Berit Lindahl

A meta-synthesis describing the relationships between patients, informal caregivers and health professionals in home-care settings.

AIMnThe present study describes, through a meta-synthesis, the relationship between patients, informal caregivers and health professionals involved in home care.nnnBACKGROUNDnToday, many people receive help from health care professionals in their homes with the consequence that, for many health care professionals, their working place is the patients homes. Research that addresses the dynamics in the caring relationship in home care seems to be rare.nnnDESIGNnA meta-synthesis is an integrated interpretation of qualitative research findings, which is more substantive than the results from each individual investigation.nnnMETHODnWe performed a systematic literature search regarding studies published during the period 1992-2005, using the search terms home nursing, professional and home health care. The included studies described relations in a home care context, between health professionals and patients or relations between health professionals, patients and their informal caregivers published in the same study.nnnRESULTSnThe findings showed that when professionals entered peoples home, the private area changed. The study presents an interpretation of the changed meanings of home as the place and space for professional care. We described the meanings of the relationship in two main themes with subthemes. The main themes are being there and home care as a co-creation. The understanding of relationships in home care is seen as the development of a professional friendship. This concept is reflected on through the writings of Aristotle and Alberoni.nnnCONCLUSIONnTo address these concerns, it is important that home care providers, recipients and their family members develop friendships. These friendships should be a part of any professional relationship.nnnRELEVANCE TO CLINICAL PRACTICEnWhen health professionals enter patients homes, they have to be aware of the risk of transgressing borders of privacy. In addition, devaluing patients or their informal caregivers knowledge and their opinions about the care is interpreted as an exercise of institutional power.

Moving between rooms--moving between life and death: nurses' experiences of caring for terminally ill patients in hospitals.

AIMnThis study describes the meanings of generalist registered nurses experiences of caring for palliative care patients on general wards in hospitals.nnnBACKGROUNDnEarlier research shows that work with patients in palliative care is demanding. More research concerning palliative care is undertaken in oncological care, in hospice and in home-care settings than in general wards. It is therefore important to examine the palliative care in the context of acute-care settings to discover more about this phenomenon, to understand the experiences of nurses in this situation and to develop patient care.nnnDESIGNnQualitative, descriptive and interpretive study.nnnMETHODnEight registered nurses in two different hospitals in Sweden were interviewed. The patients on these wards suffered from surgical and medical conditions, i.e. both curative and palliative care were administered. The interviews were analysed using a phenomenological hermeneutical approach inspired by Ricoeurs philosophy.nnnRESULTSnThe registered nurses experiences are presented as seven themes and a comprehensive, interpreted whole. This latter revealed the significance of contrasts, contradictions and movement between the material and psychological experiences of the room and nursing care in this care context.nnnCONCLUSIONSnThe registered nurses say that something momentous occurred during the care process and they showed a strong determination and commitment to being part of the ending of the patients life circle, despite the situation often being one of stress.nnnRELEVANCE TO CLINICAL PRACTICEnThe findings highlight the need for various forms of support for the nurses to meet their need for new and updated knowledge and support in existential matters. This may promote a better quality of care and confirm the nurses in their caring practice. Moreover, there is a need to introduce the hospice philosophy into acute-care settings in hospitals.

A phenomenological study of experiences of being cared for in a critical care setting: the meanings of the patient room as a place of care.

UNLABELLEDnPrevious research highlights the impact of care and treatment in ICUs on the patient recovery process and wellbeing. However, little is known about how the interior design in the ICU settings may affect patients wellbeing.nnnOBJECTIVEnThe aim of this study is, by using a lifeworld perspective, to reveal the meanings of the ICU settings as a place of care.nnnDESIGNnNine patients from three ICUs in Sweden participated. Data were collected using photo-voice methodology and were analysed using a reflective lifeworld phenomenological approach.nnnRESULTSnThe ICU setting as a place of care for critically ill patients is a complex and multidimensional phenomenon. The place is constituted of patients, staff and technical equipment. The struggle for life and occurrences taking place there determine how the room is perceived. The tone and touch of caring together with interior design are fundamental for the room as lived. The room is experienced in various moods; a place of vulnerability, a place inbetween, a place of trust and security, a life-affirming place, a place of tenderness and care and an embodied place.nnnCONCLUSIONnPromoting patients well-being and satisfaction of care involves integrating a good design and a caring attitude and paying attention to patients needs.

Lighting, sleep and circadian rhythm : An intervention study in the intensive care unit.

Patients in an intensive care unit (ICU) may risk disruption of their circadian rhythm. In an intervention research project a cycled lighting system was set up in an ICU room to support patients circadian rhythm. Part I aimed to compare experiences of the lighting environment in two rooms with different lighting environments by lighting experiences questionnaire. The results indicated differences in advantage for the patients in the intervention room (n=48), in perception of daytime brightness (p=0.004). In nighttime, greater lighting variation (p=0.005) was found in the ordinary room (n=52). Part II aimed to describe experiences of lighting in the room equipped with the cycled lighting environment. Patients (n=19) were interviewed and the results were presented in categories: A dynamic lighting environment, Impact of lighting on patients sleep, The impact of lighting/lights on circadian rhythm and The lighting calms. Most had experiences from sleep disorders and half had nightmares/sights and circadian rhythm disruption. Nearly all were pleased with the cycled lighting environment, which together with daylight supported their circadian rhythm. In nights actual lighting levels helped patients and staff to connect which engendered feelings of calm.

Being the parent of a ventilator-assisted child: perceptions of the family-health care provider relationship when care is offered in the family home.

The number of medically fragile children cared for at home is increasing; however, there are few studies about the professional support these families receive in their homes. The aim of the study was to understand the meanings that parents had about the support they received from health care professionals who offered care for their ventilator-assisted child in the family home. A phenomenological-hermeneutic method was used. Data included the narratives of five mother–father couples living in Sweden who were receiving professional support for their ventilator-assisted child. The findings indicate that receiving professional support meant being at risk of and/or exposed to the exercise of control over family privacy. The professional support system in the families’ homes worked more by chance than by competent and sensible planning. In good cases, caring encounters were characterized by a mutual relationship where various occupational groups were embraced as a part of family life. The findings are discussed in light of compassionate care, exercise of power, and the importance of holistic educational programs.

Living in Liminality—Being Simultaneously Visible and Invisible: Caregivers' Narratives of Palliative Care

Palliative care is an integral part of care and takes place in many settings—including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered—including the individuals history, family and loved ones, and individual strengths and weaknesses.

Nursing staff's experiences of working in an evidence-based designed ICU patient room-An interview study.

INTRODUCTIONnIt has been known for centuries that environment in healthcare has an impact, but despite this, environment has been overshadowed by technological and medical progress, especially in intensive care. Evidence-based design is a concept concerning integrating knowledge from various research disciplines and its application to healing environments.nnnOBJECTIVEnThe aim was to explore the experiences of nursing staff of working in an evidence-based designed ICU patient room.nnnMETHODnInterviews were carried out with eight critical care nurses and five assistant nurses and then subjected to qualitative content analysis.nnnFINDINGSnThe experience of working in an evidence-based designed intensive care unit patient room was that the room stimulates alertness and promotes wellbeing in the nursing staff, fostering their caring activities but also that the interior design of the medical and technical equipment challenges nursing actions.nnnCONCLUSIONSnThe room explored in this study had been rebuilt in order to create and evaluate a healing environment. This study showed that the new environment had a great impact on the caring staffs wellbeing and their caring behaviour. At a time when turnover in nurses is high and sick leave is increasing, these findings show the importance of interior design ofintensive care units.

When technology enters the home – a systematic and integrative review examining the influence of technology on the meaning of home

AIMnTo analyse and synthesise the research that has investigated the experience of home in relation to home mechanical ventilation (HMV).nnnMETHODnSystematic integrative review. Four electronic databases (CINAHL, PubMed, Scopus and ISI Web of Knowledge) were searched between January 2010 and April 2017 as well as reference lists of included studies. Quantitative and qualitative studies meeting the inclusion criteria were critically appraised. Study findings were inductively analysed and synthesised using the integrative approach.nnnRESULTSnTwenty-one studies were included in the review. Two main themes emerged: home and at-homeness and altered interpersonal relationships. The literature suggests that the technology alters the meaning of home through its structural and conceptual reconfiguration. Paradoxically, the space is experienced as both a home and a workplace which creates tensions and ambiguities for HMV users/families and care workers. HMV users and their families attempt to recreate a sense of home and identity while gaining control over space and decision-making. Nevertheless, the home is seen as the preferred place to live and close bonds can develop between the different actors.nnnCONCLUSIONSnThe literature suggests that the transformation of the meaning of home by the presence of technology and workers poses challenges that are often under-recognised. Healthcare professionals and personal care assistants need preparation for the complexities of working in the home setting in addition to clinical aspects of caregiving. Home adaptations need to be carefully planned and include design principles that retain at-homeness while enabling the creation of a safe workplace.

‘I’m almost never sick’: Everyday life experiences of children and young people with home mechanical ventilation

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Caring and being cared for at home : a meta-synthesis describing the relationships between patients, informal caregivers and health professionals

AIMnThe present study describes, through a meta-synthesis, the relationship between patients, informal caregivers and health professionals involved in home care.nnnBACKGROUNDnToday, many people receive help from health care professionals in their homes with the consequence that, for many health care professionals, their working place is the patients homes. Research that addresses the dynamics in the caring relationship in home care seems to be rare.nnnDESIGNnA meta-synthesis is an integrated interpretation of qualitative research findings, which is more substantive than the results from each individual investigation.nnnMETHODnWe performed a systematic literature search regarding studies published during the period 1992-2005, using the search terms home nursing, professional and home health care. The included studies described relations in a home care context, between health professionals and patients or relations between health professionals, patients and their informal caregivers published in the same study.nnnRESULTSnThe findings showed that when professionals entered peoples home, the private area changed. The study presents an interpretation of the changed meanings of home as the place and space for professional care. We described the meanings of the relationship in two main themes with subthemes. The main themes are being there and home care as a co-creation. The understanding of relationships in home care is seen as the development of a professional friendship. This concept is reflected on through the writings of Aristotle and Alberoni.nnnCONCLUSIONnTo address these concerns, it is important that home care providers, recipients and their family members develop friendships. These friendships should be a part of any professional relationship.nnnRELEVANCE TO CLINICAL PRACTICEnWhen health professionals enter patients homes, they have to be aware of the risk of transgressing borders of privacy. In addition, devaluing patients or their informal caregivers knowledge and their opinions about the care is interpreted as an exercise of institutional power.