This proposal is subject to change as the project develops.
1. Research Title:
Outcomes for Carers – how do we ensure that training and information support contributes to positive outcomes for carers?
2. Background / Rationale
A carer is defined as a person looking after another person. This proposal focuses on informal carers in Glasgow City who look after a relative or friend and do not receive payment. Carers may include parents looking after a disabled child, a spouse caring for their husband or wife who suffers with dementia, a young carer who supports a household due to a parental illness or someone looking after a person with a terminal illness. Carers arise in all parts of the City and from all social groups. The census in 2011 (National Records of Scotland 2014) identified that there were 53,914 people (9.09% of total population) who noted that they were carers in Glasgow City. Of this group, 17,110 people reported that they provided more than 50 hours of care per week, which is a significant level of care provision.
Carers provide a significant level of care and support to people in the community. In the absence of the carer, or if there was a breakdown of the carer support, there is a risk that statutory or third sector community services or even hospital services would need to take on this role. (Murray 2014, Roy 2011, Clarke 2001, Davis 2010, Silva et al 2013). Many carers provide significant levels of sophisticated care supporting physical and psychological needs of the cared for person. In many cases, carers are isolated and there is an impact on their own physical, mental, social and emotional health (Scottish Government 2010, Silva et al 2013, Turner & Street 1999). The Scottish Government and health and social care services recognise that carers require support and have identified a key component of this support in the form of training for carers. This can take the form of skills-based training such as moving and handling, first aid or management of a specific aspect of an illness such as dealing with fits. Training can also be condition specific, where the aim is for the carer to better understand the condition and how it can be managed or training can support the carer through wider information, training to support their employment or to build their confidence.
In Glasgow City, carers are identified through a variety of means and at different stages. This might include at diagnosis (such as autism, Dementia, cancer) or through stages of the pathway that the cared for may be involved in (accident and emergency, hospital admission / discharge, primary care). Once identified, carers have a right to an assessment of their needs. This may include information, advocacy, income maximisation and also training in order to maintain the caring relationship. (Scottish Government 2010)
Carers who progress from an initial assessment through to a detailed assessment, work closely with a support worker to develop an individual outcome based support plan. This includes a mechanism to record their need and to measure the effectiveness of the support they receive.
3. Research Questions
There is significant investment in training for carers. This project will investigate whether this investment is targeted appropriately and in particular whether the assessment and subsequent delivery of training are undertaken at the right stage. Carers’ perceptions of the training will be explored to determine whether the approaches used reduce any barriers to engaging in training.
The research aims to ask:
• Are carer needs identified appropriately at different stages of the journey?
• If training is identified and delivered, does it contribute to the carer’s outcomes?
• What are the barriers to carers engaging in training?
The research will look at outcomes of training support from the perspective of both the individual carer and also the organisation/s involved. This dynamic will be important to understand at each stage of the research project.
4. Theory / Methodology
The research project aims to focus on outcomes for carers, by asking – how do we ensure that training and information support contributes to positive outcomes for carers?
There are a number of data sources to elicit information to help to answer various components of this, and to understand if carer needs are identified appropriately at different stages of the carer Journey and if training is identified, whether it meet the carer’s needs.
Each carer can complete an initial assessment of their needs and this may be sufficient to signpost the person to an appropriate service provision that delivers what they require. For some carers, they will progress through a system where they receive a more comprehensive assessment which leads to the development of an individual plan, designed to meet their requirements. The plan may include referral to social work services to support higher level provision of care needs (such as equipment or housing alterations), referral onto welfare benefits advice to maximise any opportunities for benefits or other services such as advocacy support or links to self-help or other groups. The various assessments and the outcome based support plan will help to identify a range of information such as demographic details of carers, the level of care they provide and to whom and also the ongoing assessment detail and subsequent individualised needs that have been identified.
Identification of any training needs to support them to directly provide a carer role or other needs that would help them with their own health and wellbeing needs is also part of the comprehensive assessment.
The assessment then helps to develop an individual plan for the carer that is reviewed on an ongoing basis with the carer. This is known as an “Outcome Based Support Plan”. The aim is to make a plan focused on working towards the personal outcomes identified by the carer, rather than picking up organisational objectives, although ultimately the objective is to maintain the caring relationship.
The assessments and plans form part of a source of data that will show progression of the outcome based support plan.
This research will gain information to answer the research questions from the perspective of the carer as a service user / client, but will also focus on working towards personal outcomes identified by the carer. The different perspectives of this are illustrated in the “Leading for Outcomes Guide” (IRISS 2010) a training guide for social work staff, which examines outcomes activity from both the client and service provider perspective. An example of this is whether the supported person’s view contributes to the decision-making process or if it is in fact central to the process. Taking outcomes from a distinctly individual perspective is shown to be a core basis of developing a closer relationship, increasing the individual’s engagement and commitment and ensuring a more appropriate understanding of what the person’s goals are, given that they have formed and agreed them themselves. There are a number of objectives that require to be delivered around support to carers (numbers of assessments, delivery of training, reviews of plans etc), but ultimately the outcome that will be focussed on is the delivery of outcomes that are designed around the individual needs of the carer.
A series of interviews will be undertaken with a number of carers and also a number of stakeholders who are involved in the assessment process and development of individualised outcome based support plans. The carers will be selected randomly from each of the Sectors of Glasgow City area. The criteria for inclusion are specified in section 5. The approach to random selection will use a unique carer reference number rather than named details. Interviews with the 5 stakeholders will also be assigned randomly based on the three sectors. There are around 20 staff in total who undertake this role.
5. Methods
There are a range of stakeholders involved in identification, assessment of need and support to carers. This includes:
• Carers – represented across specific Groups – age / condition / location
• Cared for person/other family or friends
• Service provision – Social Work Carer Centre/s and or Third Sector Carer Centre/s
To answer the research questions, the author aims to engage with stakeholders using existing data from the pathway (initial and comprehensive assessment), the outcome based support plan and also existing evaluation of training. In addition, the approach will use a semi-structured focused conversation to elicit information.
The initial assessment (appendix B) identifies the level and priority of support that the carer requires. Some carers require only basic signposting and contact will be limited. For others, the ongoing support needs may be significant. A more comprehensive assessment is undertaken with those with a higher level of need and from this, the assessor (usually within a social work carer centre) begins to formulate the individual plan for the carer, including the outcome based support plan.
Stage 1 of the research will aim to understand the progression across the initial and comprehensive assessments, outcome based support plans and the delivery of training, by reviewing the information for 20 cases. (There will be individuals who have a comprehensive assessment and who are not referred on for training. A separate process as part of a review of the carer pathway is examining the wider assessment process and to understand opportunities to improve this.
This stage will also collect detail of the characteristics of the 20 cases including;
• Demographic information- age / gender / location
• Detail of the care role – detail of the cared for- age / condition / lives with / measure of time spent caring / other carers / family / length of time caring
In order to track the pathway of carers throughout this journey, it will be necessary to identify established carers already engaged with the services to the point of them having been involved in a review of their individual outcome plan.
Stage 2 of the research will be an analysis of training. This will examine the 20 cases in detail and will also put this in the context of the overall information available. The training records will show;
• Type of training / course length
• Day / time of training
• Nature of condition
• Attendance rate
• Evaluation (examining evaluation of facilities / process including narrative comments)
Stage 3 will examine the review of the outcome based support plan. The aim will be to understand if the issues identified as training needs for carers were followed through to specific training, whether the individual attended the programme and at review stage whether further training has been identified either to further address the same need or to identify additional training needs.
The aim will be to identify the pathway from initial assessment through to review of outcome based support plan for the 20 cases in detail
Stage 4 of the research will be to understand issues that may impact on the carer in identifying, taking part in and benefitting from training identified.
This will be achieved through a series of structured interviews. It is envisaged that these will also be recorded to assist with the data collection process. The interviews will be targeted at:
• 5 carers who have been through the process – the same identified cohort that have been reviewed in detail (If consent not achieved from initial 20 cases for 5 to engage in interview process, then the balance would be found from alternative carers who meet the inclusion criteria)
• 5 Other stakeholders who have been involved in the assessment of need, review or delivery of training (Carer support workers, training co-ordinators)
The interviews will be structured to identify gaps, successes and opportunities for development in relation to:
• Analysis of need
• Delivery of training
• Evaluation to compare with desired outcomes (noting both the perspectives of carer and other stakeholders)
• Recognition of barriers to training
Inclusion Criteria for Cases and Interviews
The inclusion criteria for cases will be;
• Availability of initial assessment
• Availability of comprehensive assessment
• Existence of outcome based support plan
• Glasgow City Carer (May include all care groups)
• Referral to training co-ordinator
• Attendance at training programme/s
• Review of outcome based support plan
This will be anonymised to ensure confidentiality and will highlight where training needs have been flagged (and at what stage) and where onward referrals have been made for a training need.
6. Ethical Considerations
There are a range of factors that may influence ethical consideration for a research project. Ethical issues are considered to safeguard the rights, safety, dignity and wellbeing of people who are engaged in research. This includes staff, services users and other stakeholders who may be involved (Carers, relatives, others).
For NHS research, this will include questions around the selection of subjects (randomisation, inclusion / exclusion), whether the information gathered will be generalisable (development of new knowledge to be used in approaches across a wider group of individuals) and finally whether the information or process would impact or change the process of treatment or intervention.
NHS Greater Glasgow & Clyde uses a process that asks first for detail of the proposed project and then uses a questionnaire to ascertain whether the proposal is research and thus requires a detailed application for ethical approval, or audit / evaluation which does not require this process. The questionnaire is derived from the National Research and Ethics Service, which is part of the Health Research Authority. This guidance was revised in 2013. (HRA 2013) (http://www.hra.nhs.uk/research-community/before-you-apply/determine-whether-your-study-is-research/). An individual is assigned to support the process to consider the requirements for full ethical approval. (The questionnaire is available at http://www.hra-decisiontools.org.uk/research/)
For the purposes of this study, the process identified that full ethical approval was not required as it was defined as an evaluation / audit project.
Knowledge Exchange & References
It is proposed to share the findings of the research in a number of ways. This will include feedback to stakeholders such as the Carer Partnership, Carer Reference Group, Social Work Carer Manager meetings and also the local Carer provider services.
Recommendations and any changes to existing processes would be raised through the Carer Partnership (Planning / Steering Group).
Other opportunities to publish information include local and service briefings, carer newsletters, service websites and through events / conferences at a local or wider level.
The research will be shared through the PROP2 website and there will be opportunities to develop articles for publication to share the findings with a wider audience.
References:
Clarke N. (2001) Training as a vehicle to empower carers in the community. Health and Social care in the Community. 9 (2), 79 – 88.
Davis C (2010) A training Course that empowers hard to reach carers. Nursing Older People. Vol 22; 10 28-30.
IRISS (2010) Leading for Outcomes – A Guide. Institute for Research and Innovation in Social Services.
Murray A. (2014) The effect of dementia on patients, informal carers and nurses. Nursing Older People June 2014 | Volume 26 | Number 5
National Records Office for Scotland (2014) Scotland’s Census 2011 http://www.scotlandscensus.gov.uk/ Scottish Government
Roy D & Gillespie M (2011) Who Carers for the Carers? A student’s experience of providing carer support and education. British Journal of Nursing Vol 20 ; No 8 484-488.
Sahar J et al (2003) Improvement of family carers’ knowledge, skills and attitudes in caring for older people following the implementation of a Family Carers’ Training Program in the community in Indonesia. International Journal of Nursing Practice 2003; 9: 246–254
Scottish Government (2010) Caring Together: The Carers Strategy for Scotland 2010 – 2015. Scottish Government & COSLA
Silva A.L., Teixeira H.J. et al (2013) The Needs of Informal Caregivers of Elderly People Living at Home. Scandanavian Journal of Caring Sciences 27 ; 792 – 803.
Turner S.A. & Street H.P. (1999) Assessing Carers’ Training Needs. Aging & Mental Health. 3(2) : 173 – 178.