The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings: A descriptive phenomenological study

Highlights

• UK health policy is directing care away from hospitals, into community settings.

• We examined families’ experiences of paediatric outpatient care in hospital and community.

• Outpatient care ‘closer to home’ means more than just location and proximity.

• Community-based outpatient clinics facilitate a sense of ‘at-homeness’ for families.

Abstract

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld.

Introduction

Part of the vision of the UK National Service Framework for Children and Young People (2004) was to ensure that young people who are ill receive timely, high quality and effective care as close to home as possible. This was presented in policy documents as a way of improving access to specialist healthcare, increasing patient satisfaction and relieving demand on hospital services (DH, 2006). Many evaluations of Care Closer to Home (CCTH) however, focus on adult health services (Bowling et al., 1997, Black et al., 1997, Bond et al., 2000, Bowling and Bond, 2001, Sibbald et al., 2007, Sibbald et al., 2008) which may not be transferable to the provision of care for children and young people. Studies specifically evaluating the movement of paediatric healthcare into community settings are few, particularly those exploring outpatient clinics from the perspectives of parents and patients.

A mixed methods evaluation of service models providing paediatric CCTH focusing on preventing inpatient admission and reducing length of stay in hospital, found that CCTH delivers similar clinical outcomes for children, at no extra cost to families (Parker et al., 2011). Although this research offers a valuable contribution to the under-developed evidence-base for paediatric CCTH, its emphasis on ‘inpatient’ care delivered at home fails to address gaps in the literature regarding alternative settings for paediatric outpatient care. Moreover, only one child was recruited for the qualitative arm of the study; hence the views and experiences of young people on receiving CCTH remain largely unknown. The paucity of evidence describing or evaluating community-based paediatric outpatient clinics could be explained by the ‘low profile’ outpatient services have in comparison to other areas of clinical practice (Dodd and Newton, 2001) and the under-representation of children and young people in the literature more generally (La Valle et al., 2012). One study which has explored the provision of consultant-led paediatric outreach clinics (Spencer, 1993) reported that such models could improve access, while “facilitating effective patient management and clinical decision making particularly in deprived areas where the need is greatest” (p. 500).

Despite the spatial nature of UK policy initiatives recommending specialist healthcare be provided closer to patients’ homes, reforms have proceeded with little regard for the location of services, or people’s experiences of those locations. Moreover, there have been few attempts to systematically investigate those aspects of place which matter most in healthcare (Poland et al., 2005). Subsequently, the notion of ‘place’ has been neglected in many health service evaluations, which have instead opted to focus on the philosophy of care (Moore et al., 2013). Shifting the place of healthcare delivery from hospital to the community is likely to affect service use, patient experience and professional practice because ‘place’ is increasingly understood to hold complex, shared and unique meanings (Casey, 2001, Cresswell, 2009). For example, a study of health professionals’ views on providing paediatric CCTH found that place and professional identity were intimately related, with implicit assumptions made about where high quality of care and clinical expertise are located (Heath et al., 2012). Understanding the place of care and its ascribed meanings is therefore imperative to understanding the impact of health service de-centralisation on families and staff (Kearns and Joseph, 1993).

Different disciplines have developed different theoretical perspectives on place. One strand of the literature has roots in phenomenological philosophy (Manzo, 2005). Phenomenology is the study of human experience with the aim of examining and describing events, meanings and experiences as they are known in everyday life, but typically unnoticed beneath the level of conscious awareness (Husserl, 1936/1970, Seamon, 2000). The concept of a pre-reflective lived world or ‘lifeworld’ was developed by Husserl, emerging from his critique of modern science and philosophy. To investigate, analyse, and articulate nuances of the lifeworld, four dimensions or existential constituents have been emphasised: ‘lived space’ (spatiality); ‘lived time’ (temporality); ‘lived body’ (embodiment); and ‘lived other’ (inter-subjectivity). These dimensions attend to the experiential nature of how time, space, body and the social world are actively lived and given meaning beyond attempts at objectification or measurement. For a more detailed explanation of lifeworld theory, see Merleau-Ponty (1962), Todres et al. (2009) and Svenaeus (2000).

It is from this lifeworld perspective that phenomenologists move away from the objectification of place (i.e. interpreting place as an objective environment outside of experiencers) (Million, 1996), towards a rich understanding of person-place intimacy that escapes any subject-object dichotomy. Much of this work builds on Husserl’s notion of intentionality whereby consciousness is always consciousness of something and Heidegger’s notion of ‘dwelling’ as a particular way of being, where people are inseparable from the world, and thus all knowledge and meaning is embedded and emplaced within it (Seamon, 2000). In the 1970s phenomenological geographers (e.g. Tuan, 1977, Relph, 1976, Seamon, 1979) directed attention towards the everyday, taken-for-granted nature of place and its significance as a feature of human life (Seamon and Sowers, 2008).

As a result empirical studies have begun to consider healthcare settings as more than their physical location and material environment. For example, research exploring the provision of hospital care in patients’ homes demonstrates that the experience of ‘homeliness’ can be disturbed by medical technologies and healthcare professionals (Angus et al., 2005, Moore et al., 2010, Lindahl and Lindblad, 2011), and that the meaning of home can change over the course of illness, from a therapeutic to a non-therapeutic place (Donovan and Williams, 2007). The therapeutic nature of an environment is therefore argued to be dependent on a person’s “physical, psychological and social meanings of place” (Martin et al., 2005, p. 1893). This finding is supported in a study of older people’s experiences of hospice day care (Moore et al., 2013), demonstrating that within the context of health and illness, individuals purposefully re-construct places as therapeutic, in order to achieve a sense of ‘homelikeness’ within themselves (Svenaeus, 2001).

Despite increasing conceptualisations of place as “as an operational ‘living’ construct” (Kearns and Moon, 2002, p. 609), there remains a dearth of knowledge regarding how place contributes to healthcare experience and how healthcare contributes to place experience (Kearns and Joseph, 1993, Williams, 1998). This is particularly the case for paediatrics. Moreover, while patients’ direct experiences of care are recognised as a unique and valuable source of information that should be positioned at the heart of service transformations (National Institute For Health And Care Excellence, 2012), evidence for the systematic inclusion of young people’s experiences in service improvements is lacking (Hargreaves and Viner, 2012, La Valle et al., 2012). By enhancing understanding of the meanings that places hold for patients and parents, it may be possible to understand why families experience CCTH as they do. This information could be used to develop acceptable and effective CCTH services for children and young people.

As part of a wider programme of research, the aim of this study was to describe paediatric outpatient care as experienced by patients and parents, focusing on how the place of care delivery impacted on the experience of care. The study was carried out in collaboration with a UK specialist children’s hospital, and formed part of an evaluation of its consultant-led General Paediatric outpatient clinics delivered in community settings; one in a family doctors’ health centre located 5.3 km from the hospital, the second in a ‘Sure Start’ children’s centre providing a range of support services for families (e.g. childcare, early education, financial advice) and located 9.5 km from the hospital. Other components of the evaluation included: studies of clinic effectiveness and efficiency; staff views on paediatric CCTH (Heath et al., 2012); an investigation of factors associated with non-attendance at paediatric outpatient appointments (Cameron et al., 2013).