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Does using a hospital bed have an impact on the meaning of home?
British Journal of Community Nursing
Abstract
During the end of life care of patients with cancer, hospital beds are often introduced into the home setting. The impact of this intervention is not known. Clinical experience of the phenomena indicates that two components may be relevant in this scenario - the preference for home care and the meaning of home. A review of related literature revealed that there is a high preference for being at home at the end of life and that 'home' has multiple meanings for people such as familiarity, control and biography. The meaning of home has implications for community nursing practice.
... During the palliative phase of life patients often require a hospital bed for expert care to be delivered. However, this has a psychological impact on patients and couples involved-both positive and negative (Bowden and Bliss, 2008). The introduction of a hospital bed into the home of a dying cancer patient living with their partner is often advised but the impact of this intervention is poorly understood. ...
... Interventions including the introduction of equipment can pose many challenges to patients and families' meaning of home (Bowden and Bliss, 2008), for example, in terms ...
... It is also possible that hospital beds are offered and introduced when they are not strictly necessary, either in terms of clinical need for the patient or in terms of health and safety requirements for nursing and care staff. Apart from the financial ramifications, the unnecessary introduction of a hospital bed has major implications on the meaning of home for patients and couples (Bowden and Bliss, 2008) as well as on their intimacy expression and how they spend their last days and nights together. A greater understanding of this intervention, its effects, its benefits and psychosocial costs could assist in developing a more holistic assessment tool for hospital bed use. ...
During end of life care for patients with cancer, hospital beds are often introduced into the home setting. The impact of this intervention on sexuality and intimacy expression for couples is not known. A review of related literature revealed that intimacy expression at the end of life is important for patients but is generally regarded by nurses as a difficult and complex area of care. The relationship between sexuality expression and the provision of a hospital bed has implications for nursing practice.
... Studies of palliative care often include the statement 'Most patients want to die at home' [1][2][3][4][5][6][7][8][9], leading to an understanding of home death as the optimal goal for palliative patients [3,10,11]. Thus, a high proportion of home deaths in a country is often regarded as a sign of the success of the palliative care provided [2,12]. ...
... Studies of palliative care often include the statement 'Most patients want to die at home' [1][2][3][4][5][6][7][8][9], leading to an understanding of home death as the optimal goal for palliative patients [3,10,11]. Thus, a high proportion of home deaths in a country is often regarded as a sign of the success of the palliative care provided [2,12]. Previous studies show that home is the preferred place of death, yet there is also great diversity of preferences [13][14][15]. ...
Background
‘Most patients want to die at home’ is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals’ experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway.
Methods
This is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically.
Results
Health care professionals did their utmost to fulfil patients’ wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers’ important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include ‘home place’ in the form of local health care facilities.
Conclusions
Providing palliative care in patients’ homes is professionally and ethically challenging, and health care professionals’ dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses’ pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.
... Recent studies have reported that they view home-like environments as supporting their spiritual expression and social interaction and allowing privacy and compassionate activities by staff. 6,7 On the other hand, the benefits of spending the end of life in the hospital reportedly included ''feeling cared for and secure,'' ''receiving support to manage health,'' ''reassurance for family,'' and ''comfort,'' and the benefits of spending time in the hospital were reported to extend beyond receiving treatment. 8,9 It is useful to clarify the perceptions of the concepts of ''inpatient hospice'' and ''home'' in the end-of-life care setting in Japan to consider supportive measures in each setting. ...
... The questionnaire was developed by the authors based on a literature review [1][2][3][4][5][6][7][8][9] and discussion among the authors. The face validity of the questionnaire was confirmed through a pilot test with five bereaved family members and five physicians. ...
Background: During end-of-life care, the place in which the patients spend time influences their quality of life.
Objective: To clarify what it means to spend last days at home and in inpatient hospice.
Design: This study was a part of a nationwide multicenter questionnaire survey of bereaved family members of cancer patients evaluating the quality of end-of-life care in Japan.
Setting/Subjects: A nationwide questionnaire survey was conducted with 779 family members of cancer patients who had died at inpatient hospices. We asked participants about the perceived benefits of spending last days at home and inpatient hospice during the patient's last days.
Measurements: A nationwide questionnaire.
Results: Of participants, 37.6% (n = 185 [95% confidence interval, 33%–42%]) felt that the inpatient hospice was like a home. The family members who reported that the inpatient hospice felt like home significantly tended to report high satisfaction with the level of care (p < 0.01). Factors that the participants perceived as benefits of the inpatient hospice were: “If anything changes, as health care professionals are easily available, he/she can handle it” (88.1%), “he/she is reassured” (78.4%), and “he/she is safe” (72.7%). On the contrary, factors that they perceived as benefits of home were: “He/she can do what he/she wants to do without worrying about the eye of other people” (44.1%), “he/she can relax” (43.5%), and “he/she is free” (42.0%).
Conclusions: Spending the last days of life in either an inpatient hospice or at home has specific benefits. The place a patient spends his/her end-of-life days should be based on patient and family values.
... Несмотря на свою функциональную целесообразность, эти изменения часто становятся причиной ухудшения психологического состояния больного и его отказа пользоваться такой средой: медицинское оснащение становится символом подорванного здоровья, а закрытые окна и двери и стерильность дома -напоминанием о собственной уязвимости. Тем не менее вынужденная трансформация пространства дома в целом рассматривается как позитивный фактор для становления идентичности болеющего и переосмысления своих возможностей и ограничений и позволяет человеку быть более или менее автономным (Bowden, Bliss, 2008). ...
В монографии продолжается обсуждение темы взаимодействия человека с его домом – почему дом и его обитатели похожи друг на друга и что это им дает? В серии эмпирических исследований показано, какие стратегии совладания с трудными ситуациями усиливаются, если дом дружествен обитателям; как его качества сопряжены с моральными мотивами, отношением к справедливости и переживанием благодарности; как влияют друг на друга уютный дом и семейная атмосфера; каким видится дом извне и что мотивирует обитателей его покидать; наконец, как актуализируется поддержка домашней среды в трудных жизненных ситуациях усыновления ребенка, развода, умирания. Книга написана ясным, живым языком, снабжена большим количеством иллюстраций и глоссарием.
Издание может быть рекомендовано специалистам в области психологии личности, семейной и прикладной психологии, антропологии, культурологии, дизайна и архитектуры, студентам, изучающим психологию,
и широкому кругу читателей.
... 6 However, healthcare research around the meaning of home for dying patients has only recently emerged. 7 While attempts are often made to create a 'more homely' physical environment for patients within institutional settings, such as palliative care units, nursing homes or children's hospitals, studies of spaces where dying people find themselves are limited. Emerging research has shown that older people view a homely environment as one that supports spiritual expression and social interaction but allows privacy and access to caring activities of staff. ...
Background
While ‘home’ is cited most frequently as being the preferred place of death, most people will die in institutions. Yet, the meaning and significance of home for people nearing the end of life has not been fully explored.
Aim
The aim of this article is to critically examine the meaning of home for dying patients and their families.
Design
The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period.
Setting/participants
Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital. Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians (n = 36) caring for them. Patients and families were ‘followed’ through care settings including the palliative care unit and into their own homes.
Results
Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged concerning this relationship: ‘No place like home’; ‘Safety, home and the hospital’; ‘Hospital “becomes” home’; ‘Home “becomes” hospital’; ‘Hospital and “connections with home”’; and ‘The built environment’.
Conclusion
Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.
... To date, home care research has focused heavily on issues around caregiver burden, privacy in the home, access and use of health care services, decisions to remain in the home, and elements that affect quality of home care service (such as relationships between home care nurses and clients, the nature of the home care process, and the impact of home care services on family dynamics and coping) (Cho, 2005 ;Cooper & Urquhart, 2005 ;Devlin & McIlfatrick, 2010 ;Gomes & Higginson, 2006 ;Jepson, McCorkle, Adler, Nuamah, & Lusk, 1999 ;Magnusson, Severinsson, & Lützén, 2002 ;Piat, Ricard, Sabetti, & Beauvais, 2007 ;Santos Salas, 2006 ). Research focusing on the home care experience and its meaning for clients and families has primarily centred on elements of the palliative home care experience, such as the meaning of hope, quality of life, and the meaning of home itself (Benzin, Norberg, & Saveman, 2001 ;Bowden & Bliss, 2008 ;Melin-Johansson, Ödling, Axelsson, & Danielson, 2008 ;Williams, 2004 ). However, understanding the experience of palliation in home care is only one of many important components in understanding the broader home care experience. ...
RÉSUMÉ
Le besoin de soins à domicile s'accroît au Canada, mais on sait peu de l'expérience de soins à domicile de clients et de leurs familles. Découvrir le sens de l'expérience de soins à domicile est une étape importante vers le développement de la compréhension et la sensibilisation du public. Nous avons exploré les expériences de soins à domicile en utilisant des méthodes axées sur les arts et des entretiens individuels avec 11 participants (un client et 10 aidants naturels). Les participants ont débattu les nombreuses façons de soins à domicile et de la famille et comment ceux-ci ont affecté leur vie, comment ils ont fait face à ces effets, leurs expériences dans les hôpitaux ou les résidences-services, et les aspects de l'expérience de soins à domicile qu'ils aimaient ou n'aimaient pas. Les participants ont convenu que les soins à domicile ont facilité une meilleure qualité de vie pour les familles et les clients, bien qu'ils reconnaissent certains défis avec eux. Les résultats artistiques produites par les participants ont facilité le dialogue de l'entrevue et ont favorisé la compréhension des thèmes clés de la recherche par l'équipe.
... A qualitative study by Bowden and Bliss (2008) found that the introduction of a hospital bed had an impact upon the meaning of 'home' for couples. Their literature review was unable to identify any research data that described the impact of a hospital bed on intimacy or sexual expression (Bowden and Bliss 2009). ...
Introduction: Sexuality is a holistic concept that involves more than the sexual act. Despite being a quality of life domain that promotes meaningful existence, it is an
aspect of life that is often avoided by health care practitioners.
Method: In this Heideggerian phenomenological study, conversational interviews
were conducted with 13 people with motor neurone disease, and 10 of their partners,
in order to understand their experiences of sexuality and intimacy.
Findings: The findings provide evidence for the value of touch in people’s lives
and shed light upon the impact that assistive equipment has on intimacy, sexual
expression and maintaining emotional and physical connection between couples.
None of the people interviewed had previously been given the opportunity to
discuss these issues with their occupational therapist.
Conclusion: There is a place in occupational therapy practice for discussing the
value of emotional and physical connection for individuals in the context of any
equipment provided.
... The home environment not only designates a dwelling but also represents a multitude of meanings, such as personal identity, security and privacy and the centre of the everyday experience of space, time and social life (Williams 2004, Bowden & Bliss 2008. The home can be a place where one is comfortable and at ease because of the habitual nature of routines and physical arrangement (Case 1996, Williams 2004, Raunkiaer 2007) but could also be the scene of inequitable relations that may be expressed as psychological tension and violence (Saveman et al. 1996, Bowlby et al. 1997, Erlingsson et al. 2006, Olive 2007, McPhedran 2009). ...
The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background. Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image.
Qualitative descriptive study.
Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description. Result. Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space.
The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home.
This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.
Objective
To inform clinicians’ equipment recommendations by characterizing the experiences, skin integrity, and interface pressures in a series of recently discharged individuals with spinal cord injury (SCI) who chose to use an alternative adjustable bed system at home rather than a standard of care hospital bed with mattress overlay.
Design
Mixed methods, observational case series.
Setting
Community based.
Methods
Four individuals with cervical SCIs and one partner of a participant with SCI completed interviews about their experiences using an alternative adjustable bed system and their skin health. Participants also underwent pressure mapping on their alternative adjustable bed system and on a standard of care hospital bed with mattress overlay. Interview themes were identified using a consensus qualitative approach. Pressure readings at the sacrum and ischial tuberosities in supine and at the greater trochanter in side lying were compared between surfaces.
Outcome measures
Semi-structured interview, questionnaire, and pressure mapping.
Results
All participants reported positive experiences utilizing an alternative adjustable bed system and no episodes of bed-related skin breakdown. Reasons for wanting an alternative adjustable bed included a greater sense of normalcy and larger size. Participants perceived their alternative beds to be comfortable, and to have features that aided their function and assisted their caregivers. Features used included head of bed elevation, height elevation, and bed rails. All participants had clinically acceptable pressure mapping patterns on the alternative adjustable bed system.
Conclusion
An adjustable bed system, combined with other skin protection strategies, may be appropriate for certain individuals with spinal cord injury.
The purpose of this study was to explore how the identity of people with advanced cancer is influenced by their experiences of living at home. A total of 28 in-depth interviews were conducted with 22 people with advanced cancer and four spouses. Grounded theory guided the collection and analysis of data. Home tours and associated field notes augmented the interview data. The analysis revealed that support of participants' identity was reflected in their abilities to live and occupy the home during daily activities, and in the ways the home and objects functioned as referents to themselves and their past. Threats to their identity ensued as the home environment became unmanageable during daily activities and as homecare professionals and assistive devices entered the home. By supporting people with advanced cancer in maintaining daily activities in the home and reducing changes in the home caused by homecare it is possible to reduce loss of identity.
This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives.
The aim of this article is to describe one aspect of the lived experience of well-being that shows two interconnected components of being at home: the way people feel about the places and spaces in which they live and the way people feel about themselves. The results of this hermeneutic phenomenological research are woven together with results from research on home care drawn from the literature, thereby showing that one body of research can inform the other. Drawing from this evidence base, it is apparent that practitioners who provide care in the home according to a narrow view of what “home” entails run the risk of undermining the well-being experience of the recipient of care and of his or her family.
This descriptive, explorative study sought to identify the occupational-related health experiences of community nurses in their workday within rural North West Tasmania. Tasmania is one of eight states and territories that form Australia. The findings indicate the majority of community nurses consider their health average or better, although 30% reported being overweight; 5% reported smoking; 60% reported feeling tense, anxious or depressed sometimes during the week. In the 12 months prior to survey 48% of participants had experienced a work-related injury or illness. At least two thirds of participants spent an average of 1.5 hours teaching nursing students and 2 hours teaching medical students, per week. Hazards (needlestick injury, items obstructing passageways, debris within homes), dogs and use of mobile telephones were regularly associated with weekly work incidents. Interestingly, more time was spent in a day on documentation than with clients or professional development.
To assess the preference of terminally ill patients with cancer for their place of final care.
Prospective study of randomly selected patients with cancer from hospital and the community who were expected to die within a year. Patients expected to live less than two months were interviewed at two week intervals; otherwise patients were interviewed monthly. Their main carer was interviewed three months after the patient's death.
District general hospital, hospices, and patients' homes.
Stated preferred place of final care; actual place of death; reason for final hospital admission for those in hospital; community care provision required for home care.
Of 98 patients approached, 84 (86%) agreed to be interviewed, of whom 70 (83%) died during the study and 59 (84%) stated a preferred place of final care: 34 (58%) wished to die at home given existing circumstances, 12 (20%) in hospital, 12 (20%) in a hospice, and one (2%) elsewhere. Their own home was the preferred place of care for 17 (94%) of the patients who died there, whereas of the 32 patients who died in hospital 22 (69%) had stated a preference to die elsewhere. Had circumstances been more favourable 67% (41) of patients would have preferred to die at home, 16% (10) in hospital, and 15% (9) in hospice.
With a limited increase in community care 50% more patients with cancer could be supported to die at home, as they and their carers would prefer.
This prospective study was designed to assess whether patients with terminal cancer, and their relatives, find that competent home care sufficiently maintains comfort and helps adjustment. A random sample from a home care service with readily available beds comprised 77 adults and their relatives who were able and willing to be interviewed separately each week. They were asked the nature and degree of current problems and regular assessments were made of some qualities of life including mood, attitude to the condition, perceived help and preferred place of care. These patients had 90% of their care at home; 29% died at home but 30% were finally admitted for one to three days and 41 % for longer.
In the final eight weeks, tolerable physical symptoms were volunteered by a mean of 63% each week and psychological symptoms by 17%. Some distress was felt by 11 % of patients; this was usually from pain, depression, dyspnoea, anxiety or weakness, and generally did not persist. Relatives suffered grief, strain or their own ill health. Patients' and relatives' reports generally matched except for the strain on carers.
Regular assessments found that 64% of patients thought death certain or probable, and 27% thought it possible. Various proportions coped by optimism, fighting their disease, partial suppression or denial, but 50% reached positive acceptance. Relatives were more aware and accepting. About three-quarters of patients and half the relatives were composed, often enjoying life. Serious depression affected 5% of patients and anxiety 4%, but relatives' manifest depression in the later stages increased to 17% and anxiety to 14%. Many consciously disguised their feelings. Treatment was usually praised but realistic preference for home care fell steadily from 100% to 54% of patients and 45% of relatives. At follow-up most relatives approved of where patients had received care and died.
Although studies have found that 50–70% of cancer patients would prefer to die at home, there has been a trend towards the hospitalization of the dying in many countries. No study has attempted to analyse the changes in place of death in detail.
The aim was to analyse the 10-year trends in place of death of cancer patients, by region and by diagnosis, within England.
To do this, data on the place of death and patients' characteristics were derived from death registrations for all cancer deaths between the years 1985–94. We examined trends in the place of death for the whole of England, for each region separately and for the main cancer diagnoses.
The results show that there were over 1.3 million death registrations from cancer during the 10 years. The mean age increased over the period from 69.9 years in 1985, to 71.3 years in 1994. The percentage who died in a UK National Health Service (NHS) hospital or nursing home fell gradually from 58% (1985) to 47.3% (1994), while the percentage who died in non-NHS hospitals, nursing homes, hospices and communal establishments increased. The percentage who died at home fell slightly but steadily between 1985 and 1992 from 27% to 25.5% and since then increased slightly to 26.5% in 1994. The percentage of home deaths was lowest in the two Thames regions (less than 25%) and highest in the West Midlands, Anglia and Oxford (over 29%). These differentials were maintained across age groups and diagnoses. Older people and women were less likely to die at home than younger people and men. Significant trends showing an increase in home deaths were found in two regions: North Thames and South Thames. Patients with cancers of the lung, colorectum, respiratory organs, bone or connective tissue and lip, oral cavity and pharynx were more likely to die at home (over 29% in 1994) than patients with cancers of the breast (women, 25% in 1994) or the lymphatic or haematological system (16% in 1994).
It can be concluded that the trend towards a reducing home death rate from cancer in England appears to have halted, although this varies between regions. This has implications for primary care services. Although hospital is still the most common place of death from cancer, the percentage of cancer patients who die in hospital is reducing. The largest rise is in the increasing use of hospices and communal establishments, including residential and nursing homes. Given the ageing population, this trend is likely to continue.
Objectives: To explore the attitudes of older people towards home as a place of care when dying. Design: A two-phase qualitative study using focus groups and semi-structured interviews. Participants: Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. Results: Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a ‘burden’ to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of ‘strangers’ was regarded by some as intrusive and compromising the ideal of ‘home’. Discussion: Older people perceive factors they associate with ‘home’ as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a ‘good death’. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.
To determine the relative influence of different factors on place of death in patients with cancer.
Four electronic databases-Medline (1966-2004), PsycINFO (1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals.
We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence.
58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important.
The ne of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.
The place of final care for patients with terminal illness is influenced more by resource availability than patient choice. Resources are not consistently available across the UK to provide successful palliative home care for all those that require this facility. This paper surveys the literature on home care for terminal cancer patients and outlines proposals for a new initiative in Lancashire and South Cumbria to address this issue and improve palliative care services in the community.
In addition to our programme of work on the global development of hospice and palliative care, the International Observatory on End of Life Care also retains a strong interest in matters of policy and evaluation relating to the UK context. We report here on work in progress relating to the Preferred Place of Care instrument, which forms a key element in the UK Department of Health End of Life Initiative.
The home is often viewed as an unproblematic location in which new occupational roles, relationships and uses can be fitted. There has been a marked increase in home-based work, leisure and medical care. How these functions can be accommodated within houses designed for conventional domestic and household activities often remains unclear. Drawing on an in-depth study of teleworking (home-based computer working), this article explores the meaning and experience of real, symbolic and lived household space. The findings suggest that households strive to retain the conventional look, feel and function of the home even when occupants are required to establish new roles and occupations. This resistance to spatial change occurs as a deliberate and rational choice.
The article is theoretical in content and does not directly explore the experiences of disabled people. It provides a sociological perspective of the home, which is often missing from medical and rehabilitation literature. It challenges a number of taken-for-granted notions about the social construction of the home, which will be of interest to therapists whose work often involves the incorporation of new roles and daily activities into the home.
Accessible housing is crucial both to enable the implementation of community care and to assist in giving disabled people equal rights to independent living. In order to meet these demands, occupational therapists often play a key role in recommending adaptations to the home environment. Although there can be important benefits in this process, the meaning of home to the disabled person and his or her family can be overlooked and compromised by the changes that occur to it.
It is suggested that in order to redress this balance, the social model of disability should be applied to the assessment process. This would result in a more holistic view of the environmental barriers faced by the disabled person within his or her home and a deeper understanding of the wider meaning of home to the disabled person and the family. The provision of adaptable housing, such as Lifetime homes, is also considered as a way of minimising the need for home adaptations in the longer term. A broader role for the occupational therapist within the framework of the social model is discussed.
In recent years there has been a proliferation of writing on the meaning of home within the disciplines of sociology, anthropology, psychology, human geography, history, architecture and philosophy. Although many researchers now understand home as a multidimensional concept and acknowledge the presence of and need for multidisciplinary research in the field, there has been little sustained reflection and critique of the multidisciplinary field of home research and the diverse, even contradictory meanings of this term. This paper brings together and examines the dominant and recurring ideas about home represented in the relevant theoretical and empirical literature. It raises the question whether or not home is (a) place(s), (a) space(s), feeling(s), practices, and/or an active state of state of being in the world? Home is variously described in the literature as conflated with or related to house, family, haven, self, gender, and journeying. Many authors also consider notions of being-at-home, creating or making home and the ideal home. In an effort to facilitate interdisciplinary conversations about the meaning and experience of home each of these themes are briefly considered in this critical literature review.
This article addresses three issues: (1) what does a home mean to a person? (2) what happens when the patients are rehabilitated in the home? and (3) can the home become a workplace for a professional?
A literature review based on research literature and on the author's research project in the north of Sweden 'Rehabilitation in a home setting--ethical, psychological and occupational therapeutic aspects,.
For most people, the home is an important and meaningful place, where ultimate goals can be cultivated, sheltered from the intrusions of public life. In connection with chronic illness, functional impairment and rehabilitation in the home, the individual will often lose the home as a private territory and much of his/her own autonomy. No longer is the home an existential centre for the family, but a place where many unfamiliar people come and go. Rehabilitation in a home setting means, furthermore, that the public sector is moved into the home, and the home has to function as a public workplace, ensuring a good working environment.
The question for the future is: can the combination of home and public workplace work at all? More research is needed to answer this question. Prior documented experiences show that it is difficult.
Nurses often hear clients and their families express a strong desire to "go home" from the hospital or nursing home. The purpose of this article is to explore what they mean when they make this request and how this meaning of home can shape the practice of home and hospice care. To do this, definitions of home and a health-at-home model are described and applied through a case study.
As the ageing population increases, a major dilemma for palliative care service provision in the United Kingdom over the next century will be where patients are cared for. Historically, palliative care has been provided by hospices, but it is now recognized that patients wish to be cared for and die at home.
End-of-life care strives to honor terminally ill patients' preferences regarding the way of dying. Scholars defined one domain of quality of dying and death as dying at the place of one's choice. Despite efforts over more than two decades and more than 40 studies to investigate the influencing factors associated with the place of death for terminally ill patients with cancer, there is a notable lack of empirical data examining the reasons why terminally ill patients with cancer choose a specific setting as their preferred place of death. An exploratory and descriptive study was conducted to explore the preferences of terminally ill patients with cancer for the place of death, to identify the reasons for selecting a preferred place of death, and to examine the importance of dying at a place one prefers. A convenience sample of 180 terminally ill patients with cancer was recruited from four tertiary care hospitals and two home care programs in Connecticut. Nearly 90% of the subjects preferred to die at home. Quality of life, availability and ability of family caregivers, concerns of being a burden to others, long-standing relationships with healthcare providers, and quality of healthcare were the major considerations in decision making regarding the place of death. Terminally ill patients with cancer acknowledged dying at their preferred place of death as highly important. Effective nursing interventions need developing to facilitate death at a place that is in accord with dying patients' preferences.
Changes in health-care service delivery have resulted in the transfer of care from formal spaces, such as hospitals and institutions, towards informal settings, such as home. As the home environment not only designates a dwelling but also represents a multitude of meanings such as personal identity, security and privacy that may vary according to the socio-economic and social demographic variables, it presents a complex site for study. This article uses two contrasting in-depth qualitative case studies to refine the application of the Health at Home Model in Home Healthcare Practice (HHMHHCP) (Roush and Cox, 2000). An addition to the original three dimensions of the model (home as familiar, home as centre and home as protector) is suggested--home as locator. Research directions to further understand the role of caregiving in contributing to the experience and meaning of the home environment by informal caregivers are discussed.
Research on the distribution of cancer deaths by setting-hospital, hospice, home, other--is longstanding, but has been given fresh impetus in the UK by policy commitments to increase the proportion of deaths occurring in patients' homes. Studies of factors associated with the location of cancer deaths fall into two main categories: geo-epidemiological interrogations of routinely collected death registration data, and prospective and retrospective cohort studies of terminally ill cancer patients. This paper summarises the findings of these studies and considers the place of death factors that are generated in semi-structured interviews with 15 palliative care service providers working in the Morecambe Bay area of north-west England. These qualitative data are found not only to confirm and considerably enrich understanding of known factors, but also to bring new factors into view. New factors can be grouped under the headings: service infrastructure, patient and carer attitudes, and cultures of practice. Such an approach provides useful information for policy makers and practitioners in palliative care.
It is commonly written that more patients wish to die at home than currently achieve this. However, the evidence for preferences for place of terminal care and death has not been systematically reviewed.
To carry out a systematic literature review of the preferences for place of care and death among advanced cancer patients.
Studies were identified using systematic database searches of MEDLINE (1966-1999), PsychLit (1974-1999), and Bath Information Data Service (BIDS) (1981-1999). Studies were assessed and data extracted and synthesises following the NHS Centre for Reviews and Dissemination guidelines, grading studies according to design and rigor of methods. Studies of preferences in the general population and of groups including cancer patients and/or their caregivers were included.
Eighteen studies determining preferences in either the general population or groups including cancer patients were identified. Views were obtained prospectively and retrospectively from patients, the general population, families, and professionals. Respondents indicated preferences for home death (range 49%-100%), except one study of patients in the care of a continuing care team in London where only 25%-29% of patients wanted a home death, and inpatient hospice was the most favored option. However, the response rate of this study was not known. Among the general public there was a higher preference for inpatient hospice care among in people with recent experience of a close friend or relative's death or dying. Where the views of patients, families, and professionals were compared, all respondents broadly agreed although patients expressed the strongest home preferences. Only 2 of the studies provided longitudinal data, and 9 of the 18 had major deficits in design or reporting, such as poor or unknown response rate, unclear or unsystematic methods of eliciting preferences or other sample or measurement bias. However, sensitivity analysis of only the more robust and larger studies did not alter the finding of a preference for home care at the end of life in over 50% of patients.
Home care is the most common preference, with inpatient hospice care as second preference in advanced illness. Meeting these preferences could be important outcomes for services. Study designs in this area need to be improved.
To explore what factors influence decisions around the place of care for terminally ill cancer patients in a rural area in West Highland, Scotland.
This was a descriptive, explorative, qualitative study using taped semistructured interviews.
A purposive sample of eight terminally ill cancer patients.
The determinants for the desired place of care were organized into three main themes: carer resource and support; past experiences with death; and communication of wishes. The study evidenced that individuals often changed their preferred place of care at the end of life as the need for care increased. Those involved in the study found a therapeutic and emotional benefit by being able to discuss end-of-life care in a safe and secure environment.
For many, the preference for place of care at the end of life was conditional on how the process of their disease advanced. It was not a clear and positive choice, but it did include the desire to be cared for in a place other than home. Carer availability and ability were influencing factors; however, decisions reflected the patient's perceptions of resources rather than those of the carer, even when the carer was available and able. The challenge to those who work with the terminally ill is to develop effective interventions to facilitate discourses around end-of-life care, and thereafter, where possible, to facilitate those preferences.