Hidden Impacts on Caregivers

What does the research tell us about a parent's experience?

By Qudrat Aujla

A mom with her daughter and son, cuddling together in their home.

Hi – I’m Qudrat, and I recently joined West Coast Kids Cancer Foundation as their Mental Health Resource Coordinator. While I’m exploring support for families, I wanted to highlight important research about caregivers’ experiences.

Childhood cancer and blood disorders impact parents in ways that the world doesn’t see. Let’s shine a light on this and make sure caregivers are seen, heard, and supported.

We can explore this topic through themes that describe real, felt experiences.

Hidden patients

Parents are “hidden patients,” because of the impact of the “multitude of tasks and duties that they have to meet”1

It’s a fact: parents have a huge number of unmet needs. These include “psychosocial, emotional, physical, informational, financial, educational, and spiritual needs.” This can cause exhaustion in each area and can severely affect their wellbeing.

We also know that parents need their own mental health support:

A graphic of a person carrying a huge rock on their back. Text reads "The emotional burden they have to deal with is enormous" (Lewandowska, 2021)

“Mothers experienced a 40% increased rate of mental health-related outpatient visits compared with controls.”2 This was true even when their child was in remission. Post-traumatic stress disorder (PTSD) is even more common in parents than their children.3 Lots of parents experience anxiety and depression too.4

Let’s not forget blood disorders: “Caring for a child with sickle cell disease has a significant impact on the parent's health-related quality of life and family functioning.”5 Caregivers need significant support of their own to protect their health across all the areas of their life. As hidden patients, they often don’t receive it.

Years of upheaval

“Treatment…requires complex, intensive, and lengthy regimens, often lasting years…diagnosis marks tremendous upheaval in the lives of the child and their family”6

Many people are surprised to learn how long a child’s treatment journey can be. For example, a child with Acute Lymphocytic Leukemia will go through two to three years of chemotherapy.7 Some children with blood disorders will need to get regular hospital treatments for the rest of their life.8

Even when a child has gone into remission, years of follow-ups can be needed. Three out of four kids live with long-term side effects9 and over 60% live with at least one chronic condition.10

All of this means a complete shake-up of life that goes on for many years. They can’t go back to the way things were, and the new challenges – becoming “mom-cologist,” moving into (or near to) a hospital, fitting life around medical appointments, leaving much-loved jobs and communities behind – eat up physical and mental energy over a long span of time.

A graphic of a house with a heart in the middle. The heart has a medical cross in it. Text reads, "They have to reconcile treatment and frequent hospital appointments with the hardships of everyday life." (Lewandowska, 2021)

Getting through each day

“The treatment of children with cancer is expensive and resource intensive worldwide…the medical cost is not the only cost for families”11

A graphic of a person pushing over a row of large dominos/books

Parents don’t just lose finances to treatment. They pay for whatever will make their child’s side effects more bearable, for gas to travel long distances for treatments and visits, and for pricey convenience food they can eat on the go. At the same time as these new costs mount up, they have to cut back on work and lose their main sources of income. They lose community resources and opportunities. How would we even begin to put a number to their emotional losses?

It’s not just about the cost. It’s about managing the stress of all of these pressures: “They have to reconcile the requirements of caring for a sick child with professional work, financial concerns, caring for healthy siblings and contact with the social environment.”12 It’s a lot to juggle.

When confronting serious illness, people need care and compassion for maintaining daily life functions.13 Each day can feel like a mountain to climb. Do we make sure caregivers have all the equipment to scale those heights?

A parallel world

“Navigating a fundamentally changed and unpredictable everyday life…was considered living in a parallel world…the majority of people standing outside…had difficulty understanding the family's current life situation”14

As parents take on new roles and work out new family dynamics, they feel like they exist in a completely different world. As they adjust to this unfamiliar world, they can feel alone, dealing with their problems on their own.15

My heart breaks reading about the “state of severe suffering” caregivers are thrown into because of “radical daily life changes”16 and that they work so hard to protect others from their pain:

“Parents revealed that they used the hospital car park to cry and express grief, or that they cried in the shower or silently under the pillow when the child was asleep…Others felt that accommodating their own needs was unmanageable; as if words and deeds are oceans apart.”17

Parents can sense their friends’ and relatives’ discomfort and fears about facing the family’s suffering, and they can feel the distance that comes from discomfort.

This is what life can be like for parents navigating childhood cancer and blood disorders. We should take hope in the fact that we can lighten the load.

So, what helps?

Acting quickly

“It is very important to quickly identify and respond to the needs of families to minimize the negative effects of the stressor, allowing families to focus on patient care.”18

Parents have shared that something as simple as visiting the family when they were admitted to the hospital was a real help. It cheered them up and “...made it possible for the parent to do something other than watch over the child.”19 It gave them a break from parental duties and allowed them to rest.

This kind of immediate support, along with finding coping strategies that work for them, can “significantly improve the functioning of the parent…It also means that a child’s illness does not always have to be associated with a long-term emotional crisis.”20

Friends and family have valid worries about upsetting their loved one, stepping on toes, or of their help not being helpful.21 Be reassured: simple things offered in a timely way can really make a difference. Rachel Dawson’s blog is full of useful ideas.

Sometimes a caregiver needs a listening ear: “The parents were able to talk about the hardship with someone trusted…without having to explain themselves…when the parents experienced comfort, it facilitated taking care of their child.”22

Showing up quickly can help caregivers feel held at a time of great shock, and reassure them that they will not be alone on their journey.

Practical everyday tasks

“...parental caregivers are experts in their everyday experiences living with childhood cancer”23

Research keeps showing that parents hugely appreciate practical help with daily activities. We don’t need to look up an academic article – we can just talk to a caregiver! This sort of help can look like cooking, taking care of mail, cleaning, looking after siblings, school drop offs, providing respite, walking the dog, and anything that makes life seem a little more normal.24

Offering to tell others about the family’s situation can also help, and removes the burden of having to keep updating everyone.25 If the family is happy for the news to be shared, it can mean that the circle of care grows and more people offer more support and resources.26

A mom sitting in a clinic waiting room with her two young sons sitting on either side. They are eating pizza. Text says "Let's help to make everyday life feel more possible."

Reaching out

“...those who experienced receiving sufficient support from their networks…experienced less stress.”27

Caregivers who are socially supported feel less depressed.29 Social support means compassionately acting to ease our friend’s suffering.30 We know that parents often don’t have the time, space, or resources to practice self care or express their needs. Sharing responsibilities across social networks eases emotional and practical burdens, but to be effective, they “must be available, outreach, and responsive to needs.”30 What a relief when people do kind things without waiting to be asked.

More resources

We’ve explored the community support that makes a difference, but that’s not the whole picture: “Customised psychological services or interventions are highly needed for the parents of children with cancer.”31 Counselling and mental health support is desperately needed.32 This is all the motivation we need to connect caregivers to available resources while calling for more and better access to timely mental health support. Research should turn into action.

Support needs to span the entirety of a parent’s experience, from diagnosis to treatment, remission and, for too many families, the impossible loss that comes from bereavement. Compassion means seeing another person’s suffering and being willing to help improve their wellbeing.33 Being attentive and expressing our affection through our actions means that hidden impacts are no longer hidden, and they don’t hit so hard.

I hope this research gives you helpful insights and helps to grow awareness of parents’ experiences. It’s not as important as our real-life connection to families and being led, informed, and inspired by them. They are the experts in their own lives, and I have much to learn from them.

I’d love to hear what you found most interesting from this blog. If you’re a caregiver, does it fit with your experience? What matters most from it all? Send me your thoughts below.

References

Posted in Awareness, Mental Health Program, Uncategorized