Zoë’s Place Baby Hospices provide palliative, respite and end-of-life care for children between the ages of 0 and 6, who suffer from life limiting or life threatening conditions.
Zoë’s Place Trust is the registered charity under which all Zoë’s Place Baby Hospices fall. The charity founder is the current Chairman of Trustees, Professor J.J Scarisbrick, who identified that the country lacked facilities that were specialised enough to care for children requiring respite, palliative or terminal care. It was also noted that families of these children required support during the child’s early years, rather than later.
Through such cognizance, the concept of a Baby Hospice was derived, and eventually brought to life under the name of Zoë’s, which is a Greek word, meaning ‘Life’.
Currently there are three Zoë’s baby hospices across England, with myself being based at the Middlesbrough Hospice. At any time, each child here has their own nurse attending to their own individual need s. Care therefore occurs on a one to one basis.
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The hospices main aim is to provide a home from home environment, where both the children and their families can come for a break.
Zoë’s also understands that it is not only the child who is affected, providing the family with support, advice and the opportunity to stay and relax with their child during their visit.
Each Zoë’s hospice receives very little government funding and relies heavily on donations. Zoë’s place in Middlesbrough currently requires approximately £1.5 million to keep their doors open. The costs associated with caring for each child equates to £25 per hour, or £600 per day. At any one time, Zoë’s Middlesbrough can cater for six children, amounting to a cost of £3,600 over a period of 24 hours at its maximum capacity1.
Each individual Zoë’s hospice has a large number of staff teams working within it, employing beyond just care staff. Zoe’s Middlesbrough employs: a finance, fundraising, maintenance and care team, who work alongside trustees and volunteers.
Because my organization is multi-disciplinary, it would be wrong to look at one aspect. For example, if I was to simply observe the staff and the individuals using the organization, I would not be able to appreciate the interaction the community has with the organization itself – This was observed during my time with the fundraising team.
Limiting myself to one research method would prevent me from being able to obtain the larger picture involved within the organization.
For this reason I chose to undertake an ethnographical study, allowing me to triangulate data gathered from various sources through different research methods.
The main aim of ethnography is to provide detailed and holistic comprehensions into not only the actions of an individual, team or organization, but to also be able to understand their interactions and perceptions of one another. It allows for reflexivity, which is a term used to describe the relationship possessed between the researcher and the world which they are examining2.
Focusing on the research methods used within my ethnographical study to date, these have included participant observations, informal interviews and documentary data:
Participant observations have allowed me to gain a candid insight into not only the employees of Zoë’s, but also the families utilising the service. It allows myself as an ethnographer, to engage within not only the environment2, but to also experience the atmosphere, which is vital in witnessing very subtle, yet informative events.
Informal interviews allow questions to be asked in a very naturalistic manner, amongst normal conversation. It is a highly beneficial aid in gaining authentic accounts from individuals within the conversation2. As an example: informal conversations between staff whilst on their shift, or with parents picking up their child.
After signing a confidentiality form, I was allowed to look at documentary data, which involved the analysis of each individual child’s folder, containing information such as referral forms and care plans.
As soon as possible, after leaving the environment being observed I would write up my observations and any data collected through the use of fieldnotes. Fieldnotes were never made whilst in the environment being considered as I think it would not have provided a valid interpretation, with staff members acting cautiously if I was taking note of their actions in front of them. However, this meant that an element of recall bias might be involved.
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In the future, I aim to carry out semi-structured interviews with various staff members, parents and siblings. These would allow for a more in-depth conversation. As an example: exploring inter-professional relationships such as those between the Nurses at the hospice, and the hospital staff that they liaise with when any child requires hospital admittance.
Examples of my Chosen Research Methods
Below is a small abstract obtained from the fieldnotes that I have already collected through my fieldwork:
5th February 2015
It was feeding time for one of the individuals at the hospice. For the sake of anonymity, I will refer to her as June. June is a little baby girl, who has a chromosome 22 microdeletion, along with a global developmental delay.
Her parents encourage her to feed orally and her dietician sets a feeding regime in place. The problem however is that June feeds very slowly, often taking over an hour to consume her pureed food, tiring her out. Because she takes so long to feed, she often falls behind on her feeding regime, and does not have the energy to catch up on subsequent feeds.
I then asked the staff member who was feeding her, why she wasn’t tube fed if she struggled so much with oral feeds. This was when several staff members said that they all agree that she should be tube fed, however the parents have insisted that she should be encouraged to be fed orally.
From this data I was able to witness the fact that decisions between service providers and user families are not always mutual.
However, as per the organizations rules, staff members are to follow the wishes of the parents, as long as written conformation from the child’s doctor has been provided; ensuring that the parent’s wishes are not detrimental to the child.
This example above showed me that staff members consider parents wishes, but ultimately rely on approval from the child’s doctors before changing care plans. This hierarchy is of high importance when considering effective communication and teamwork. GMC guidelines state that it is imperative for individuals to be capable in communicating effectively with not only colleagues in their team and their organization, but also with other professionals and agencies3.
It has been shown that children with serious chronic diseases who suffer from short-term malnutrition have increased risk of infections, decrease in their physical activity and a reduced reaction to external stimuli. This leads to further complications if malnutrition is prolonged, including: impediment on growth, orthopaedic complications and also interrupted cognitive delay4.
It is said to be beneficial if children with serious chronic diseases are placed on Home Enteral Nutrition (HEN), improving the nutritional status and growth of the child, whilst reducing both short and long-term morbidity in such children. HEN also holds the potential to improve quality of life and also holds benefits to the NHS, reducing Healthcare costs 4, 5.
However, HEN placement is an extremely traumatic period for both the child and also to their caregivers. The influence such anxiety can have on parental views often means that they are dissuaded from using such device. In terms of June’s parents, this could have played an important role in their reasoning behind wanting June to be orally fed, as it is a heavy emotional burden4.
The Implications of my Chosen Research Methods
By using participant observation as one of my key research methods, I believe that this has allowed me to experience the importance of having such an organization for the primary caregivers of these children. To explain this I would use an example of one the children, referring to him as T to maintain anonymity.
T is a one-year-old boy who cries constantly throughout the day, to a point where he requires sedation every night, ensuring that his body gets a few hours of rest. If T is carried he calms down a little, however his weight means that it is difficult to carry him for long periods.
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Considering this from the parents’ view, no matter how much you may love a child, crying to this extent become exhaustive, especially when nothing settles him. Even carrying out such basic tasks such as showering becomes a struggle, and sleep deprivation is another problem that often comes with being the primary caregiver of a highly dependent child.
In terms of my future placement-based research, participant observation has showed to be the most effective research method rather than observation. This is because, with observation I would not have been able to truly experience how difficult it is to in fact look after a child such as T. However, with participant observation, I was personally able to help look after him and realised how difficult it was, as I was struggling after just half an hour.
In terms of my personal and professional development, Zoe’s as an organization has made me consider just how important it is to not only support the child, but to also support the family in such situations, and the influence such an organization can have in maintaining sanity for the care-givers; such that they continue to be able to provide such important care.
Research by The University of Leeds has showed that informal carers save the NHS £119 billion a year6. Without hospices such as Zoe’s providing respite care, caregivers may never be able to re-charge their batteries. This could potentially lead to a deterioration of their own health, costing the NHS more in terms of treatment for the individual, and the associated costs involved in caring for those that they care for.
1 Zoë’s Place. Zoë’s Place Baby Hospice: About Us. http://www.zoes-place.org.uk/middlesbrough/about-us/ (accessed 21/02/2015)
2 Reeves S, Kuper A, Hodges, BD. Qualitative Research Methodologies: Ethnography. BMJ. 2008; 337: a1020
3 General Medical Council. Protecting Children and Young People: The Responsibilities of All Doctors. London, GMC. 2012.
4 Pedron-Giner C, Calderon, C, Martinez-Costa C, Gracia SB, Gomez-Lopez L. Factors Predicting Distress Among Parent/Caregivers of Children with Neurological Disease and Home Enteral Nutrition. Child Care Health Dev. 2013; 40, 3, 389-397
5 Wilken M. The Impact of Child Tube Feeding on Maternal Emotional State and Identity: A Qualitative Meta-Analysis. Pediatr. Nurs. 2012; 27, 248-255
6 Buckner L, Yeandle S. Valuing Carers 2011: Calculating the Value of Carer’s Support. London. Carers UK; 2007.