For 1 Question Answered, 5 More Emerge...
If you are following my adventures on my Instagram page (shameless plug <3), it’d seem like I have not done any work on my actual project recently. The photos I post tell a deceiving story of days filled only by adventure, excursions, and sight-seeing. But, the majority of the time in my week is spent in meetings, site visits, observations, conversations, and doing research related to grief, mourning, death rituals and the supports that exist to care for families before, during, and after child loss. Every time I step out of the door of where I am staying, I pop in an earbud and press play on a podcast related to the above topics. In the afternoons, I have lists of things to look up, explore, and check out when I have time. Often, it is not that afternoon, though, that I actually do that research, as I am quite exhausted by the events of the day that have already occurred.
I spent the past three weeks working alongside and talking to a variety of charities and other organizations in New Zealand. The second portion of my time in New Zealand so far has provided a nice contrast, counterpart, and comparison for my first two weeks here. There was a lot that I knew about what to expect for the workings of the hospital, just based off of my own conception about what a hospital is and does, as well as the research and reading that I had done prior to my arrival in the country. Yet, I was still surprised by all that was unexpected and different. (Check out my previous blog post to learn more about what I mean!) When it came to working with these charities in New Zealand, going into the experience, I knew that there was a lot more that I did not know. The whole charity system as it functions here felt new and unique to me. As I navigated within and between them and shared my project with those I met in cafés and on the bus, I got such a wide variety of perspectives on how charities work here, how they are used, and what role they play in the country and the lives of those they serve. To summarize, these three weeks have challenged my understanding and listening skills, forced me to examine my own assumptions and biases, and have added a thin layer of confusion to areas where, earlier this month, I clung to feelings of clarity. But, more on all of that to come!
Here is a little bit of information on each of the organizations and people that I visited over this time!
Aroha is a Māori word meaning love. Aroha Funerals was developed with the intention of providing services to families when planning to say good-bye to a loved one. They strive to provide families greater choice and customization of the related ceremonies to fit their wants, values, and needs. They wanted to move away from the more traditional practices of funeral directors, typically a pair of men (father and son) in pressed suits, dictating the sequence of events to a family and offering little space for personalization of services. Aroha Funerals is also committed to making the whole process as natural as possible, often opting for very eco-friendly practices. For example, they usually don't embalm the bodies but rather keep them on cool mats and offer burial caskets made with only natural materials.
BabyLoss New Zealand is a charity with its main office in Papakura (south Auckland) that helps support parents and their families who have experienced the death of a baby during pregnancy, at birth or in infancy. BLNZ serves families from Middlemore Hospital, Starship PICU, and funeral homes, with occasional services available to other hospitals/locations in Auckland. They provide loss care boxes to families who experience stillbirth and miscarriage and do memory making (including taking hand and foot casts, inkiness prints, and photos) to families who experience these losses. They also support families who wish in "Active Parenting" after the loss, which includes holding baby, bathing and clothing baby, and participating in the memory making services.
Heart Kids provides free, lifelong support for children, teens, adults, and families impacted by childhood heart conditions. They provide in-hospital and community support for families. They offer coffee chats as support meetings in a variety of regions, host trips that Heart Kids can take, hold memorial events to honor Heart Angels, and are simply a warm presence to walk along families and help them as they navigate their lifelong heart journeys. They say, "once a heart family, always a heart family." This represents that they will be there to offer support through every up and down, every twist and turn.
Cloud Workshop offers free art workshops for bereaved children and those with life threatening illness in their family ages 3 to 18 years old. This offers a space for the children to engage in a creative outlet and be surrounded by others who know what they are going through. It offers a safe environment for them where they do not have to explain, but they are understood. Cloud Workshop intentionally hosts workshops on significant dates that can be particularly challenging for many bereaved children, such as Mother's Day and Father's Day. They also host a weekly group for teenagers on Thursday afternoons/evenings to allow them to have their own space to get together. Often, the teens don't discuss their grief, but they are able to connect with others who share similar experiences and not be known as "the one whose ____ died" for a bit. These gatherings are always accompanied by a spread of afternoon tea!
Make-A-Wish in the US began in 1980. New Zealand was one of the first international affiliates to be founded, with the charity forming in 1986. Make-A-Wish New Zealand creates life changing wishes to every wish-eligible child throughout the country.They grant over 150 wishes very year with the assistance of fantastic volunteers, donations, and a team of staff heading the charge from Auckland. At Make-A-Wish, they don't work with kids, but rather for kids, making sure to really capture the child's wish and the "why" behind it, and then doing everything in their power to make the impossible possible to make that wish come true.
Ronald McDonald House emerged as a charity in New Zealand in 1989, just 15 years after it was established in the US. RMHC New Zealand provides support to families when their child is in a hospital away from home. In 2020, that looked like providing free accommodation and other support to almost 3,700 families. They have both Ronald McDonald Houses where families can stay while their child is receiving treatment, generally, if they are at a hospital at least 30km away from home. Within the hospitals, they also have family rooms, which have play areas for siblings, snacks and drinks for families, beds, and a quiet space for families to relax within the hospital. Finally, they offer a family retreat space in Rotorua, allowing for one week of free family holiday/vacation for families who have experienced the impact of chronic/long-term illness or a bereavement in the family.
Child and Adolescent Psychotherapist
I met with a child and adolescent psychotherapist who specializes in working with bereaved children and children facing illness. She trained as a pediatric oncology nurse before going back to school to become a child and adolescent psychotherapist and working with palliative care patients before moving into private practice. Her work is based in play and is child-focused and child-led and often uses sand tray therapy with the children with whom she works.
Again, I want to preface this post with a few disclaimers.
I have only visited a small area of the country so far and interacted with a relatively small number of people doing the type of work I am interested in learning about during my time in New Zealand. There is much more to see, explore, and many more perspectives, cultural experiences, and integral people still left for me learn from to get a better understanding of the broader picture as it relates to my project goals.
I'm expecting that many of these observations and reflections will evolve as I continue my time in New Zealand and my partnerships with more healthcare professionals, charities, organizations, families, etc. I expect that these observations will continue to evolve and change as I keep understanding care, support, mourning, and death practices surrounding child loss through my journeys to Chile, Senegal, Belgium, Ireland, and then back to the US. This is a momentary encapsulation of what I have observed and some of the thoughts I've had thus far, which I think is important to recognize. It will be especially interesting to see how these do change as I continue to learn.
What I Have Learned
One of the major things that I have learned is that the services and supports available to families through charities and other similar types of organizations really depends on the region they are living in. Even for organizations that support the entire country, the actual services and offerings can vary depending on if a family is on the North Island or South Island and if they are located near a major hub/city or not. Other charities only exist in one area and so only families and individuals near that region can benefit from their services. For example, BabyLoss New Zealand and their specialized offerings of castings and active parenting services are only guaranteed to families that experience the loss of a baby at Middlemore Hospital in south Auckland. So, even families just beyond that catchment area and gives birth at Auckland Hospital instead, who maybe only lives a few minutes away from a mom who was able to get all of the offerings from BabyLoss New Zealand, at the moment wouldn't be guaranteed access to them.
This brings me to another thing that I have learned through talking with folks who work for or with charities, which is that access to the services they offer is often fairly reliant on who you know. By this, I mean that a lot of people discover relevant charities for support through word-of-mouth. A number of the individuals I met who were associated various charities didn't know of the charity's existence at the time they could have used the support most, but were able to go later to get retroactive support and offer the help to others that they would have liked to receive. Even in the hospital system, not every patient or family is told about relevant charities that might be of service to them. Others shared with me their observation that it seems some healthcare workers assume the knowledge/information is already known, so it ends up never being told at all. However, families found that getting a support person (whether it be a doctor, nurse, social worker, or person from an outside charity or organization) who gives the information, even if it may be repetitive, made all the difference to discovering what services and supports might be out there for them.
While I did my observations at the hospital, it seemed to me that families were getting services, assistance, and wraparound support from a variety of charities and organizations, including governmental and hospital programs, simultaneously. When talking to some leaders of several of the charities I met with over the past several weeks, they validated these observations. However, talking with other individuals working for some charities or organizations in New Zealand or families using these services, they talked about only really relying on one main charity/organization as a source of support as they navigated their journey. A lot of this could be due to personal needs, desires, and individual circumstances as well as the type of charities that I got connected to so far. But, I am curious about how many services are generally used by families at a time and if they often get support from various avenues or just rely on one mainly.
Something else that I have heard conflicting information about so far is the interaction between charities/organizations (healthcare related) and the medical system as well as between various different charities/organizations who are all doing related work. Some have described these relationships as really strong, collaborative, and mutually-beneficial. Others have described them as difficult to navigate at times. While others have indicated that they don't seem to see much collaboration or interaction at all.
Finally, I noticed that there exists a lot of variation and many differences within the structures of charities and organizations in New Zealand. There are many different approaches to how these groups are run and operated. For one, the role of the charities/organizations themselves can differ. They can offer momentary support, short-term support (e.g. during a crisis, bereavement, hospitalization), or can have long-term involvement with the families they serve. The type of services they provide vary too. Some offer resources and information. Others provide practical support such as meals, grants to defer the costs of funerals, or assistance with housing and transportation. Some provide opportunities for memory-making and positive family interaction during times of stress, heartache, and loss. Others provide emotional support through meetings with others who share similar experiences or counseling services. The involvement of the charities and organizations run a wide spectrum, too. Some never know the stories of the families they are serving but yet are able to offer comfort and solace. Meanwhile, others may form tight relationships with families that span decades. These charities and organizations can be operated by a single person or a whole team of staff and volunteers. Lastly, they differ in their foundation. Those that operate the charities and organizations have a whole host of different motivations and paths that led them to taking on that challenge - whether they inherited it from a former leader or founded it themselves. With that, the leaders' backgrounds, experiences, qualifications, education, and approaches to operating these charities and organizations are all as diverse as the populations they serve.
What Questions I Still Have
In General/For All Stakeholders:
Who is most likely to use and benefit from the services offered by charities and organizations?
What is the societal culture and reaction in New Zealand around getting support from charities and organizations?
What is your perception of the role of charities and similar organizations in New Zealand in providing support for children and families before, during, and after the death of a child?
What supports do you have in New Zealand that you find to be really valuable in supporting children and families before, during, and after the death of a child?
What supports do/did you not have that you wish were available to you?
For Families Using Charities'/Organizations' Services:
How did you learn about this specific charity/organization?
Do you get support from multiple charities/organizations or just this one?
What has your experience been like with this charity/organization? What impact has it had on your life?
What made the process of finding support easier? What made it more challenging?
What do you wish others (healthcare professionals, family members, friends, community members, governmental systems, etc.) knew, would do differently, would do more?
What do you think is necessary for people to know/to do to allow them to provide the best support to children and families before, during, and/or after the death of a child?
For Charities/Organizations:
What was the process for setting up the charity/organization?
What was the motivation for setting up the charity/organization?
For directors: What led you to run this charity/organization? What is your background?
What steps do you take to ensure the needs of your specific population are being met?
How has the COVID-19 pandemic impacted the work that you do and the population that you serve?
For Healthcare Professionals:
What charities and organizations do you often mention to new families and patients?
What charities and organizations do you work closely with?
What is the interaction like between charities and organizations providing support and the healthcare system?
Where I Go From Here
The topic of charities and organizations outside of the publicly funded health-care sphere and governmental programs and their role in supporting children and families seems to be one that is quite variable in New Zealand. What I have observed is that I can get polar opposite the answers to the same questions, just depending on who I am speaking to at the moment. Without living in this system firsthand, it is hard to tease out fact from political orientation, the speaker's own lived experience, or just general perception. Another added layer to this is that I have only really discussed this topic so far with healthcare professionals and directors/staff of the charities or those who frequently use and benefit from those services. All of these groups have also been located in Auckland so far. So, that is not a big region of the country being represented nor is it a very diverse (in a broad, encompassing sense) selection that I have been able to speak with yet.
My hope is that over my next two months in New Zealand I will be able to talk with more individuals - in Hamilton, Christchurch, and Wellington - about the questions I still have left lingering in my mind about how children and families are receiving support before, during, and after the death of a child in New Zealand.
I also plan to not just ask these questions to the individuals and organizations that are hosting me. So far in my time in New Zealand there has been a pretty clear division between times when I am working on things related to my project and times when I am not. Because my topic is a bit uncomfortable for most, and unconventional to say the least, I have even found myself giving an altered description of what I am studying to strangers who I've met at various junctures who ask about my time in the country. I'll say "I'm looking at how different countries and cultures care for children and families" or "I'm exploring the supports available to support children and families facing critical and terminal illnesses" or "I'm studying how different cultures and countries approach and are treated in pediatric medicine." While all of this is, at times, encompassed in my work, it is not my work. My work is looking at the death of a child and how to best support individuals throughout that difficult time through cross-cultural exploration.
I need to be honest about my goals and my ambitions, even in random encounters at cafés or on the bus, to allow for organic, natural conversations about something that is rarely discussed so openly. That is part of what this project is about, too. I am not only trying to learn from other cultures about their practices around grief, mourning, and caregiving, but I am also working to undo some of my own cultural bias and sense that talking about death and dying is taboo and wrong. For heaven's sakes, I am doing a year-long project about death, I should be able to talk about it...
So, I am going to start being less hesitant to ask reflective questions and engage in deep conversations. I am going to be more intentional about the questions that I ask, the information I am trying to gain, and the experiences I hope to have. I am going to really try to focus hard, for my remaining time in New Zealand, to uncover a broader perspective on this topic, put myself into new situations (even if they are uncomfortable), and keep tying it back to my aim of learning about what supports exist and what supports are missing around the world.
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