels, it does not provide an in-depth picture of everyday experiences of social care. The HACE survey aims to address this by including a free-text box for participants to elaborate on their answers where they can provide more detail about any specific areas that they feel are important to them. As noted above, 4,000 people chose to repond with additional comments. Irrelevant comments were omitted from the analysis - typically comments stating that no social care was required. Once these had been filtered out, 3,500 comments were left. The comments were thematically analysed using an inductive approach to coding. They were imported into NVivo and coded by theme as well as satisfaction level (positive, negative, neutral, mixed). Although initially a larger number of themes and subthemes were identified, some were merged due to their inter-related nature. Several of the themes are interlinked and transcend individual aspects of social care, but for ease of presentation, findings are structured in relation to five key areas:

• Access
• Coordination and management
• Delivery
• Outcomes
• Unpaid care

Limitations and caveats

It is important to note the methodological limitations associated with free-text comment analysis. Unlike open-ended questions, free-text boxes do not have a specific focus and therefore participants may discuss any issue that they feel is relevant. Whilst this provides flexibility and diversity in the issues that are covered, this can also result in a wide range of variability in the quality, scope, and relevance of the comments, which tend to be more detailed when negative in nature (Garcia et al, 2004). This, coupled with a lack of context or detail, can cause difficulties for the analysis (Garcia et al, 2004; O'Cathain and Thomas, 2004). Indeed, one of the limitations of the analysis is that there is no scope for probing to gain a more in-depth insight into the factors that have shaped people's views.

Due to issues of representativeness, the comments cannot be inferred to the wider population and therefore reporting frequencies of comments does not provide any meaningful addition to the analysis (Garcia et al, 2004). Nor can it be assumed that the comments presented here are exhaustive and cover all issues relevant to social care experience.

Despite the limitations, the comments provide useful insight into the issues that have an impact on social care experience and what things matter to people. They are therefore a useful tool for improvement purposes. The results should therefore be considered with this in mind and in the context of the 2015/16 quantitative results, alongside existing research into social care experience.

Summary of Findings

Access

A large proportion of comments were concerned with accessing support. Responses highlighted the need for up to date information and advice and the importance of person-centred support planning based on individual need.

Coordination and management

The coordination and management of services was another common theme. Comments emphasised the importance of collaborative working and communication between service providers and service users and their families. Responses also highlighted issues in relation to the coordination of support for people being discharged from hospital.

Delivery

The delivery of care was another recurrent theme. Comments highlighted the need for continuity of care, with regular workers at consistent times, to suit individual need rather than resource priorities. Responses focused on the relationships people had with care workers and how this impacted on the quality of care. Comments were also concerned with choice and control, and whether this was reflected in support packages.

Outcomes

The comments highlight the impact of care on people's everyday lives. They demonstrate how support can improve outcomes, by facilitating independent living, social participation, and recovery. However, this was perceived to be influenced by resources and whether support packages were person-centred.

Unpaid care

Many comments related to experiences of unpaid care and highlighted the interaction between paid and unpaid care and the importance of support for carers.