Maggie’s for Parents: A new model of support for parents and carers of children and young people living with life-limiting or palliative conditions.

The Need

Caregivers of children and young people living with life-limiting conditions face significant psychosocial challenges1, including:
  • Fatigue and below-average quality of life2
  • Increased risk of mortality after the death of a child or young person3
  • Increase risk for mental disorder: acute stress disorder (49–54%); depression and anxiety (15–27%); and stress (25–31%)4
  • Reporting being “trapped inside the house”, including a sense of physical and social isolation from community, exclusion from the workforce and the associated impacts on health and well-being5
  • Where there has been a death, reporting “living with the shadow”. This is the idea of death being unspeakable. Uncertainty and grief for the life that could have been, both for themselves and for their child and family5
  • In the short term, the dependent child risks losing their compass through the storm.
  • In the longer term, without a good enough parent, the young child moves early on to “defensively exclude” from their experience emotions that they have not been supported to feel safe with.

Parents of children and young people with life-limiting conditions need to be supported to:

  • Provide emotional company, and resonance
  • Be “bigger, stronger, wiser and kind”
  • Follow the child’s lead
  • Provide timely soothing, and opportunity for active interchange
  • Offer a secure base for caregivers to support their child
  • Co-pilot through storms
  • Minimise the need for emotional exclusion (defensive processing)
  • Let in, and to let go, of painful emotion so that they can continue to grow as their child’s haven of security

“So long as there is active interchange between ourselves and the external world, either in thought or in action, our subjective experience is not one of depression: hope, fear, anger, satisfaction, frustration, or any combination of these may be experienced.  It is when inter-change has ceased that depression occurs.” (John Bowlby: On Grief)6

 

 

The Model

The purpose of this project is to develop a new model of care, based on the ATP Generation 3 Attachment Studies program, specially tailored to supporting parents support their children and young people (0-18 years) through diagnosis and treatment of a life-limiting or palliative condition.

1. A Safe Haven

The first aim of the Centre is to create a safe holding environment for parents, children and young people which provides:

  • A place of acceptance
  • A place for safe self-expression
  • A place of resonance with others
  • A place of connection with nature
  • A place of nurturance of the physical body
  • The kitchen table – the heart of the Centre – will be a place for parents to meet other parents and simply take some time out with a cup of tea.

2. A Secure Base

The second aim is to encourage caregivers, children and young people to live full, rich and meaningful lives by:

  • Supporting the pursuit of life ambitions
  • Encouraging self-expression through the Arts/Music
  • Deepening connections with self, others and the world
  • Deepening connections to the natural world
  • Developing mindful acceptance
  • Supporting value-based living
  • Understanding that life is inherently uncertain for everyone

3. Practical Support

The Centre will also be a place of practical support including:

  • Managing stress – learning relaxation skills
  • Exercise – such as yoga, tai chi and walking
  • Advice about benefits – money and benefits individuals may be entitled to
  • Eating well – learn about eating a healthy, balanced diet
  • Professional staff – support for parents and young people
  • Information about palliative care – expert staff to provide information and answer questions
  • Looking good – grooming support (hair & makeup) for those who don’t have time to “care for themselves”

The Build

Maggie Centres

The first Maggie Centre opened in 1996 and was the idea of cancer patient Maggie Keswick Jencks. Today there are 20 Maggie Centres operating in the UK, a further 6 currently being built and two in Asia (Japan and Hong Kong).

  • Maggie centres are designed – pro bono – by leading architects.
  • Each Centre is located within close proximity to a hospital where patients receive care and surrounded by nature.
  • Centres are designed to be uplifting places to visit – full of light and open space.
  • The “kitchen table” is a key aspect of the design, providing a place to sit with others who are in a similar situation, talking and sharing over a coffee.
  • Centres provide free practical, emotional and social support

Young Maggie

The purpose is to adapt the Maggie Centre design principles to create a unique built environment within which parents and caregivers can recharge (safe haven) and be encouraged and inspired to go back into their daily lives (secure base) with greater strength and knowledge to support not only their unwell child but to strengthen the bonds within their families.

 

Connection with place and the community

1. Integrated in nature

  • The physical setting
  • Nature is prioritised as a primary expression. It is visible throughout the site, through vegetation, material and texture.
  • Nature is revitalising, and therefore resilient connections between building and nature should be fostered.

2. Public realm

  • The social setting
  • Public realm represents a socially vibrant space, inviting the texture of humanity throughout the building.
  • It provides a incentive to visit the space, a reason to stay, and the opportunity to casually talk about healthcare.

3. Spatial transitions

  • A garden experience
  • A focus on the continued gesture of nature throughout the building,
  • visible from the most private of spaces, it extends to the public realm and reaches out to the street.

4. Arrival and identity

  • The entry experience is an interaction with nature, not built form.
  • The visibility of nature from the street provides the sense of address.
  • A sense of ‘place’ and identity is based on the spatial qualities created by the building and nature collectively, and the individuality of the combined expression.

5. Natural circulation

  • An intricate organic internal movement network enhances the experience of nature.
  • Moments of prospect (to observe nature) and moments of refuge (healing and personal scale)
  • Created in an organic way in the ‘spaces between.’

6. Community gathering

  • Informal plaza – bbq and games area, or just some natural elements to sit and play on.
  • Support easy use and accessibility – opportunities for rest and recharging, and amenity functions can be located here.
  • The area becomes a place to explore, learn, and be involved – a destination is not required.

 

The Advisory Group

MEDICAL/PSYCHOLOGY

  • Dr Catherine Olsson (Bauld) (Psychology, Department of Paediatrics, The University of Melbourne, Australia)
  • Professor Vicki Anderson (Theme Director, Critical Care and Neurosciences, Murdoch Children’s Research Institute, Australia)
  • Professor Glenn Bowes (Associate Dean Advancement, Melbourne Medical School, The University of Melbourne, Australia)
  • Professor David Coghill (Deputy Director, Department of Paediatrics, The University of Melbourne, Australia)
  • Associate Professor Michelle Telfer (Head of Department, Adolescent Medicine, Melbourne Royal Children’s Hospital, Australia)
  • Ms Sarah Connolly (Head of Social Work, Melbourne Royal Children’s Hospital, Australia)
  • Professor Catherine Crock AM (Director, HUSH Foundation, Deakin Centre for Social and Early Emotional Development, Australia)
  • Professor Jenn McIntosh AM (Attachment Studies Senior Advisor, Deakin Centre for Social and Early Emotional Development, Australia)
  • Professor Craig Olsson (Research and Evaluation Senior Advisor, Deakin Centre for Social and Early Emotional Development, Australia)

ARCHITECTURE

  • Christon Batey-Smith (Director, DesignInc, Melbourne Australia)
  • Associate Professor Richard Tucker (Architecture, School of Architecture and Building Environment, Deakin University, Geelong Australia)
  • Hedyeh Gaminiesfahani (PhD Candidate, Architecture, Deakin University, Geelong, Australia)

References

  1. Brehaut JC, Kohen DE, Garner RE, et al. Health among caregivers of children with health problems: findings from a Canadian population-based study. Am J Public Health 2009; 99(7): 1254–1262.
  2. Remedios C, Willenberg L, Zordan R, et al. A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliat Med 2015; 29(3): 223–230.
  3. Li J, Precht DH, Mortensen PB, et al. Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 2003; 361(9355): 363–367
  4. Muscara F, McCarthy M, Woolf C, Hearps S, Burke K, Anderson V (2015). Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting. European Psychiatry 2015; 30: 555-561.
  5. Collins A, Hennessy-Anderson N, Hosking, Hynson J, Remedios C, Thomas (2016). Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliative Medicine, 30(10): 950-959.
  6. Bowlby J. Processes of mourning. International Journal of Psychoanalysis 1961; 42: 317-339