Learning to Articulate One’s Needs

Articulating one’s needs can be a novel experience, and people can feel uneasy having to verbalise their requests. As a participant in a recent study said, ‘I felt weird telling carers what to do’ (Bourke et al., Reference Bourke, Nunnerley, Sullivan and Derrett2019, p. 260). Learning to articulate my needs involved (a) learning about my new circumstances and (b) being supported in rehabilitation to believe that I was a validated expert on my body. With such knowledge I could then partner with support workers to mitigate potential secondary complications such as pressure areas (through visual skin checks and checking bunched clothing) or chest infections (via assisted coughs and position changes). Partnering with support workers to help maintain good health and minimise the risk of developing secondary complications gives me the capacity to participate in meaningful roles such as engaging with social connections and being productive at work. A particular experience of having to perform an emergency catheter change in my first year after my injury highlights the interaction between my health management (catheter management), activities (driving and eating lunch) and community participation (interacting with the people and places that are important to me).

It was my first day with a new support worker who had no experience of working with someone with tetraplegia. I had arranged to visit a close friend for lunch at his house in a semi-isolated rural location. My new support worker drove me there, assisted with organising a ramp to enter the house, and helped me to set up equipment to eat my lunch. Halfway through our lunch I begin to feel the initial symptoms of a blocked catheter: a worsening headache, clammy skin and goosebumps. These are symptoms of autonomic dysreflexia, a medical emergency characterised by an increasing blood pressure which does not abate until the offending stimulus has been resolved. It can be life-threatening. With my symptoms worsening it soon became apparent that I would need to act immediately to resolve the situation. I informed my support worker of the situation and that we would need to do an emergency catheter change while I was in my wheelchair. I reassured her that I would talk her through every step of the procedure and that there was no reason why we couldn’t complete the task successfully. Together, we positioned my body as best as possible in the wheelchair and organised the equipment ready for a change. Following the steps I had learned during inpatient rehabilitation, we successfully made the change and removed the block, enabling my bladder to drain. My adverse symptoms were resolved.

This example highlights some of the overt conditions necessary for a successful outcome and also some of the more nuanced contextual factors at play. For example, fundamental resources my support worker and I both contributed to the situation included my knowledge of the steps involved in an emergency catheter change, while my support worker was physically able to carry out the procedure. Such an interaction illustrates the difference between decisional autonomy and executional autonomy (Cardol et al., Reference Cardol, De Jong and Ward2002). The former referring to one’s ability to make decisions in one’s life without external restraint or coercion, for example choosing when and what to wear, or choosing how, and with whom, to perform an emergency catheter change. Executional autonomy is dependent on decisional autonomy and refers to the ‘doing’ of the act. However, for many people following impairment, while executional autonomy may not be possible, decisional autonomy can be achieved through utilising an interdependent approach where people work in concert with others.

Humanizing Connections: Familiarity and Rapport

Humanizing the connection with support workers involves looking beyond the transactional nature of the relationship and reflecting on some of the hidden contextual factors that sit behind the functional tasks of a support worker. In my experience I have found that positive support worker relationships are characterised by a sense of reciprocal respect, trust and increased levels of attunement as each person navigates one another’s needs and circumstances. For example, in the anecdote above regarding an emergency catheter change there was a reciprocal notion of trust: myself trusting that my support worker would be able to remain calm and follow my instructions; whilst my support worker was trusting in my expert knowledge of the procedure and circumstances.

Reciprocity is necessary in a successful support worker relationship. A support worker will be aware of my daily routine, be familiar with the specific needs of my condition and most importantly, be attuned to my personal context: my personality, and the needs and privacy of my family. In turn, I do my best to be cognisant of and acknowledge their needs such as their need to take a break and manage their workload. The following anecdote illustrates a specific example of the transactional, and more subtle, factors involved in successful support worker relationship.

Recently, I presented the findings of a research project at a conference in a neighbouring city. Logistically, this involved a 1-h flight, staying away from home for several nights, and a mixture of health, work and social tasks and activities. A support worker travelled with me and helped with a wide variety of my needs including transfers onto the plane, assistance with food and personal cares and assistance with work-related preparation. While I attended other presentations at the conference my support worker took a break so as not to become exhausted or overwhelmed by the workload. While many of the tasks appeared to be transactional at the surface, there were a myriad of subtleties involved in all aspects of the trip. For example, my support worker had to anticipate my needs while also being responsive to spontaneous events that often occur when travelling to a conference. From my perspective I had to anticipate my personal care needs while also acknowledging my support worker’s needs such as their need to take a break and manage their workload. Furthermore, the extended time in each other’s company that inevitably occurs whilst travelling requires a certain degree of trust, respect and familiarity in order for both people in the relationship to respond to their personal needs but also perform their professional duties.

Learning to successfully negotiate both the transactional tasks involved, and importantly, navigate the subtleties, is often a mixture of personalities and time as both people get to know each other and learn how one another other work. Such things are inevitably dependent on the individuals involved. Often, a support worker’s personality and ability to read a situation is more important than the functional skills required of the work, which can often be learnt without prior experience. Indeed, I find that thinking, verbalising and articulating my needs, and indeed just participating and managing a relationship with a support worker, can be draining. For this reason having a team of regular support workers who know my routine and can generally anticipate my needs is beneficial as I do not have to specify and verbalise every detail of what we’re doing. Conversely, having a high turnover of support workers, and having to negotiate new and unfamiliar relationships, requires me to explain all manner of detail about my routine and is exhausting.

However, high levels of familiarity and attunement can be a double-edged sword. On one hand, it allows an ease of communication and understanding of my circumstances and needs. Conversely, overfamiliarity can represent the breaching of boundaries and support workers can risk becoming too personally involved and embedded in your life and family. A certain level of relationship inevitably develops when a regular support worker spends so much time involved in such private aspects of one’s life. The domestic space is loaded with potential tensions as individuals and families adjust to having support workers in their personal and family space. For example, spouses of people with SCI can yearn for the solitude of their pre-injury home and lament the lack of privacy (Dickson et al., Reference Dickson, O’Brian, Ward, Flowers, Allan and O’Carroll2011). As Emma McKinney, whose husband has high level tetraplegia, writes in her articulate autoethnography, ‘At times I wish they (support workers) would disappear so I can have a good argument without watching what I say’ (McKinney, Reference McKinney2018, p. 279).

Lastly, the notions of power and vulnerability are embedded in support worker relationships and each party can experience both concepts. The person with impairment can be vulnerable through requiring the help of another to do the most fundamental tasks, many of which are private and intimate. Without the help of another a person simply cannot get dressed, mobilise from bed or prepare food to eat. The stark reality is the actual survival of a person with impairment depends on another person to assist with such tasks. Unfortunately, this vulnerability can expose people with impairment to abuse and neglect (Ballan & Freyer, Reference Ballan and Freyer2021; Malihi et al., Reference Malihi, Fanslow, Hashemi, Gulliver and McIntosh2021). A support worker can experience vulnerability through having to work within another person’s domestic space, often alone and can be prone to burnout and a lack of organisational support. Conversely the person with the impairment can experience power through asserting control regarding the many decisions in their day-to-day life, while the support worker can experience power through being the one with the capacity to carry out tasks.

Managing power and vulnerability within the support worker relationship is therefore a delicate balance. For the person with impairment, careful consideration is often required regarding how much assistance to request, and the manner in which it is requested, so as not to cause resentment and resistance. This needs to be balanced against the fact that one often requires certain things to be done. In my experience negotiating power and vulnerability requires trust and respect from both parties and any analysis of support worker relationships should consider the influence of these factors. Establishing an effective and respectful relationship with support workers requires all parties to clearly communicate their expectations regarding familiarity (and overfamiliarity) which helps ensure the relationship is kept respectful, effective and professional.

Implications for Rehabilitation

In this article, I have drawn on my personal experience to illustrate the important role of human connections and relationships in enabling interdependence for people who experience impairment. Specifically, I have reflected on how autonomy and self-determination can be achieved and supported through support worker relationships. Indeed, the relationships formed between people who use and provide support services can provide excellent lessons in how interdependence is achieved, and how rehabilitation practice can begin to recognise and value the necessary and important role relationships play in supporting people to live a meaningful life following impairment (Gibson, Reference Gibson2014). Support worker relationships are both functional and professional yet characterised by a number of subtle and complex characteristics not limited to attunement, trust, rapport, respect and power. The calibre of one’s relationship with the support workers can be hugely influential for overall quality of life. To better prepare people to live a meaningful life in the community I feel it is necessary for rehabilitation practice to attend to the more complex areas of support worker relationships – both in the training and education of support workers, but also in preparing people who will require support workers.

There are a number of ways that rehabilitation practice can value relationships which facilitate interdependence, particularly preparing people living with impairment to work with support workers. First, clinicians can aim to empower people to learn as much about their impairments as possible. Enabling people and their families to become experts on their impairments will position them in a better situation to communicate and articulate their needs to others, including support workers (Leplège et al., Reference Leplège, Gzil, Cammelli, Lefeve, Pachoud and Ville2007). Communication has indeed been identified as one of the most important aspects in determining successful support worker relationships by others with the lived experience (Dickson et al., Reference Dickson, O’Brian, Ward, Allan and O’Carroll2010; McKinney, Reference McKinney2018). Rehabilitation clinicians can work with people and their families to practice how to communicate with support workers. For example, this might include practice in establishing expectations surrounding a person’s routine, and negotiating issues that may arise in a person’s day to day life. Second, service providers could better educate people on the complex nature of support worker relationships, beyond the transactional, for example developing rapport with support workers, negotiating boundaries concerning familiarity, trust and learning to have support workers in a personal and family space, topics which have been highlighted in the literature (Bourke et al., Reference Bourke, Nunnerley, Sullivan and Derrett2019; Dickson, O’Brian, Ward, Allan, & O’Carroll, Reference Dickson, O’Brian, Ward, Allan and O’Carroll2010; Dickson et al., Reference Dickson, O’Brian, Ward, Flowers, Allan and O’Carroll2011). Through highlighting these issues early on during a person’s journey following an impairment, rehabilitation services can begin to support people to consider the impact and integration of support workers in their private lives. Finally, to help prepare people for what to expect once in the community, rehabilitation strategies could provide as much information and resources to individuals and families prior to community integration as possible. A key resource might include linking people and their families with others who have first-hand experience.

Different rehabilitation practices and contexts will inevitably require unique approaches and strategies to support interdependence, and there are a number of challenges involved in such a process. For example, how do services support and enable people to feel confident enough to articulate their needs? How do they help people to learn about their new circumstances and become an expert on their own body and health needs? And what of people whose ability to exercise decisional autonomy is compromised? In what capacity, and with whose support, do such people exercise self-determination? Each service will have their own response, and future research is needed in this area. However, a starting point for negotiating these challenges could benefit from adopting an “Appreciative Inquiry”, a philosophy and method for transforming health services (Trajkovski et al., Reference Trajkovski, Schmied, Vickers and Jackson2013). Appreciative Inquiry promotes a strength-based approach to change and prioritises positive dialogue to establish what works well, for whom, and using that information as a starting point for change. More specifically, rehabilitation clinicians can engage in efforts that demonstrate a respect for a relational approach to independence and autonomy; explore strategies specific to each individual based on their priorities and wishes; and help to humanise support worker connections through partnering with people to better prepare them for such relationships following impairment.