Experience of place for young adults under 65 years with complex disabilities moving into purpose-built residential care

Muenchberger, Heidi; Ehrlich, Carolyn; Kendall, Elizabeth; Vit, Marina

doi:10.1016/j.socscimed.2012.08.002

Cited by 19 publications

(11 citation statements)

References 32 publications

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“…In contrast to the reductionist approach that the studies reviewed above have followed in dealing with design as separate components, there are a few studies that adopt a more holistic synthesis. For example, Muenchberger, Ehrlich, Kendall, and Vit () highlight Gesler's (2003) and Williams' (2002) findings that environmental significance comprises multiple dimensions—built, natural, symbolic, social, identity, security, privacy, time. Gesler, Bell, Curtis, Hubbard, and Francis () report on the role of democratization, permissiveness, reality confrontation, communalism, interpersonal relationships, personal growth, and program structure in the rehabilitation process.…”

Section: Resultsmentioning

confidence: 99%

Design as a Rehabilitative Tool for People with Acquired Brain Injury: Mapping the Field

Smith

Macdonald

2015

Journal of Interior Design

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People live their lives in an ongoing relationship with the physical environment. In the following review, a range of factors which may influence the design and construction as well as the occupation of an environmental setting for people with acquired brain injury (ABI), are described. During a person's rehabilitation, the environment may support his or her protection, while simultaneously promoting independence and learning. In a discussion regarding the design of built environments for people with ABI, medical, or allied health perspectives usually dominate. To design settings that support these objectives, the designer perspectives, be they interior, architectural, or landscape, must be identified. Typically, designers and architects do not adopt a linear approach to creating environments, but rather they integrate what Nigel Cross calls a designerly way of knowing. A designer-stance may broaden possibilities while supporting the appropriate models of care or philosophy of rehabilitation. The aim of this review is to map and summarize the breadth of current literature that involves or could inform the design of facilities for people with ABI. Such a review is necessary to consolidate what is known, in order to build upon it. The overall aim is to inform design professionals of the breadth of considerations when designing for people with ABI. In addition, it will inform managers, carers and allied health professionals of current understandings. Conceptualizations from different disciplinary perspectives of designing for rehabilitation of people with ABI are discussed.

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Section: Resultsmentioning

confidence: 99%

Design as a Rehabilitative Tool for People with Acquired Brain Injury: Mapping the Field

Smith

Macdonald

2015

Journal of Interior Design

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“…There is little research or scholarship examining institutional placement and transfer for profoundly impaired young people who cannot assume adult social roles [14,15], with the exception of a growing body of work oriented towards moving children and young people out of institutions into the community [16-22]. Empirical research and policy reform point to the inadequacy of adult-oriented long-term care homes for younger adults, and have grounded calls for increased services to allow children to live in family homes and/or family-friendly group home settings [15,21,23,24].…”

Section: Discussionmentioning

confidence: 99%

“…Empirical research and policy reform point to the inadequacy of adult-oriented long-term care homes for younger adults, and have grounded calls for increased services to allow children to live in family homes and/or family-friendly group home settings [15,21,23,24]. …”

Section: Discussionmentioning

confidence: 99%

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The ‘placement’ of people with profound impairments across the lifespan: re-thinking age criteria

Gibson

King

Kingsnorth

et al. 2014

BMC Med

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BackgroundAdvances in lifesaving technologies and treatments make it possible for children with profound physical and cognitive impairments to survive into adulthood. Questions regarding how and where they should live are discussed rarely and, when they are, primarily focus on safety and/or containing costs. Since models of long-term care provision are age-based, children who reside in institutions are ‘discharged’ to adult facilities when they reach an arbitrary age. Such transfers may not be in the best interests of these young people or their families. Our aim in this debate is to highlight why age is a problematic criterion for placement decisions, with the goal of stimulating further research and inquiry.DiscussionTransfers from pediatric to adult institutions are driven primarily by funding arrangements and underpinned by stage-based theories of human development. Arguments supporting such transfers point to the value of communal living with same age peers, and engagement in age-appropriate activities. These goals are questionable for individuals who are minimally interactive and/or where equally worthy interactions are feasible in intergenerational settings. Instead their accommodation needs might more closely align with palliative care principles of supporting individuals and families to enjoy what they bring to each other’s lives and minimize suffering. Innovative models of ‘vertical care’ and ‘lifetime homes’, which enable continuous flexible services across the lifespan, are discussed as examples of alternative approaches requiring further debate and research.SummaryEntrenched funding and service models that require the transfer of profoundly impaired young people from pediatric to adult facilities need to be re-examined with considerations of best interests, needs, and preferences of individuals and their families. Questions of what constitutes a ‘good life’ for these individuals are tenacious and require further thought and research. Nevertheless, they need to be regarded as citizens of our human community deserving of a good life in whatever form that may take, in settings that enable them to flourish.

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“…Although prior research has explored paediatric to adult care transitions, very little is known about the transition experiences of young adults with complex care needs – especially those who have lived in a paediatric hospital for many years before moving to an adult community residence (Muenchberger et al . ; Simon et al . ).…”

Section: Introductionmentioning

confidence: 99%

A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences

Lindsay

Hoffman

2014

Child

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Experience of place for young adults under 65 years with complex disabilities moving into purpose-built residential care

Cited by 19 publications

References 32 publications

Design as a Rehabilitative Tool for People with Acquired Brain Injury: Mapping the Field

Design as a Rehabilitative Tool for People with Acquired Brain Injury: Mapping the Field

The ‘placement’ of people with profound impairments across the lifespan: re-thinking age criteria

A complex transition: lessons learned as three young adults with complex care needs transition from an inpatient paediatric hospital to adult community residences

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