Abstract
I’m on my bike.
The temperature has climbed to 30°C and I am slowly ascending a hill about 60 miles into an 80 mile training ride. I am experiencing a sense of doom; my cadence is dropping, my speed is falling, my training partner is disappearing into the distance and my energy levels are in my boots. Instead of being ‘The Little Engine that Could’ I am becoming ‘The Miserable Engine that was Unsure’. As I check my bike computer I see a cheerful splash of pink and purple on my jersey and remind myself of the reason for this training ride. I’m two weeks away from riding 100 miles for WellChild (www.wellchild.org.uk) – a UK charity that helps seriously ill children, especially those with long term, complex health care needs.
I contemplate the forthcoming ride. I have a special jersey to mark me out as a WellChild supporter and to instil an extra sense of purpose. I’ve been receiving instructions and information on a regular basis. The route is well planned – on the map I can see every twist and turn, every shift in altitude. The route is well supported; there are feed stops at regular intervals with free food and drink to sustain me. At key points, such as just before the biggest climb at mile 68, when spirits may be flagging there are ‘cheer points’ where WellChild supporters will shout encouragement and tell me how well I am doing. At the end of the ride I will pick up a commemorative medal and I have an invite to the post-event party with the chance of a massage to soothe aching limbs. I’m motivated. I am stubborn and I will persevere.
It’s also completely my own choice.
I start to think about the parents and children who WellChild help. Their route map is nowhere near as clear as mine; the complexity of their child’s illness and their child’s response to interventions create unpredictable shifts and turns in the road. Even expert health care professionals can find it difficult to predict what lies ahead for parents. Rather than clear directions such as ‘turn right in 400 metres’, parents are told ‘we think that…’, ‘your child may…’, ‘it’s hard to be sure what…’, ‘our best guess in the circumstances….’.
Many parents feel they are navigating this route on their own with minimal support and little offered in terms of emotional sustenance to sustain their well-being (Solomon et al 2001). They focus on providing for their child, often at the cost of looking after themselves. Instead of ‘cheer points’ that provide encouragement, there is an unwritten expectation that parents will simply carry on, regardless of how rocky, how steep or how difficult the terrain they have to cover. To be fair most parents would not thank you for simply shouting encouragement at them or giving them a parenting medal. However, there is plenty of evidence that shows the time demands placed on parents of the health-related caring tasks (McCann et al., 2012), the challenges of apparently simple tasks such as travelling to and from different places (Nicholl, 2015), and the sense of being overwhelmed and under-recognised for the tasks they take on top of their usual parenting roles (McCann, 2015).
Parents persevere.
Loeb’s (2005 p23) concept analysis of perseverance in caregivers (albeit those providing elder care) suggests that caregiving perseverance is characterised by five elements: perceived responsibility, sense of the “right” course of action, disciplined behaviour, expending effort over time, resourcefulness, and positive coping”. Parents epitomise these characteristics. They are tenacious in ensuring that their children’s lives are as full of opportunities as possible and equally tenacious in ensuring that their child receives the best possible care. They persevere in spite of the challenges they face. They persevere because of the challenges they face. They persevere because they do not perceive they have much of a choice but to persevere. And they persevere because it is “what you do as a parent”. Charities such as WellChild help parents persevere.
Slogging up a hill on a bike doesn’t seem like such a big deal in comparison to what parents do every day.