Impact of NHS changes on access to participants

I have been working in healthcare research and development, in both the university and private sectors since 1999. Firstly, as a researcher at the University of York and latterly at my own company Arc. In that time I have undertaken research into many different areas of health from teenage pregnancy to cleanliness in primary care, from Walk in clinics to dentistry.

More recently I have been undertaking a development project for the NHS on developing the resilience of carers. Part of this project involves interviewing carers, who we have accessed through support groups and onward through snowballing. Here lies the rub. When approaching support groups, for the first time in my career I am experiencing resistance from group leaders in giving us access to their attendees. After probing, this resistance appears to be linked to concerns about the break up of the NHS and the involvement of private companies in healthcare. This has been stated overtly, an individual did not want to be involved as we were a private company, and more covertly with ourselves being described as a third party, outside the NHS and therefore not allowed access.

I am not arguing that being wary of allowing strangers to talk to groups is necessarily a bad thing, in fact there have been occasions when a little more care should have been taken. Rather what is interesting to me is how a narrative on the break up of NHS services is impacting on what gatekeepers think of as a legitimate person to give access to, and what they do not, and the onward consequences of this for research, development and evaluation.

Building the resilience of adults

We are working with Public Health at Wakefield to develop a resource for the development of resilience in adults. This short paper outlines the thinking behind this development.

Why adult rather than parent resilience?

A review of international evidence on What Works in Parenting Support was commissioned by the DFE in 2004. The review outlines messages for national policy from the evaluation literature, it argues that:

results show time and time again that it is difficult for stressed families to benefit from parenting programmes when they face multiple disadvantages, and thus policies that reduce everyday stresses in the lives of families will support parents in caring for their children.

Taking a public health approach to developing resilience in parents allows us to address their needs as adults. This approach suggests that developing ways to mange and cope with the stresses outlined, (and including public health outcome areas such as alcohol, substance misuse, obesity, smoking, safety, sexual health) can lead to better outcomes for the parent and child.

Developing resilience over the life course

Furthermore it builds on the work already undertaken in the developing the Wakefield Risk and Resilience framework for children aged 0-19 by:

• continuing the development of a competence based framework for ages 19+ into adulthood;
• bridging the gap between individual resilience at age 19 and the Early Years competences at ages 0-5, which support positive parenting.

It also allows practitioners to provide parenting support that goes beyond the immediate development of skills and build longer lasting competences, usable by the adult in different contexts of their own and their child’s life.

Building resilience in adults

Using the evidence on works in developing adult resilience we can develop a resource that not only works for parents, but for all adults. The competence based approach means that there is a core of behaviours that suggest resilience, alongside interventions or session plans that address the needs of particular groups of adults. For example interventions can be developed based upon the competences that address problems to do with, for example; homelessness, domestic violence, alcohol abuse, abusive relationships, sexuality, discrimination, drugs, well being, financial management, and mental health.

This approach suggests that parenting is one aspect of the adult in which resilience might help, but that there are also others that can also be influenced.

What is resilience really about, can we develop it and why might it be useful for carers?

Resilient people bounce back from adversities and manage the risks that they encounter and are happier.

More resilient carers will be less likely to be ill themselves; able to care for longer; able to care more effectively; able to delay the entry to long term care for the person they are caring for; less likely to use hospital and respite services inappropriately, and so forth.

 What is resilience?

 Edith Grotberg (1995) identifies three sources of resilience,’ What we have, what we are and what we can do.’ Resilience is not something that people either have or do not, resilience can be learned and as we learn we increase the range of strategies available to us when things get difficult.

 ’I have’: These are things in the environment that serve as protective factors that mitigate against the risks people experience. Examples are: a help line; a hospital; care services; support groups.

 ’I am’: Grotberg suggests that there are aspects of personality and enduring coping strategies that have been acquired by the person over time for dealing with risks.

 ’I can’: These are knowledge, skills, abilities, understandings, attitudes, techniques and ways of behaving that can be applied to help manage risks. We have called these competences.

 What we will do to help carers

Grotberg argues that the last group, ‘I can’, can be most easily developed to help people build their personal resilience to particular risks. We agree and have shown how to do this in our work with children and young people.

We are applying this knowledge to the needs of carers of people who have dementia. We will identify the risks they face, establish what competences are needed to manage these risks and develop a way for people to assess their own competence. Lastly, we will develop resources for people to build their personal resilience.

 

How do you engage the hard to reach required by funders and adopt an asset building approach

At a meeting we started talking about how you satisfy your funding requirements on engaging the hard to reach, whilst maintaining your organisation’s committment to an asset based approach.

It seemed that there was some degree of contradicition between these two aims.

That to establish that someone was hard to reach you needed to gather data on where they lived, what their circumstances were; did they have substance misuse issues, were they a single parent, a teenage mother, suffering from domestic abuse, unemployed, on benefits, an asylum seeker ot refugee; but to follow an asset based approach you need to look at what they can do, the skills, knowledge, connections and potential that an individual brings.

The difficulty here is that for projects fulfilling their funding criteria they need to establish the credentials of their users as hard to reach, before they can move onto building on their assets. This can mean that projects get stuck in the deficit model, trying to overcome the difficulties they are faced with. 

So how can projects work through this difficulty?

One way that has achieved some success is through providing a structured approach within a project once engagement has occured.

For example in project A the requirement is that hard to reach young people aged 16-19 are engaged in volunteering. The young people have to meet the hard to reach equirement for entering the course, but once on the course, they can be re-engaged as individuals with assets. Through a structured approach looking at what the young people can do, assets can be developed. Such a structured approach would need to develop resilience and well being as well as the skills needed as a volunteer. The difficulty in achieving this is the requirement for not only the young people to turnaround how they think of themselves but also the organisation and the project workers. This can require a large scale cultural change for the organisation, and needs to be supported by admin systems that reflect the difficulties involved.

I would be very interested to hear of any other approaches.

 

 

Parenting and resilience

I am currently in the midst of two pieces of work on parenting and resilience (three if you count my own parenting). This has given me opportunity to not only review my own research in this area but also the academic and practitioner literature. What I have found is that whilst there has been work on how parents might develop the resilience of their families, or how families might work together to become more resilient as a unit, there is relatively little on developing the resilience of parents for their own sake.

Why is this important you might ask, surely the role of a parent is by definition to do with developing the child. What I would to this is that many aspects of being a parent, whilst not directly to do with building the resilience of a child, allow for that to happen and may need resilience on the part of the parent. For example if a parent is in a situation of domestic violence they may have or need ways to make themselves and their children safe. If the loansharks are requesting payment, they may need to negotiate their way out of the situation. The aspects of resilience that demonstrated may help the child to develop their own resilience, but they will also help the parent to continue in her own life and to be resilient.

 

Volunteering, carers and caring

This week I have been writing up the interim evaluation of the Women Volunteers in Health project. The project aims to engage hard to reach women in volunteering through a supported and structured approach including training, counselling and on-going support. These women will then go out into their communities and spread their skills in health and social care, thereby engaging and enpowering other women, building a virtuous circle of engagement and social action.

Tom, my partner at Arc has been working on the other side of this health equation, interviewing carers about their experiences when their loved ones are in hospital, and the specific health received there for dementia patients. He is hearing stories of  frustration, despair, crisis, and resilience, alongside those of help received and communities coming together.

Both of these projects are based in communities which are generally portrayed as disadvantaged, both have brought forth stories of perseverance and resistance to the decisions and perceptions of others, and the road seemingly mapped out for those involved. Both of the projects deal with care, and show clear examples of how care can be passed from one individual to another, and the impact this can have not only on that one person, but on the wider community too. This is not the Big Society, but something far subtler, built on real experiences and social bonds.

I have…..I am…..I can…The Wakefield Risk and Resilience Competence Framework

Yesterday saw the launch of the Wakefield Risk and Resilience Competence Framework at the gorgeous Hepworth Gallery in Wakefield.

The launch makes the end of more than two years of work, developing a Framework based on evidence of what works in developing resilience, and addressing the Public Health outcome areas of alcohol and substance misuse, sex and relationships, child safety, smoking and obesity.

Arc have been involved from very early on, firstly reviewing the literature on resilience, then research with parents and children and finally developing the competence areas and the competences in each of them. This process included a team of Tanya Procter, Debbie Young, Dr Frances Darby and Jane Masterman. Between ourselves and Suzanne Gahlings and Denise Wheatman of Wakefield Public Health and Jonathan Cooper, the then PHSE lead for Wakefield Council, we distilled all this information into the eight competence areas of:

• Loving myself
• Expressing myself
• Working it out
• Being heard
• Living together
• Keeping safe
• Getting informed
• Knowing where I am going

In the Framework each of these contains those competences that a child needs to be resilient. The Framework is incremental and developmental, running from 0-19.

It was also felt to be important to link these competences to sessions and interventions that would address them. Many new sessions have been written as a part of the Framework, but also time has been spent linking existing materials to the competences and working with other organisations to look at where overlap exists and to include their materials.

The launch yesterday included the online assessment tool that brings all these aspects together. In developing the tool we at Arc (in particular Tom Chrisp) wrote over 1000 questions. These were tested with over 200 children from Wakefield who also helped us in rewriting the questions. The questions make up the online assessment tool, developed by Indigo,  which is designed to be used by the child in assessing their competence both before and after an intervention. It also allows the practitioner and the child to see distance travelled.  

You can see the Framework here: www.riskandresilience.org.uk

We would really like to hear what you think.