Conversations with Families and Caregivers in Hamilton, NZ
Before I left the north island of New Zealand, I made a trip a few hours south of Auckland to Hamilton. There, I was able to spend the week with the wonderful team at True Colours Charitable Trust. This service provides counseling, clinical, and emotional support for families who have a child with a serious health condition or who are grieving the death of their baby or child. Through this experience, I was connected with a number of incredible professionals working in this field and families who were gracious enough to answer my questions, tell me about their perspectives, and share their stories with me.
From these interactions, I have synthesized a number of the key themes, ideas, and insights that emerged during my conversations throughout the course of the week I spent in Hamilton.
While I feel that a number of these experiences are universal when a family has a sick child, the ways in which families and caregivers navigate and cope with these experiences may be unique to being in New Zealand, or even in Hamilton more specifically. I hope that as I continue my Watson project this year and travel to more regions and countries, I will see interesting nuance and variation appear in how families, caregivers, and communities deal with these same challenges.
Financial Burden of Caring for a Sick Child in NZ
For my readers from the US, it might come as no-brainer that caring for a sick child can cause some financial strain on a family. But, coming to New Zealand, the extent of what this looks like for families here was a bit surprising to me. Since New Zealand has a universal public healthcare system, I naively thought the burden financially of having a sick child wouldn’t be felt that greatly by parents. In speaking with parents, some of them even expressed that they didn’t realize how quickly the costs would accumulate.
The cost of bandages, $5 prescription fees, trips to and from the hospital, etc. were new expenses added to weekly household budgets for families with recent onset illnesses and unfortunate parts of life that must be taken into account for those with children with chronic conditions. There are a number of governmental assistance programs in New Zealand that will assist with some of these costs, and help make ends meet for families where a parent must leave the workforce to care for their child, but they don’t quite stretch as far as one would hope, according to the parents I met.
There are other avenues, though, that parents can access (if they are aware of their existence) to get further assistance. Families can apply for grants, of various amounts, to help pay for vehicle modifications, specialized equipment, education, and activities that increase independence.
One family I spoke with shared how the disability services from the government have been improving since they have been involved with the system for their child. I was told about a program called Enabling Good Lives. This service goes out to the individual with a disability to conduct an assessment and determines what they need in order to have better quality of life, such as increased autonomy, greater social connectedness, or better access to education and employment opportunities. They then provide financial assistance of a set amount to the family to facilitate that, but leave the precise manner in which those goals are met up to the family and individual. This allows them to have much more choice and control over their own lives and the support they receive, and access more resources without pulling from the family budget.
The government will also help subsidize some of the costs of respite care, through “carer support”, which allows the full-time caregiver (with children, often a parent) to take some time for themselves. A potentially unanticipated challenge that comes along with utilizing respite or home help for families, though, is having to manage that. One family shared with me that caring for their child with a disability, at times, felt like managing a business. They had to list job postings for nursing help, hire and fire staff, maintain payroll and work schedules, etc.
Mental, Emotional, and Physical Burden of Caring for a Sick Child in NZ
Talking with parents and the professionals that are in roles to support them, many spoke about the unrecognized mental, emotional, and physical burdens that come with the financial challenges when you have a child that is ill.
Caregivers often carry a lot of additional mental loads that may go unrecognized but that can drain physical and emotional capacities while caring for a sick child. While having to deal with immediate practical concerns at hand like having to stay on top of administering medications, going to appointments, and picking up prescriptions, they may also be grappling with feelings of depression, guilt, grief, anxiety, concern for the future, etc. all simultaneously. This can make the everyday tasks, that previously felt manageable, begin to feel impossible. Things like picking up other children from school, going grocery shopping, or cooking dinner may start slipping through the cracks or just take much more energy than they did previously.
When I asked one mother what support she wished she had, she decided to share advice that she would have loved to have been told which she now offers families just starting out on their journeys. She told me that she warns parents to be prepared to feel all of the feelings. She said that there will be periods of anger, frustration, confusion, burnout, exhaustion, depression, and guilt. She also said that she suggests limiting worries for the future. Balancing the “what if’s” and anxiety about what is yet to come or what might not along with the necessary to-dos and the here and now, she said, can get to be too much very quickly. Further, she said that many of those worries turn out to be unproductive and don’t serve much good. Her advice is to save the mental energy for the concerns at hand that need them.
In New Zealand, parents are heavily involved in their child’s care, both in and out of the hospital. They may take on roles as primary informants, documentarians, researchers, providing hands-on medical care, and making decisions on care plans and approaches. This can be a double-edged sword. It is great to allow for that level of involvement of parents in caring for and looking after their child even in the hospital setting, but I heard from some parents that it can also place an unspoken expectation on them that they must have it all together at all times and their child’s care is dependent on their ability to perform those roles well.
A family support worker from an organization I worked alongside briefly shared a story of being with a mom as her child passed away. The mother, though, did not cry until the family support worker shed a tear. The mom viewed it as permission that she no longer needed to be presenting herself as only strong in that space.
In speaking with another professional who supports parents during these journeys, she shared with me that many mothers are initially hesitant to open up about their true emotions, coping, and experience of the events. This is because much of this has been pushed down in order for them to be able to maintain functioning and match the expectations that they are, or assume they are, supposed to meet. There is a worry that once they start talking, sharing, and expressing their feelings and emotions, they won’t be able to stop, push it back down, or put back on the facade they wore previously. The professional also told me that some of these mothers worry that the burden is too much for others beside them to carry. It is the job of the professional to reassure them that they can leave that heaviness with them. So, there is even a sense of parents trying to offer caretaking for others when in positions of seeking care for themselves.
Trauma and PTSD as a Parent
Children with complex, chronic, life-limiting, or life-threatening illnesses typically require a higher degree of medical intervention - more clinic visits, hospital stays, and interactions with the healthcare system - than one that makes it through childhood without such diagnosis on their medical record. As such, parents have many more encounters with the hospital environment and all that it entails and accompanies it. This allows for a greater chance of having bad experiences and being in situations where a mistake is made, something goes wrong, or the child/family is not treated in the manner they should have been treated, due to sheer probability.
Healthcare professionals and other supports need to recognize that even if nothing happened during that particular hospital stay, clinic visit, or medical encounter, in the setting a parent is recalling all of the other times, for example when they had to forcibly advocate for their child to get their needs met, when things went wrong, when mistakes were made, when they weren’t listened to, or when their child was seriously/critically ill. That trauma accumulates. So reactions of parents to a situation in the healthcare setting may not make sense to the caregivers or professionals until the whole context is recognized, understood, acknowledged, and taken into consideration.
Finding Supports that Give Parents Strength
Unlike some other counseling services, at True Colours there is no timeline for parents for when they need to access the support and no restrictions on how long the relationship lasts. Some services can only allot 6 or 8 sessions for an individual to receive counseling due to how the funding works. But, since True Colours is a full charity and they get no government funding they do not have the same limitations on the services and support they offer. This seemed to provide parents with a lot of comfort that there were supports available to them to access when they felt they needed them.
Having access to reliable, quality respite care was one area of support that parents acknowledged as being really beneficial and important yet hard to get. This is an area where many parents saw a need for improvement.
Families told me that they really valued getting connected with organizations and supports outside of the hospital early. These were places and people that had a shared knowledge of their experience generally, and the locations and caregivers they were interacting with. It also provided access to support and community that didn’t end when hospitalization or illness ended or if their child died. They found a lot of value in peer support, community, and safe spaces outside of the hospital.
Benefit in Shared Understanding and Connections
For many parents, it felt important to have safe spaces and people with shared understanding of what they are experiencing to relate with along their journey. This extended, for many, beyond peer support networks and into the professionals from whom they sought services, too. In this connection and understanding, there is a sense of comfort that many families find in knowing that they do not need to fully explain themselves, because who they are talking to and empathize with them.
Child’s Voice Matters
Finally, the last main theme that really stood out to me throughout all of my conversations was the belief that the child’s voice matters. For many professionals, this was at the heart of what they do and why they do it. There is a belief that children have a voice that needs to be heard, they need to be included in conversations, given a place to speak, and then they need to have their opinions, thoughts, and perspectives actually listened to by those traditionally making the decisions.
For one professional I spoke with, this meant acknowledging the medical trauma many of the children in the practice experience and the potential associations that come with being another adult in that space offering care. Children with medical trauma may be slower to trust new adults due to their experiences of others in positions of power acting overtly causing them trauma while being observed and permitted to do so by other adults in the space, in the name of care. So, this professional allows extra time for building rapport and creating a sense of safety and security when working with children who have experienced illness.
Another professional I spoke with, who works primarily with adolescents and young adults, refers to all of their patients as “boss”. This serves to reinforce who is in charge in the situation, where the power is held, and who has the right to make decisions about the adolescent’s or young adult’s body and care. It also allows for a greater sense of control over the situation and circumstance the young person finds themselves in, which is often lacking in these contexts.
There are many ways in which the individuals I encountered have embodied this ideal. No matter what approach they took, it was apparent that recognizing that the child’s voice matters was guiding their work day in and day out.
If you want to stay up to date on my blog, consider subscribing to be notified when I post!
Comments