A Research Paper By Nadezda Nedospasova, Care & Resilience Coach, LATVIA
Health Care & Disability
The theme of this research came from my decision to transform my professional career as a caregiver into a coaching career becoming a Care & Resilience Coach – the one who can give a voice to both care users and caregivers. My vast personal and professional experience in care has taught me that living with limited ability due to any predicament is not only confronting and backbreaking for those going through it, but it’s also difficult for all of those around them. Although life around disability as well as life with a disability is still life that one can make the most of.
I started my coaching journey with a particular goal in mind: to help people living around and with disability giving them support in finding new ways to happiness in their life, relationships, and work. To discover their true potential by getting support to optimize their partnership and achieve new goals in a highly challenging environment. To broaden their perspectives by being heard and seen on their daily journey doing their best. Because in our world those who live around and with disability are still not getting sufficient support and their voice still needs more power.
Here I will explain deeper the significance of my choice to develop coaching support for people with disability and caregivers through exploring the actual situation based on my personal experience built up from working as a personal carer for more than 15 years with more than 30 individuals with various types of disability, as well as looking into the data from official published sources including statistical information. Although I am using the data from the UK and American sources, the research results can be related to those European countries where the Health Care system works in a similar way, in addition to Australia.
Meanwhile, care users in their daily demanding lives face such difficulties as
- processing of grief, anger, and acceptance,
- feelings of dependency and loss of autonomy,
- thinking they’ve become a burden to people around them, believing that their closest ones would be better off without them,
- experiencing a newly negative self-image, a loss of self-esteem, a fear of neglect,
- feeling the embarrassment and even shame about their new physical changes,
caregivers have difficulties of their own which demand a great deal from them – often far too much to try to deal with alone as it can eventually cause burnout.
In order to see the bigger picture here is some statistical data.
According to the World Health Organization (WHO), over 1 billion people live with some form of disability, which corresponds to about 15% of the world´s population. According to the UK statistical data in the Family Resources Survey: the financial year 2019 to 2020, commissioned by the UK Department for Work & Pensions, there are 14.1 million disabled people in Britain–8% of children, 19% of working age adults and 46% of pensionable age adults. The same statistical source states that there are 4.5 million informal carers in the UK.
And the number of people with disability is dramatically increasing. Additionally, when people with disability access health care, they often experience barriers, stigma, and discrimination, and receive poor quality services.
Considering the figures above, it would seem logical to suppose that the coaching industry services are playing a big part in the disabled community life. But my own experience has no evidence of anyone with a disability, as well as the caregivers, who had been offered coaching services. Interestingly, coaching mostly refers to sports activities for physically challenged people whilst completely missing out on such coaching options as the promotion of mental and emotional health.
The Health Care System offers a whole range of other high-quality services such as medical and physical therapies, rehabilitation, speech, and occupational therapies, additional education, psychological consultations, and counseling. All of these services, whilst unequivocally important and necessary, are designed to help in returning the person with a disability to the best possible level of functional ability according to the established health Care System recovery plan. The problem here is that the treatment leaves no room for prioritizing the individual´s personal dreams or goals, paying attention to the struggles with their new identity, or working on their determination to a new life sense and purpose. Following strict discipline and rehabilitation protocols makes the “patient” completely dependent on the decisions made by others for the aim of body recovery. And these circumstances create the same limitations for caregivers as the physical health of the “patient” is the top priority, meanwhile, both parties overlook the care of the Inner Self and of other needs aligned with the core values. The WHO data shows that people with disability are rarely asked for their opinion or involved in decision-making about the provision of health services to them.
For illustrative purposes of the previously mentioned idea regarding limitations in the care system and overlooking the core, needs suggest using the Wheel of Life, which clearly shows all major life aspects along with the concept of the interconnection and importance of nurturing and developing of all segments for living a balanced life.
Conclusively, physical health as the top priority can and should also come along with the ability to care for the Inner Self, create new meanings and purposes, make one´s own choices, pursue new goals, gain control of life, develop motivation and assertiveness, growing resilience, therefore improving the quality of life.
As a coach, I believe there is great potential for a positive impact once the coaching is widely available to disabled individuals and caregivers. Unfortunately, there is no fundamental research to be found on this topic, although there are other online resources that provide clarity that the power of life coaching can be an ultimate game-changer for those who live with and around disability. One of these resources– a non-profit organization in the USA at www.facingdisability.com – apart from loads of extensive information, useful to anyone facing disability one way or another, contains numerous videos of interviews with disabled individuals, where they answer various questions revealing some challenging aspects of their lives. This inspired me to interview a friend in order to explore the potential value that coaching might bring into his life.
Coaching in Health Care & Disability Interview
So let me introduce to you Steven Strange, a friend of mine, who kindly agreed to give me an interview on the condition of changing his name and some personal details which I did. Steven is a 55-year-old British gentleman who became quadriplegic after a car accident back in 2015. He lives with his wife and alive-in carer in an adapted house in the suburbs of Brighton, in the UK. I asked Steven some questions about his experiences since he began his challenging journey with his disability and also invited him to share his thoughts on what support he would have required.
So Steven, maybe you know that there are some disputes on the language used in terms of speaking about disability and my first question is about your thoughts on the difference between being called disabled and physically challenged or differently abled and if there is any difference for you at all?
- For me being called “disabled” is what I’ve been used to since my accident seven years ago and to change it to some other term is neither a good nor a bad thing. Disabilities come in many forms and I think changing them is unnecessary. After all, I have a disabled badge for parking not a physically challenged badge and things could get out of control. Short people are physically challenged in many walks of life for example. For me, there is no difference, but “disabled” is just easier on the tongue.
What do you wish you had known at the beginning?
- I wish someone had told me honestly exactly what had happened and how much my life would change. In the first two years, I discovered that this was normal practice, and getting information was extremely difficult. I know my family also faced a serious lack of information and for that reason, there were lots of unnecessary decisions made in terms of getting a second opinion and choosing the right timing for all possible treatments.
How did you deal with stress at first?
- At first, I thought this was all some kind of dream but as time went on it became obvious that I was not going to get up by myself. I believe I chose to bury the stress inside my body and let my body deal with it. Frankly, now I realize that I needed a psychological therapy course to help me from day one.
What was the beginning of your story of living with disability in terms of available health care services?
- As I remember the health care services available to me were very limited and in most cases a complete waste of time. I mean that I had the necessary basic treatments but along with that were coming lots of “ticking the box” procedures which were accorded rather with the existing protocols than my actual circumstances and needs. This all made me feel like I was a workstation and not a human being with my own individual requirements. And also regarding psychological help, I received just a short formal counseling course in the form of only three one-on-one visits which changed absolutely nothing for me.
What other health care services would you wish you had access to in the beginning and now?
- I definitely missed out on proper rehabilitation and adequate psychological support in the community after being discharged from the hospital. After all, I ended up looking on my own for all that and I must say that there are not many specialists who can deal with the disabled and offer them tailored therapy for their individual needs. Also, I really could have done with someone to guide me on as many information services and charities as possible so I´d know what are the real options for me available out there, in my new life. Instead, all the useful sources I´ve run across throughout all these years were found by accident. I´m sure there are many more which I haven´t come across yet and I wish some sort of an expert could be found for such advice to save my time and effort.
What was the hardest part of rehabilitation?
- To be honest I’ve had rather exciting milestone moments but I think the hardest part of my rehab was trying to keep going and not throw in the towel. Throughout that time I suffered from a lot of pain in my arms and practically lived on the strongest painkillers. Another difficulty came from the fact that sometimes I was offered useless rehab props which would have been better used by others I´m sure. I believe some sort of a rehab coach would do a great job in my case making my journey more rewarding and pleasurable to get where I am now.
I know that your carer lives with you in your house. What’s the best way you found to work with a caregiver?
- Throughout my entire life, I’ve always believed in treating everyone in exactly the same way as I would want to be treated. I’m always polite and respectful and I always try not to constantly keep asking them to do things for me and to try and live my own life. But of course, it´s rather challenging to live with a stranger under the same roof and to be their sort of a workstation having no privacy – some of my carers have a great personality and we´ve become good friends in time, but if that’s not the case then this turns into a really challenging side of being heavily dependent on the service.
What’s important for family and friends to understand?
- I believe it’s important for family and friends to understand that despite being disabled, I do have the same requirements when it comes to wanting to live an independent life as anyone else.
What is your experience regarding potential limitations to your adaptation within society?
- Well, I don’t work so there is nothing I can tell you on that part. But wherever I go in public I have always received friendly attention and respect from people. The only thing that rather makes me feel awkward is that people often address my carer or friend when actually it was me sitting in my wheelchair alongside them who asked the question or needed assistance. I know a few people with severe disabilities who have shared the same observations, seems like sometimes people just avoid direct contact with the person in the wheelchair and that makes them look ignorant. Quite an unpleasant feeling to be honest.
What did serve you really well throughout the years of adapting to your new life?
- First of all, I must mention the good carers who do care for me – it´s a rare thing unfortunately but I have been truly lucky with a few gems. I fully understand that carers should be rated but this again turns into a tick-box exercise and does not differentiate between those who really care and have a genuine passion for looking after others and those who obviously chose the wrong profession for themselves. Alsobeingof good use to me were the insights I´ve discovered when coming across relevant books, films, and articles, as well as getting private physiotherapy and lately coaching.
What do you know about coaching?
- Prior to my accident, I coached friends and family on cycling and running pursuits. Additionally, I used to work voluntarily at a local motorcycle training center and coached people to pass their exams. I think I prefer sports coaching here. But last year I was introduced to another type of coaching which is closer to some sort of supportive therapy. And now I wish I´d known more about it earlier as I believe coaching is working really well with different aspects of life whatever is trying to be accomplished.
How do you see your future?
- I´d say I try not to look into the future too often and to take each day as it comes. Although since I was introduced to coaching I realized that this is something I find myself passionate about and capable of working online in the future as a coach for people like me. I even had an interview with a trainer from one of the teaching course companies and that made me consider such an option quite seriously.
Steven, I´d like to thank you sincerely for taking part in this interview and giving me your permission to include it in my research project. And my last question is this: What piece of advice would you give to others starting their journey through adversity?
- This is difficult as everyone deals with adversity in their own way. I believe that you should get private psychotherapy as soon as possible to help you deal with grief and anger. For instance, I’ve tried to deal with anger by internalizing it and for several years now I’ve had therapy to deal with it. Currently, I think I’m progressing well continuing to have my weekly sessions and exploring many different aspects of my life in addition to my disability which I never realized were relevant. And as an option, I consider coaching to keep up with achieving my new goals through the demands of my daily life.
Understanding Coaching in Health Care & Disability
Meanwhile, there are some groups such as
- Faculty Medical Coaches which provide coaching support and mentoring services for NHS (National Health Service in the UK) professional medical staff,
- British Association of Social Workers (BASW) in 2020launched an important new online Social Work Professional Support Service (PSS) offering essential space and support for social workers to talk and think through issues and address practice concerns of social workers throughout Covid-19 and beyond. BASW offers up to three one-to-one video or telephone confidential and free sessions with a trained volunteer coach,
such organizations are both few and far between in the public arena, which means they are not known well enough. Regarding informal caregivers, the situation is rather more concerning-should they have a need for coaching services the only available option would be for them to search out information on private coaches, having very little understanding of all the available options.
Individuals with a disability face the same situation – whereas there is a possibility to access sports coaching, other types of coaching are poorly represented due to barriers in modern society and the lack of understanding of certain specifics of life with and around disability.
Certainly, nowadays there is still a big gap caused by an insufficient understanding of disability and what impact it has on people´s lives. And for reducing that gap, a prime key factor is collaboration at all levels, starting from the companies developing wider networks and demonstrating their commitment to diversity and inclusion and ending with professionals who can provide the necessary support and contribution of expertise to the disabled community. Thus, my choice of coaching niche and determination of establishing my coaching services business is fully defined by the factual evidence shown in this research.