What is perfectionism?

We often use the term ‘perfectionist’ in a light-hearted way, to refer to a friend or colleague who’s being that bit too fussy about something. However, research suggests that having higher levels of perfectionism as a personality trait is one of the strongest factors which can reduce our resilience and make us vulnerable to stress (Johnson et al., 2011). At its heart, perfectionism describes the tendency to hold rigid, unrelenting, high standards. These are the kind of high standards that don’t bend in response to stress and don’t allow for excuses. It has been suggested that there are three types of perfectionism: self-oriented perfectionism, where we impose strict and high standards on ourselves, other-oriented perfectionism, where we impose strict and high standards on others, and socially prescribed perfectionism, where we believe that other people demand overly high standards from us (Hewitt and Flett, 1991). These three types of perfectionism cluster together – that is, if you are high in one, you are likely to be high in others.

What’s this got to do with resilience?

If having more of this trait makes us vulnerable to stress, what can this tell us about resilience? Well, every positive factor has a negative opposite – and every negative factor has a positive opposite. So if more perfectionism is bad, then less is good; and if perfectionism describes rigid, high standards, then the other end of this spectrum is mental flexibility (Figure 1).

perfectionism 1

It’s not high standards that are the problem

Let’s be clear, reducing perfectionism isn’t about lowering high standards. Having high standards is often a strength, driving people to make great achievements. The problem is not the standards themselves, but the fact that they are rigid and inflexible. Aiming high when you’re feeling strong can be positive, but insisting on reaching the same standard when you’re under unusually high pressure can be exhausting. There’s a need to maintain personal equilibrium, to adjust standards in response to what is manageable, given the situation. Doing this can ensure that you bend without breaking, and feel ready to return to full strength when your situation changes. On the other hand, piling on the pressure to meet overly high standards at all times is a recipe for burnout. 

Types of inflexible thinking

There are different thinking habits we can fall into that feed perfectionist thinking and reduce our ability to be flexible. These kinds of thinking habits are inflexible, rigid and demanding. Some examples are:

  • Black-and-white thinking. This is where you lose sight of the grey areas, and go into a mode which is ‘all or nothing’. The kind of thoughts you might have are “Anything less than the best is unacceptable” and “Asking for help makes me a failure”.
  • Catastrophic thinking. This is where you blow up the consequences and believe that if something goes wrong then it will be unmanageable. Some catastrophic thoughts are “If I fail the exam, my life is over” and “If I don’t get it right, I’ll never be able to face my parents”.
  • Probability overestimation. This is where you overestimate the likelihood of bad outcomes. Some thoughts you might have are “Although I revised for the exam all week, it won’t be enough”, and “There’s no point in entering the competition, because I’d never win”.
  • Should statements. This is where you put yourself under a tyranny of rules. These are rigid, and do not adapt or relax when under times of pressure. Some thoughts you might have are “I should always be polite”, and “I should always foresee potential problems”.

 

Some ways to enhance mental flexibility

  1. Develop self-awareness

Notice when you are falling into these thinking habits and pushing yourself too hard. Some useful questions to ask yourself are:

  • Am I feeling more irritable or distracted than usual?
  • Am I showing any physical signs of stress – am I more tired than usual, or struggling with sleep?
  • Is anyone else telling me that I’m pushing myself too hard to meet these standards?

It may be useful to keep a brief diary. Write down the events of the day, your thoughts/interpretations of these, and how you feel emotionally at the end of the day. This will help you understand your own patterns of behaviour, how you interpret events and how this effects you emotionally. For example:

Event Thoughts/interpretations Emotions
Passed exam, but with a lower grade than predicted

 

I should have seen this coming. That module was tough and I’m just not up to it. I’ll have to work twice as hard next time, if I want to stand any chance of having a successful future. Worried, embarrassed, downhearted.
Saw Mary, went for a drink It was great to catch up, it’s been too long. Sounds like she’s doing really well. Had forgotten some of those times we chatted about! Happy, hopeful.

 

  1. Do something to lift your mood

Negative emotions narrow the focus of our attention (Fredrickson and Joiner, 2002). This means that we are more likely to get stuck thinking about our problems, and lose sight of the bigger picture. By contrast, positive emotions can open the scope of our attention. They help us to think more broadly and to find different ways of looking at our situation. Perfectionistic thinking is closely linked with negative emotion: it is unrelenting and demanding, and rarely helps us to feel good. A good first step in tackling this can be to do something that makes you feel more positive. This might be doing something you enjoy, like seeing friends or going to a film or something active, like exercise. You might also want to engage in the Broad-Minded Affective Coping Procedure (BMAC), a therapeutic exercise designed to boost mood (for an example of this see https://www.youtube.com/watch?v=RXLhtkHck78 ). The key thing is to do something that will give you a quick lift, as this will help you to think of things that can help you and implement change in the longer run.

 

  1. Set yourself some new, realistic and flexible standards

It can be useful to write yourself a new list of standards and statements, and to read these when you know you are pushing yourself too hard. Some examples of these are:

  • It’s not possible to be perfect all the time, and that’s ok
  • My own wellbeing is more important than my achievements
  • It’s ok to say the wrong thing sometimes, I’m only human
  • It’s not possible to be in a good mood all the time
  • I can only do my best, I can’t control all possible outcomes

 

  1. Think about your fears from someone else’s perspective

Confide your worries and fears to close friends or family who care about you and whose opinions you find helpful. Later on, when you are stressed and you think you may be pushing yourself too hard, you can then draw on these conversations in your mind. Think back to them and try and see your current situation from their perspectives. Ask yourself questions like:

  • If I told [friend or family member] how I had failed to achieve my usual standard, what would they say?
  • What advice would [friend or family member] give me about my current worry?
  • What advice would I give [friend or family member] if they had this same problem?

 

  1. Test your fears

Sometimes we need to change how we behave to change our thinking. In particular, it can be useful to challenge our fears in small ways. For example:

  • If you insist on always being early, try arriving at an event 10 minutes late.
  • If you hold very standards about your appearance, wear something that is old, creased or has a stain on it.
  • If have a very strict exercise regime, try doing no exercise for a week
  • If you have very high standards for how you behave socially, try saying something you would normally not allow yourself to do so

Before you test out your fear, write down a list of what you are worried will happen. What do you think will go wrong as a result? Then rate each fear on i) how likely you think it is to happen (from 0 [not at all likely]-100 [will definitely happen]) and ii) how bad the impact will be (from 0 [I’ll barely notice it] to 100 [it will affect every area of my life for good]). After you’ve completed the test, read your list of fears. Did they happen? For those that happened, how bad was the outcome in reality? Rate it again from 0-100. Compare your ‘before’ and ‘after’ lists. For example:

 

First list (before the test)

Feared event What I’m worried will happen How likely is it to happen? How bad will the impact be?
Wearing clothes with a mark on Other people will notice 100% 70%
  Other people will judge me, and give me funny looks 100% 80%
  I’ll be so embarrassed I’ll go bright red 100% 90%
  I won’t be able to think straight and get my words out 90% 100%
  I won’t be able to face them again 80% 100%

 

Second list (after the test)

Feared event What was worried would happen To what extend did this happen? How bad will the impact be?
Wearing clothes with a mark on Other people would notice 20% 0%
  Other people would judge me, and give me funny looks 0% 0%
  I’d be so embarrassed I’d go bright red 60% 20%
  I wouldn’t be able to think straight and get my words out 20% 40%
  I wouldn’t be able to face them again 0% 0%

 

When we do this we often realise how bad our fears were before we started. Afterwards, even though we may still be afraid of reducing our high standards, we see how that fear has been reduced. In CBT, we call this a ‘behavioural experiment’. For a video example of one of these in a therapy setting, please see: https://www.youtube.com/watch?v=ExNs8o8A4fI

Evidence for reducing perfectionism and enhancing flexibility

Enhancing flexible thinking is a key feature of most cognitive-behavioural interventions, but recent years have seen the development of some interventions focused specifically on developing this. There is now a strong body of evidence to suggest that these interventions are both successful in reducing perfectionism, and also in boosting overall mental wellbeing. A recent meta-analysis and systematic review identified 8 studies that had investigated this and reported a large-effect sizes for studies reducing perfectionism, and found evidence that these interventions also reduce anxiety and depression in participants (Lloyd et al., 2015).

 

FREDRICKSON, B. L. & JOINER, T. 2002. Positive emotions trigger upward spirals toward emotional well-being. Psychological Science, 13, 172-175.

HEWITT, P. L. & FLETT, G. L. 1991. Perfectionism in the self and social contexts: Conceptualization, assessment, and association with psychopathology. Journal of Personality and Social Psychology, 60, 456-470.

JOHNSON, J., WOOD, A. M., GOODING, P., TAYLOR, P. J. & TARRIER, N. 2011. Resilience to suicidality: The buffering hypothesis. Clinical Psychology Review, 31, 563-591.

LLOYD, S., SCHMIDT, U., KHONDOKER, M. & TCHANTURIA, K. 2015. Can psychological interventions reduce perfectionism? A systematic review and meta-analysis. Behavioural and cognitive psychotherapy, 43, 705-731.

For more information on some of these techniques and other ideas for overcoming perfectionism, see https://www.anxietybc.com/adults/how-overcome-perfectionism

 

This blog post was first published on 24th November 2016 at  https://www.psychreg.org/enhancing-self-esteem/

What is resilience?

As discussed in an earlier post, there are a number of definitions of resilience, but it’s generally used to describe an ability that some people demonstrate to withstand the negative impact of stress. These are the people who keep their cool and keep going in the face of problems. They don’t show undue distress, act out, or give up.

Is it possible to build or increase your levels of resilience?

There’s a common misperception that resilience is a rare quality, held by the special few. This is simply inaccurate. Life is full of decisions, choices and challenges, and we all need some level of resilience to get us through. However, it’s clear that some people have a higher threshold for managing stress than others. In the past it was often believed that these kinds of abilities were part of our genetic make up: either you had them or you didn’t. This view is now rapidly changing. An ever-growing body of psychological research shows that we can change the way we think and see the world, and we can build those factors that make us more resilient.

So… which factors in particular make us more resilient?

Together with my colleagues, I have undertaken a number of studies into the factors that confer resilience. This has included two large review papers. In the past, resilience research has often confused the concept of resilience with wellbeing, suggesting that people with high wellbeing must be resilient. However, it’s possible that people who are high on wellbeing are simply low on stress. To properly understand resilience, we need to go beyond this. We need to group people depending on whether they are i) under high or low stress and ii) maintaining or not maintaining their wellbeing (see Figure 1). When we do this, we can identify those people who are coping well with stress, and find out what it is about them that helps them to do this. It is this approach that my work has taken.  

building self esteem1

Our work has suggested that higher self-esteem, more flexible thinking and higher self-confidence confer resilience. These factors are often targeted by psychological therapy. In particular, techniques included as part of cognitive-behaviour therapy (CBT) aim to enhance or increase these beliefs and abilities. Interventions to enhance these abilities hasn’t just been limited to people with diagnosed mental health problems though: studies in groups of young people and workers in high-stress environments have also focused on enhancing these factors (Morton and Montgomery, 2013, Lin et al., 2004).

In this post, we’re going to look at two ways to enhance self-esteem using psychological techniques. These interventions are brief, so they can be used in workshop and training sessions, and research suggests they work. We’ll outline the background and process to these techniques before providing some evidence for their effectiveness.

  1. Self-affirmation techniques

Background

Self-affirmation theory is a social psychological theory. It views people as story tellers who have a powerful need to tell a coherent and continuous story about themselves as people who are able to control important and moral outcomes in their lives (Cohen and Sherman, 2014). In other words, self-affirmation theory suggests we have a strong need to see ourselves as being a ‘good person’. Events which threaten this story are perceived as threats which cause upset and distress. According to self-affirmation theory, these events need not be big, like a job loss or marriage breakdown. Our need to maintain a sense of ourselves as essentially ‘good’ is so strong that it means that even mundane events can be experienced as threatening.

The technique

The good news is that, according to the theory, we don’t need to see ourselves as ‘wonderful’ or ‘excellent’ to be happier: we just need to see ourselves as being adequate. However, if we are experiencing more challenging threats than usual, we can sometimes need help to restore and strengthen our story of ourselves as a being a ‘good person’. The most commonly used self-affirmation technique to achieve this is to write a list of core personal values. Once written, people choose one value that is particularly important to them (Cohen and Sherman, 2014). They then write about why the value is important to them, and describe a time when the value was important. People often write about relationships with family or friends, religion, kindness or humour. The idea behind this is that it reminds people of the fundamentals of their story and enables them to strengthen their personal narrative around this. An excerpt from Cohen and Sherman (2014) provides an example of what one college student wrote during the exercise:

“My relationship with my family is very important to me because it is my parents and brother who helped push me to be who I am today. Without them, I probably wouldn’t have the patience and motivation to have applied for this university and be successful here. Whenever I have a problem, it is my family I can go to to help me through it.”

The evidence

A large body of research suggests that self-affirmation interventions help people to deal more effectively with stressful events. People who use them demonstrate less of a physical reaction to stress (Creswell et al., 2005), are more likely to take positive action when told they have a health problem (Epton et al., 2015), and even gain higher academic grades (Cohen and Sherman, 2014). Why? Well, the theory states that performing self-affirmations helps to build a person’s self-esteem. Strengthened in their personal story, and in their sense of who they are as a good and valuable person, they are less vulnerable to events or information that could threaten this. This explanation has been supported by evidence that people high in trait self-esteem who perform self-affirmations are those who cope best with stress (Creswell et al., 2005).

  1. Tarrier’s (2001) Cognitive-behavioural technique

Background

Cognitive-behaviour therapy (CBT) suggests that poor mental wellbeing can result from negative underlying beliefs. We can have these beliefs for sometime without being fully aware of them, but when we come across a ‘trigger’ event, they can lead to vicious cycles of negative thoughts, emotions and behavours (Figure 2). For example, we may have an underlying belief that we are worthless, but for as long as we are employed, this belief is kept at bay. However, when we find ourselves made redundant from our job, this belief is activated, leading to negative thoughts such as “I knew this would happen, I could never hold onto a job” and “I’ll never another job, no other firm would employ me”. These thoughts can lead to sad emotions and a lack of motivation, which can then contribute to decisions to become less active, to disengage from friends and to stop applying for jobs.

build self-esteem

The technique

The good news is that if negative beliefs can bring us down emotionally, then CBT suggests that more positive beliefs can boost us, and this is the principle underlying Tarrier’s (2001) self-esteem building technique. In this technique, people are asked to generate a list of positive self-qualities or statements that they think describe them. The idea is that these will be generated over 5 sessions at a rate of 2 per session (10 in total) but this number can be adapted to suit the setting and format of the intervention. For each positive quality that has been suggested, people are then asked to list as many examples of themselves demonstrating this quality as they can think of. As far as is possible, these examples should be based in their own personal memories, and should be described in a good level of detail. Next, participants are asked to mentally rehearse the examples they have described in order to strengthen their access to these memories. Before and after this exercise participants are asked to rate their level of belief in the self-qualities that they have described (on a scale from 0-100). The idea of this is to demonstrate the importance of where our attention lies. In other words, this is done to show that when we think about good things about ourselves, we will believe it more strongly and feel better (Hall and Tarrier, 2003).

The evidence

This technique has now been explored in i) a case study with an older adult suffering from low mood and depression (Chatterton et al., 2007), ii)  a randomised-controlled trial with working age adults with mental health problems, (Hall and Tarrier, 2003) and iii) a group of working age adults with substance misuse problems (Oestrich et al., 2007). In each case, it has been found to be an effective intervention for boosting self-esteem.

Summary

Self-esteem is an important resilience factor, which can help us to maintain positive wellbeing when we are under pressure or stress. Two ways to boost our self-esteem are to remind ourselves of the values that we hold important, and the things about ourselves that are good. There are specific ways of doing this, and research suggests that when undertaken, doing this can help us to maintain a strong sense of self and to build our self-esteem.

Find out more about building resilience in my blog on how to reduce perfectionism.

 

CHATTERTON, L., HALL, P. L. & TARRIER, N. 2007. Cognitive Therapy for Low Self-Esteem in the Treatment of Depression in an Older Adult. Behavioural and Cognitive Psychotherapy, 35, 365-369.

COHEN, G. L. & SHERMAN, D. K. 2014. The psychology of change: Self-affirmation and social psychological intervention. Annual Review of Psychology, 65, 333-371.

CRESWELL, J. D., WELCH, W. T., TAYLOR, S. E., SHERMAN, D. K., GRUENEWALD, T. L. & MANN, T. 2005. Affirmation of personal values buffers neuroendocrine and psychological stress responses. Psychological Science, 16, 846-851.

EPTON, T., HARRIS, P. R., KANE, R., VAN KONINGSBRUGGEN, G. M. & SHEERAN, P. 2015. The impact of self-affirmation on health-behavior change: A meta-analysis. Health Psychology, 34, 187.

HALL, P. L. & TARRIER, N. 2003. The cognitive-behavioural treatment of low self-esteem in psychotic patients: a pilot study. Behaviour research and therapy, 41, 317-332.

LIN, Y.-R., SHIAH, I.-S., CHANG, Y.-C., LAI, T.-J., WANG, K.-Y. & CHOU, K.-R. 2004. Evaluation of an assertiveness training program on nursing and medical students’ assertiveness, self-esteem, and interpersonal communication satisfaction. Nurse education today, 24, 656-665.

MORTON, M. H. & MONTGOMERY, P. 2013. Youth empowerment programs for improving adolescents’ self-efficacy and self-esteem a systematic review. Research on Social Work Practice, 23, 22-33.

OESTRICH, I. H., AUSTIN, S. F., LYKKE, J. & TARRIER, N. 2007. The Feasibility of a Cognitive Behavioural Intervention for Low Self-Esteem within a Dual Diagnosis Inpatient Population. Behavioural and Cognitive Psychotherapy, 35, 403-408.

TARRIER, N. 2001. The use of coping strategies and self-regulation in the treatment of psychosis. In: MORRISON, A. P. (ed.) Casebook of cognitive therapy for psychosis. London: Routledge.

What do we mean when we use the word ‘resilience’?

It’s widely accepted that when we talk about ‘resilience’ or ‘psychological resilience’, we are referring to an ability that some people show to withstand or quickly ‘bounce back’ from stress.

What can research tell us about resilience?

Researchers have been investigating psychological resilience for around 50 years. However, there have been a number of limitations with this research. For example, although we usually talk about psychological resilience as an ability to withstand stress, most researchers have not actually investigated their proposed resilience factors in relation to stress. Instead, they have simply measured their factor directly in relation to an outcome they’re interested in. For example, they have measured perceptions of social support in relation to wellbeing. They have found that high social support is linked with higher wellbeing, like this:

drawing[2]

However, if you think about it, the opposite of perceived social support is loneliness. And in fact, a number of researchers have previously shown us that feelings of loneliness are linked with indicators of poorer wellbeing, like this:

what is resilience 2

As you can see, this kind of ‘resilience’ research is not really telling us anything more than we used to learn from studies of risk factors!

So can resilience research tell us anything new?

Yes. However, we have to research it in the same way that we talk about: we need to study which variables reduce the likelihood that exposure to stressors will lead to negative outcomes. If we draw this out, it would look like this:

what is psychological resilience 3

If we research psychological resilience in this way, it becomes less important whether we use the term ‘high social support’ or ‘loneliness’: what is important is that our social relationships can influence how we will deal with stress. We can say that better social relationships can buffer or attenuate the likelihood that stress will lead to poor wellbeing, or that poorer social relationships harm our capacity for psychological resilience and will make us more vulnerable to poor wellbeing in response to stress.

To provide researchers with a guide for doing this kind of research, and to clarify the criteria that a variable should meet in order to be considered as conferring resilience, I have gathered these ideas together in a framework called ‘The Bi-Dimensional Framework’ (BDF) for resilience research (Johnson, 2016, Johnson et al., 2010a, Johnson et al., 2010b).

What advantages does the BDF offer resilience researchers?

  1. It overcomes the confusion caused by the range of terms that have been used to describe ‘resilience’

There have been a lot of words used in the research literature to describe psychological resilience, these include ‘mental toughness’, and ‘hardiness’, amongst others. This can be confusing. However, the BDF defines psychological resilience according to methodological criteria (i.e., what a variables does, or how it behaves), rather than terminology. It suggests that resilience factors are psychological variables which buffer the association between stress exposure (or exposure to risk factors) and the likelihood of negative outcomes. In particular, the BDF states that for low resilience individuals, there should be a clear increase in negative outcomes in relation to the amount of stress they experience. However, for high resilience individuals, there should be minimal increase in negative outcomes, no matter how much stress they experience. If we were to draw this relationship out, it would look like this:

psychological resilience

  1. It means we can use research to develop increasingly accurate concepts of resilience

In the past it has been common practice to propose a concept of psychological resilience, create a questionnaire to measure this, and then test it in relation to negative outcomes. If it is linked with lower levels of negative outcomes, the researchers conclude that the variable confers resilience. If it doesn’t, the researchers conclude that resilience doesn’t confer resilience in this instance. As outlined above, this doesn’t tell us whether the variable does indeed buffer the impact of stress. However, even more confusingly, how can a ‘resilience’ factor not confer resilience?! If this concept doesn’t confer resilience, then by the very definition of psychological resilience we must conclude that it is not in fact resilience at all. Instead, we could surmise that there are other factors which confer psychological resilience, which are not related to this concept.

This points to a need for concepts of psychological resilience which can be developed and adapted in response to research. As a framework for resilience research, the BDF allows for this kind of growth and development. In particular, it enables the systematic review of individual studies which have investigated factors which buffer the relationship between stress exposure and negative outcomes.

What do these reviews tell us?

Together with my collaborators, I have conducted two systematic reviews of resilience factors using the BDF approach, both of which have been published in a leading psychology journal (Johnson et al., 2016, Johnson et al., 2011). The first of these investigated psychological variables which buffer the relationship between exposure to any risk factor and suicidal thoughts. This suggested that hope, flexible thinking, self-confidence and a good way of looking at events conferred psychological resilience (Johnson et al., 2011). The second investigated psychological variables which buffer the relationship between exposure to failure experiences and psychological distress. This found that mental flexibility, higher self-esteem and a positive way of explaining events confer resilience to distress in response to failure (Johnson et al., 2016).

Together, these reviews suggest that even if you look at different kinds of negative outcomes, similar variables seem to confer psychological resilience. These variables relate to mental flexibility, self confidence and self-esteem, and a positive way of positive way of explaining events.

Can we train people to be more resilient?

Yes. The factors identified by these reviews (mental flexibility, self-esteem and self confidence and explanatory style) are those which are commonly targeted in cognitive-behaviour therapy, which is an evidence-based form of psychological therapy. CBT was initially developed as an intervention for people with mental health problems, but has since been found to be effective for improving mental wellbeing in a range of populations. With a collaborator in Australia, Dr Reema Harrison, I have been developing an intervention plan for training medical students in resilience which draws on CBT. This intervention is designed to train participants in resilience through three 60-minute workshops based on the principles of cognitive-behaviour therapy. These workshops will involve psychoeducation, experiential exercises and group work. We will be piloting this in Sydney in January 2017, and plan to then test this in subsequent research studies in different populations.

For more information on how to build psychological resilience, please see my blogs on enhancing self-esteem and reducing perfectionism.

References

JOHNSON, J. 2016. Resilience: The Bi-dimensional Framework. . In: WOOD, A. M. & JOHNSON, J. (eds.) Positive Clinical Psychology. Chichester: Wiley.

JOHNSON, J., GOODING, P. A., WOOD, A. M. & TARRIER, N. 2010a. Resilience as positive coping appraisals: Testing the schematic appraisals model of suicide (SAMS). Behaviour Research and Therapy, 48, 179-186.

JOHNSON, J., GOODING, P. A., WOOD, A. M., TAYLOR, P. J., PRATT, D. & TARRIER, N. 2010b. Resilience to suicidal ideation in psychosis: Positive self-appraisals buffer the impact of hopelessness. Behaviour Research and Therapy, 48, 883-889.

JOHNSON, J., PANAGIOTI, M., RAMSEY, L., BASS, J. & HARRISON, R. 2016. Resilience to emotional dysfunction in response to failure or error: A systematic review. Clinical Psychology Review, In press.

JOHNSON, J., WOOD, A. M., GOODING, P., TAYLOR, P. J. & TARRIER, N. 2011. Resilience to suicidality: The buffering hypothesis. Clinical Psychology Review, 31, 563-591.

Originally published 23rd Nov 2016 at https://www.psychreg.org/building-psychological-resilience/

What is dysmelia?

Dysmelia is a group of rare diseases involving  limb differences. Rare diseases are those which affect less than 1 in 2000 people, but around 8000 rare diseases exist altogether and over 50 million people in the USA and Europe are affected.

Several rare diseases including dysmelia are diagnosed during pregnancy or shortly after birth. If  diagnosed during pregnancy, parents may need to make important decisions around whether to undergo invasive testing or to receive a termination. In dysmelia, termination rates vary between 20% and 50%. If identified after birth, parents will need rapid access to information and support, to help them care for a baby with a disability. However, little is known about the experiences of parents and how they could be better supported at this time.

Our research

We undertook research into the experiences of parents when their baby was diagnosed with dysmelia (for the full paper, see here). We distributed two surveys online, which were responded to by parents from across the globe. The first survey was completed by 417 parents, and the second survey was completed by 130 parents.

What we found

Results from the surveys indicated that a third of parents received a diagnosis of dysmelia before birth, and two thirds received the diagnosis after their baby was born. On average, parents were less than satisfied with the care that they received (average score of 2.6 on a scale from 1 to 5, where 1 was ‘very dissatisfied’ and 5 was ‘very satisfied’; see Figure 1).

Figure 1

Figure 1. How satisfied parents were with the care they received when their baby was diagnosed with a limb difference.

Only a quarter of parents were given information about organisations they could contact for support (Figure 2), and parents based in Europe were twice as likely to be given this information as parents living elsewhere. This was particularly striking when compared to our finding that over 90% of parents said they would have wanted this information.

Figure-21.jpg

Figure 2. The percentage of parents who received information about organisations they could contact for information and support regarding limb differences.

What parents want

When asked about the information and support they would have liked to receive, 46% of parents said they would have liked information about raising a child with a limb difference and 51% would have liked information about specialist treatment. In terms of support from professionals, 41% would have liked to be referred to a psychologist, and 39% would have liked to speak to a hand/foot surgeon.

One simple improvement healthcare professionals can make

These findings suggest there is a strong need to improve the healthcare provided to parents when their baby is diagnosed with a limb difference. One clear and simple improvement could be to provide information about organisations that parents can contact for support. These findings may also be relevant for other rare diseases which are often identified during pregnancy or shortly after birth.

[Authored by Olivia Johnson, Alice Dunning and Judith Johnson]

Healthcare research can feel out of touch and out of step with clinical demands and priorities. It’s usually a slow process, often riddled with delays, and it may not address the immediate questions healthcare staff are asking.

As healthcare researchers, we have been challenged about the point and purpose of our work. After all, we’ve been asked, doesn’t research usually just confirm what we know by common sense, anyway? Aren’t the true advances in healthcare made through common sense clinical observations and logical assumption? Here, we present four reasons why healthcare research is needed (or, four ways that common sense has not been enough).

1. Widely practised treatments based on common sense clinical knowledge have been found to be ineffective (or harmful) when tested by research.

One clear example of this is the use of oxygen therapy as emergency treatment following a heart attack. For over 100 years this was considered common sense and routine, based on knowledge that the blocked artery would prevent oxygen from reaching the heart. However, in 2009 a review of research studies testing this intervention reported counterintuitive results [1]. Rather than compensating for the lack of oxygen to the heart, the review found that oxygen treatment increased, rather than decreased, the size of the area affected by lack of oxygen. These studies have started to raise debate about the guidelines for emergency oxygen treatment, challenging standard healthcare practices and moving this field forwards [2].

Reaching back further in time, in the middle of the 20th Century, we can find a similar example of counterintuitive research results in the work of Ignacio Ponseti. Ponseti was an Orthopaedic Surgeon who began researching Club Foot, a condition where one or both of a child’s feet are turned inwards and downwards. At the time, based on clinical knowledge and common sense, it was widely assumed that Club Foot should be treated surgically [3]. Ponseti, however, began to recall individuals who had had this surgical treatment twenty years later. Contrary to expectation, his research found that many of these patients were suffering from rigid, weak feet [3]. Ponseti delved into the research literature for answers, drawing on papers published as far back as 1872 [4] to develop a treatment based primarily on plaster casts [5]. His results were impressive, suggesting that 71% of feet treated with his method showed a good outcome 5-12 years later [3]. The downside was that his procedure was slow, involving phased treatment that lasted months. It felt counter-intuitive and undesirable compared to a surgical intervention which had much quicker results. Because of this, Ponseti’s approach was regarded as outlandish, and for years many people viewed him as crazy [6].  It wasn’t until the 1990s, when he had produced further promising research results and word began to spread, that his evidence-based approach became the ‘norm’.

A more current example like this comes from the field of miscarriage research [7]. Based on knowledge that the hormone progesterone is key to maintaining a healthy pregnancy, a common sense treatment for women at risk of miscarriage has been to prescribe progesterone supplements after a positive pregnancy test result. However, when it was put to the test in a large-scale study last year, this treatment was not found to be effective. Contrary to expectations, women prescribed progesterone supplements had almost exactly the same risk of miscarriage as women prescribed a placebo version of the hormone [7]. In the absence of promising new interventions for miscarriage, this result was disappointing to the many couples affected by this problem. On the other hand, it could be the evidence that researchers need to spur them on to find new answers. Let’s watch this space!

2. Healthcare research has proved that interventions that are intuitively bizarre can in fact be helpful.

Sometimes the strangest things can help, and without research, it’s hard to see how these kind of treatments would have come to light. One example comes from research into IVF (in-vitro fertilisation), where success rates continue to be disappointingly low. However, recent hope has come from a treatment known as the “endometrial scratch”. As it sounds, this is literally where the inside of a woman’s uterus is scratched prior to undergoing IVF. Although strange sounding, evidence that this may be beneficial first came from research in guinea pigs in 1907 [8]. In the past decade studies have begun to explore this treatment for boosting IVF success rates in humans. When reviewing these studies together, a recently published paper concluded that the endometrial scratch improves IVF success rates in women who have undergone previously failed attempts, who might otherwise have low chances of success [8].

Other counterintuitive treatments have come from research into physical health symptoms which cannot be explained medically. You may initially think that these problems must be rare, and that physical health problems on the whole require a medical intervention targeting the body. However, research has told us that around half of patients seen by hospital doctors may be affected by medically unexplained symptoms [9]. Armed with this knowledge, psychologists theorised that these symptoms may be psychologically influenced, and developed psychotherapeutic treatments to address them. Research testing these treatments has been promising, and a recent review of these studies found that in all cases, psychological therapy reduced the severity of medically unexplained symptoms [10].

3. What common sense would suggest is a problem, isn’t always a problem

In healthcare, it can sometimes seem that there are a lot of things that need improving. Research can just be an added burden to this, an extra job on top of the normal clinical caseload. However, sometimes research can help reduce that to-do list, showing us that some things may be fine left unchanged.

A great example of this is research into interruptions on wards. The conventional view has long held that distractions and interruptions are a threat to patient safety. They take attention away from the task in hand and break clinicians’ concentration. However, research suggests that the real picture isn’t nearly so clear. Whilst interruptions in surgical settings have been linked with deteriorations in patient safety [11], research in ward settings has highlighted the benefits of being interrupted. For example, one study found that interruptions provided important information for staff, with 11% of them communicating knowledge that improved patient safety [12]. Other research has found that interruptions may help staff to stay alert by keeping them in a heightened state of arousal and eliminating boredom [12].

Taken together, these studies oppose the common-sense view that interruptions should be eliminated in ward settings and suggest that distractions are not always dangerous. Indeed, interruptions can keep clinicians alert and informed in some settings, and efforts to remove and reduce them could have unexpected consequences. Good news for clinicians – this is one thing that can be left unchanged!

4. What is common sense to clinicians isn’t always common sense to other people, and research evidence can lead to shared knowledge.

Part of our own research focuses on healthcare staff burnout, and we have found evidence suggesting that when staff are burnt out, safety and quality of patient care suffers [13]. In our discussions with healthcare staff we have been told that our research is obvious, common sense, and common knowledge. After all, anyone working on a ward can see that this is the case. However, gathering data demonstrating this link can help to explain and describe it to the public and policy makers, who may not fully understand the daily challenges of healthcare work. Conducting this kind of research can begin to quantify this association. For example, if a nurse is suffering from moderate burnout due to difficult working conditions, just how much is the quality of the care they can provide likely to suffer? We don’t have the answer to that one yet, but it’s these kind of questions we are keen to answer. We may be stating the obvious, but what seems obvious to you or me may not be so clear to everyone else.

So where now?

It seems pretty clear to us that research is necessary. It overturns false assumptions, finds strange new answers to problems, can help clinicians focus on the most pressing problems, and can justify the resources that clinicians need.

On the other hand, we are under no false illusions that the research process is perfect as it is. It can take years to secure funding for a project that is clearly needed, years more to undertake that project, and months more again until that research may be published and publicised. In the worst cases, by the time funding has been secured for a project, the landscape of the NHS has changed to such an extent that the project needs to be overturned entirely.

A need to improve the peer-review process

It seems to us that there is one clear place these time lines could be sped up: the peer-review process. Peer review is where grants and papers are critiqued by other researchers, and it can often take several months. The reason for this? Generally speaking, reviewers are not paid, and they provide these reviews anonymously. So highly qualified, busy professionals are expected to do this in their spare time, for virtually no personal gain whatsoever. In a pressurised work environment, this crucial work falls to the bottom of a long to-do list. To us, one obvious improvement could be to start incentivising reviewers. We’re seeing steps towards this with initiatives such as offering reviewers credits (reviewercredits.com; @reviewercredits), but more is needed here. There need to be tangible rewards for reviewing that will motivate reviewers to prioritise this task.

Time to build bridges

We also think there is clear potential for researchers and clinicians to work more closely together. Researchers may have research expertise, but they need the hands-on knowledge of clinicians to know where to apply this. On the other hand, clinicians may have the best ideas, but they need to reach out to researchers to help develop that all-importance evidence base.

References

  1. Wijesinghe, M., Perrin, K., Ranchord, A., Simmonds, M., Weatherall, M., & Beasley, R. (2009). Routine use of oxygen in the treatment of myocardial infarction: systematic review. Heart, 95(3), 198-202.
  2. http://www.clinmed.rcpjournal.org/content/11/6/628.2.full
  3. Brand, R. A. (2009). Clubfoot: Etiology and Treatment Ignacio V. Ponseti, MD, 1914–. Clinical orthopaedics and related research, 467(5), 1121-1123.
  4. Dobbs, M. B., Morcuende, J. A., Gurnett, C. A., & Ponseti, I. V. (2000). Treatment of idiopathic clubfoot: an historical review. Iowa orthopaedic journal, 20, 59-64.
  5. Ponseti, I. V., & Smoley, E. N. (1963). Congenital club foot: the results of treatment. J Bone Joint Surg Am, 45(2), 261-344.
  6. http://www.bbc.co.uk/programmes/b06zs22x
  7. Coomarasamy, A., Williams, H., Truchanowicz, E., Seed, P. T., Small, R., Quenby, S., … & Bloemenkamp, K. W. (2015). A randomized trial of progesterone in women with recurrent miscarriages. New England Journal of Medicine, 373(22), 2141-2148.
  8. Ko, J. K. Y., & Ng, E. H. Y. (2016). Scratching and IVF: any role?. Current Opinion in Obstetrics and Gynecology, 28(3), 178-183.
  9. Nimnuan, C., Hotopf, M., & Wessely, S. (2001). Medically unexplained symptoms: an epidemiological study in seven specialities. Journal of psychosomatic research, 51(1), 361-367.
  10. van Dessel, N., Den Boeft, M., van der Wouden, J. C., Kleinstäuber, M., Leone, S. S., Terluin, B., … & van Marwijk, H. W. (2015). Non-pharmacological interventions for somatoform disorders and medically unexplained physical symptoms (MUPS) in adults, a Cochrane systematic review. J. Psychosom. Res, 78(628), 10-1016.
  11. Sevdalis, N., Undre, S., McDermott, J., Giddie, J., Diner, L., & Smith, G. (2014). Impact of intraoperative distractions on patient safety: a prospective descriptive study using validated instruments. World journal of surgery, 38(4), 751-758.
  12. Sasangohar, F., Donmez, B., Trbovich, P., & Easty, A. C. (2012, September). Not all interruptions are created equal: positive interruptions in healthcare. In Proceedings of the Human Factors and Ergonomics Society Annual Meeting (Vol. 56, No. 1, pp. 824-828). SAGE Publications.
  13. Hall, L. H., Johnson, J., Watt, I., Tsipa, A., & O’Connor, D. B. (2016). Healthcare Staff Wellbeing, Burnout, and Patient Safety: A Systematic Review. PloS One, 11(7), e0159015.

This article was originally published on 31st August 2016 on healthprofessionalofinfluence.com (a now inactive website).