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1.  Family physicians' experiences when collaborating with district nurses in home care-based medical treatment. A grounded theory study 
BMC Family Practice  2010;11:82.
Background
This article concerns Swedish family physicians' (FPs) experiences collaborating with district nurses (DNs) when the DNs provide medical treatment for home care patients. The aim was to develop a model to illuminate this process from the FPs' perspective.
Methods
Semi-structured interviews were conducted with 13 FPs concerning one of their patients with home care by a DN. The interview focused on one patient's treatment and care by different care providers and the collaboration among them. Grounded theory methodology (GTM) was used in the analyses.
Results
It was essential for FPs to collaborate with and rely on DNs in the medical treatment of home care patients. According to the FPs, factors such as the disease, FPs' working conditions and attitude determined how much of the initiative in this treatment FPs retained or left to DNs. Depending on the circumstances, two different roles were adopted by the individual FPs: medical conductors who retain the initiative and medical consultants who leave the initiative to DNs. Factors as the disease, DNs' attitudes towards collaboration and DNs' working conditions influenced whether or not the FPs felt that grounds for relying on DNs were satisfactory. Regardless of the role of the FP, conditions for medical treatment were judged by the FPs to be good enough when the grounds for relying on the DN were satisfactory and problematic when they were not.
Conclusions
In the role of conductor, the FP will identify when the grounds for relying on the DN are unsatisfactory and be able to take action, but in the role of consultant the FP will not detect this, leaving home care patients without appropriate support. Only when there are satisfactory grounds for relying on the DN, will conditions for providing home care medical treatment be good enough when the FP adopts a consultative role.
doi:10.1186/1471-2296-11-82
PMCID: PMC2984454  PMID: 20979649
2.  Empowerment interventions, knowledge translation and exchange: perspectives of home care professionals, clients and caregivers 
Background
Few studies have examined empowerment interventions as they actually unfold in home care in the context of chronic health problems. This study aims to document the empowerment process as it plays out in interventions with adults receiving home care services.
Methods/design
The qualitative design chosen is a fourth generation evaluation combined with case studies. A home care team of a health and social services center situated in the Eastern Townships (Québec, Canada) will be involved at every step in the study. A sample will be formed of 15 health care professionals and 30 of their home care clients and caregiver. Semi-structured interviews, observations of home care interventions and socio-demographic questionnaires will be used to collect the data. Nine instruments used by the team in prior studies will be adapted and reviewed. A personal log will document the observers' perspectives in order to foster objectivity and the focus on the intervention. The in-depth qualitative analysis of the data will illustrate profiles of enabling interventions and individual empowerment.
Discussion
The ongoing process to transform the health care and social services network creates a growing need to examine intervention practices of health care professionals working with clients receiving home care services. This study will provide the opportunity to examine how the intervention process plays out in real-life situations and how health care professionals, clients and caregivers experience it. The intervention process and individual empowerment examined in this study will enhance the growing body of knowledge about empowerment.
doi:10.1186/1472-6963-8-177
PMCID: PMC2528009  PMID: 18713474
3.  Family physicians' effort to stay in charge of the medical treatment when patients have home care by district nurses. A grounded theory study 
BMC Family Practice  2009;10:45.
Background
District nurses (DNs) provide home care for old persons with a mixture of chronic diseases, symptoms and reduced functional ability. Family physicians (FPs) have been criticised for their lack of involvement in this care. The aim of this study was to obtain increased knowledge concerning the FP's experience of providing medical treatment for patients with home care provided by DNs by developing a theoretical model that elucidates how FPs handle the problems they encounter regarding the individual patients and their conditions.
Methods
Semi-structured interviews were conducted with 13 Swedish FPs concerning one of their registered patients with home care by a DN, and the treatment of this patient. Grounded theory methodology (GTM) was used in the analyses.
Results
The core category was the effort to stay in charge of the medical treatment. This involved three types of problems: gaining sufficient insight, making adequate decisions, and maintaining appropriate medical treatment. For three categories of patients, the FPs had problems staying in charge. Patients with reduced functional ability had problems providing information and maintaining treatment. Patients who were "fixed in their ways" did not provide information and did not comply with recommendations, and for patients with complex conditions, making adequate decisions could be problematic. To overcome the problems, four different strategies were used: relying on information from others, supporting close observation and follow-up by others, being constantly ready to change the goal of the treatment, and relying on others to provide treatment.
Conclusion
The patients in this study differed from most other patients seen at the healthcare centre as the consultation with the patient could not provide the usual foundation for decisions concerning medical treatment. Information from and collaboration with the DN and other home care providers was essential for the FP's effort to stay in charge of the medical treatment. The complexity of the situation made it problematic for the FP to make adequate decisions about the goal of the medical treatment. The goal of the treatment had to be constantly evaluated based on information from the DN and other care providers, and thus this information was absolutely crucial.
doi:10.1186/1471-2296-10-45
PMCID: PMC2709922  PMID: 19545441
4.  Safety in home care: A research protocol for studying medication management 
Background
Patient safety is an ongoing global priority, with medication safety considered a prevalent, high-risk area of concern. Yet, we have little understanding of the supports and barriers to safe medication management in the Canadian home care environment. There is a clear need to engage the providers and recipients of care in studying and improving medication safety with collaborative approaches to exploring the nature and safety of medication management in home care.
Methods
A socio-ecological perspective on health and health systems drives our iterative qualitative study on medication safety with elderly home care clients, family members and other informal caregivers, and home care providers. As we purposively sample across four Canadian provinces: Alberta (AB), Ontario (ON), Quebec (QC) and Nova Scotia (NS), we will collect textual and visual data through home-based interviews, participant-led photo walkabouts of the home, and photo elicitation sessions at clients' kitchen tables. Using successive rounds of interpretive description and human factors engineering analyses, we will generate robust descriptions of managing medication at home within each provincial sample and across the four-province group. We will validate our initial interpretations through photo elicitation focus groups with home care providers in each province to develop a refined description of the phenomenon that can inform future decision-making, quality improvement efforts, and research.
Discussion
The application of interpretive and human factors lenses to the visual and textual data is expected to yield findings that advance our understanding of the issues, challenges, and risk-mitigating strategies related to medication safety in home care. The images are powerful knowledge translation tools for sharing what we learn with participants, decision makers, other healthcare audiences, and the public. In addition, participants engage in knowledge exchange throughout the study with the use of participatory data collection methods.
doi:10.1186/1748-5908-5-43
PMCID: PMC2894743  PMID: 20525363
5.  Everyday practices at the medical ward: a 16-month ethnographic field study 
Background
Modern hospital care should ostensibly be multi-professional and person-centred, yet it still seems to be driven primarily by a hegemonic, positivistic, biomedical agenda. This study aimed to describe the everyday practices of professionals and patients in a coronary care unit, and analyse how the routines, structures and physical design of the care environment influenced their actions and relationships.
Methods
Ethnographic fieldwork was conducted over a 16-month period (between 2009 and 2011) by two researchers working in parallel in a Swedish coronary care unit. Observations, informal talks and formal interviews took place with registered nurses, assistant nurses, physicians and patients in the coronary care unit. The formal interviews were conducted with six registered nurses (five female, one male) including the chief nurse manager, three assistant nurses (all female), two cardiologists and three patients (one female, two male).
Results
We identified the structures that either promoted or counteracted the various actions and relationships of patients and healthcare professionals. The care environment, with its minimalistic design, strong focus on routines and modest capacity for dialogue, restricted the choices available to both patients and healthcare professionals. This resulted in feelings of guilt, predominantly on the part of the registered nurses.
Conclusions
The care environment restricted the choices available to both patients and healthcare professionals. This may result in increased moral stress among those in multi-professional teams who work in the grey area between biomedical and person-centred care.
doi:10.1186/1472-6963-12-184
PMCID: PMC3409076  PMID: 22748059
Person-centered care; Moral stress; Interprofessional relationship; Professional-patient relations; Care environment; Care continuity.
6.  Patient participation: A qualitative study of immigrant women and their experiences 
Patient participation in healthcare is a neglected area of interest in the rather extensive amount of research on immigrant so-called Selma patients in Swedish health care as well as worldwide. The aim is to explore the phenomenon “patient participation” in the context of the Swedish health care from the perspective of immigrants non-fluent in Swedish. A phenomenological lifeworld approach was chosen. Data were collected from patients within a municipal home care setting in Sweden. Eight women agreed to participate. In seven interviews, an interpreter was necessary for the translation of the interview. Five authorized interpreters were used. Data were analysed in accordance to a descriptive phenomenological method for caring research. The analysis led to an essence of the phenomenon with three constituents, “to experience participation,” “to refrain from participation,” and “to be deprived of participation.” Patient participation from the perspective of immigrant women means that patients are involved and active in their own health and caring processes. For these women, it is particularly important to have the opportunity to express themselves. Patient participation presupposes professional caregivers who act in a way that increases the patients' opportunities to take part. A skilled interpreter is often necessary in order to enable the patient participation.
doi:10.3402/qhw.v5i1.4650
PMCID: PMC2879867  PMID: 20640027
Immigrants; patient participation; phenomenology; translating; women
7.  Heart failure at home—an observational study of participation among patients in structured home care 
Introduction
A growing number of patients with heart failure (HF) will need lifelong care and one option is to provide advanced HF care in the patient’s home. To our knowledge, studies describing the observed participation in home-care settings are lacking.
Aim
To identify and describe patient participation in care-meetings during home-care given through a European home-care model.
Methods
Study inclusion among Swedish patients that receive structured home-care at four different home care settings are ongoing. A strategic sample of patients is performed to reach a variation regarding severity of HF, different needs of home-care, age and gender. To collect data, video-recorded non participant observations are conducted. A total of 15 observations have been performed. The remaining observational data will be collected during 2011. Data will be analyzed with qualitative content analysis and categories developed inductively. The analysis has been initiated. Meaning units related to patient participation have been identified and recorded. The next step will be to develop codes out of the units, and to develop a coding scheme. Finally categories that describe patient participation will be developed.
Significance of the study: Participation in care is regulated in health-care legalizations and is important from the individual’s perspective. The results from this study can be used for deepening the understanding of participation in home-care.
PMCID: PMC3184807
heart failure; participation; home-care; observations
8.  Attributions of Agency and the Construction of Moral Order: Dementia, Death, and Dignity in Nursing-home Care 
Social psychology quarterly  2009;72(2):165-179.
Using evidence gathered during 18 months of participant-observation in 2 nursing homes and 65 interviews with staff, this article examines how nursing-home staff use agency as a rhetorical resource to construct a dignified workplace. Staff attribute agency to dying residents, saying they choose the timing and conditions of their death. Staff equally insist that aggressive residents do not have agency. These two sets of attributions are used as counterpoints. Both go well beyond the available facts of the situation and reflect unspoken assumptions and interests of nursing-care workers. Through these attributions, the staff achieves a situated moral order in which compassionate care is provided to deserving residents in caring nursing homes. Staff attributions of agency are collectively shaped by professional philosophies, training and education, and regulatory guidelines. Finally, this article shows how it is analytically and theoretically productive to recast agency as a cultural object, whose use is subject to empirical investigation, rather than as a theoretical construct.
doi:10.1177/019027250907200206
PMCID: PMC3113709  PMID: 21686043
9.  Patients with acute exacerbation of chronic obstructive pulmonary disease feel safe when treated at home: a qualitative study 
Background
The design of new interventions to improve health care for patients with chronic obstructive pulmonary disease (COPD) requires knowledge about what patients with an acute exacerbation experience as important and useful. The objective of the study was to explore patients’ experiences of an early discharge hospital at home (HaH) treatment programme for exacerbations in COPD.
Methods
Six exacerbated COPD patients that were randomised to receiving HaH care and three patients randomised to receiving traditional hospital care were interviewed in semi-structured in-depth interviews. Four spouses were present during the respective patients’ interviews. The interviews were audio-taped, transcribed and analysed by a four-step method for systematic text condensing.
Results
Despite limited assistance from the health care service, the patients and their spouses experienced the HaH treatment as safe. They expressed that information that was adapted to specific situations in their daily lives and given in a familiar environment had positive impact on their self-management of COPD.
Conclusion
The results contribute to increased knowledge and awareness about what the patients experienced as important aspects of a HaH treatment programme. How adapted input from health services can make patients with exacerbation of COPD feel safe and better able to manage their disease, is important knowledge for developing new and effective health services for patients with chronic disease.
doi:10.1186/1471-2466-12-45
PMCID: PMC3517315  PMID: 22920051
Hospital at home treatment; Acute exacerbation of COPD; Qualitative interviews; Patient perspective
10.  Heart failure at home—patients’ experiences of participation in structured home care 
Introduction
Acute hospital settings do not provide the ideal care environment for older patients with heart failure (HF). An option is to provide advanced HF care in the patient’s home. A European integrated home-care model has been developed with the goals that patients will experience participation, safety and have knowledge about their disease and treatment. Participation in care has shown to have positive effects on self-care activities.
Aim
To describe the meaning of participation in care of HF patients who receive home-care.
Methods
Patients receiving home-care at four different settings were included in the study. Strategic sampling was used to reach a variation regarding severity of HF, different needs of home-care, age and gender. A total of 18 open ended interviews have been conducted. The interviews were analyzed with qualitative content analysis, where categories were developed inductively. A preliminary analysis based on nine out of 18 interviews has been initiated. Five preliminary categories that describe patient participation have been identified: caring communication, accessibility, individual activity, trust and prerequisites for making decisions. Each category consists of different subcategories.
Significance of the study: Participation in care is regulated in health-care legalizations and is important from the individual’s perspective. Home-care is becoming more common in patients with HF. Therefore it is important to describe HF patient’s experiences of participation within home-care.
PMCID: PMC3184808
heart failure; participation; home-care; qualitative methods
11.  Implementing a quality improvement programme in palliative care in care homes: a qualitative study 
BMC Geriatrics  2011;11:31.
Background
An increasing number of older people reach the end of life in care homes. The aim of this study is to explore the perceived benefits of, and barriers to, implementation of the Gold Standards Framework for Care Homes (GSFCH), a quality improvement programme in palliative care.
Methods
Nine care homes involved in the GSFCH took part. We conducted semi-structured interviews with nine care home managers, eight nurses, nine care assistants, eleven residents and seven of their family members. We used the Framework approach to qualitative analysis. The analysis was deductive based on the key tasks of the GSFCH, the 7Cs: communication, coordination, control of symptoms, continuity, continued learning, carer support, and care of the dying. This enabled us to consider benefits of, and barriers to, individual components of the programme, as well as of the programme as a whole.
Results
Perceived benefits of the GSFCH included: improved symptom control and team communication; finding helpful external support and expertise; increasing staff confidence; fostering residents' choice; and boosting the reputation of the home. Perceived barriers included: increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. Many of the tools and tasks in the GSFCH focus on improving communication. Participants described effective communication within the homes, and with external providers such as general practitioners and specialists in palliative care. However, many had experienced problems with general practitioners. Although staff described the benefits of supportive care registers, coding predicted stage of illness and advance care planning, which included improved communication, some felt the need for more experience of using these, and there were concerns about discussing death.
Conclusions
Most of the barriers described by participants are relevant to other interventions to improve end of life care in care homes. There is a need to investigate the impact of quality improvement programmes in care homes, such as the GSFCH, on a wider range of outcomes for residents and their families, and to monitor the sustainability of any resulting improvements. It is also important to explore the impact of the different components of these complex interventions.
doi:10.1186/1471-2318-11-31
PMCID: PMC3127758  PMID: 21658253
12.  The transition experience of rural older persons with advanced cancer and their families: a grounded theory study 
Background
Transitions often occur suddenly and can be traumatic to both patients with advanced disease and their families. The purpose of this study was to explore the transition experience of older rural persons with advanced cancer and their families from the perspective of palliative home care patients, bereaved family caregivers, and health care professionals. The specific aims were to: (1) describe the experience of significant transitions experienced by older rural persons who were receiving palliative home care and their families and (2) develop a substantive theory of transitions in this population.
Methods
Using a grounded theory approach, 27 open-ended individual audio-taped interviews were conducted with six older rural persons with advanced cancer and 10 bereaved family caregivers. Four focus group interviews were conducted with 12 palliative care health care professionals. All interviews were transcribed verbatim, coded, and analyzed using Charmaz's constructivist grounded theory approach.
Results
Within a rural context of isolation, lack of information and limited accessibility to services, and values of individuality and community connectedness, older rural palliative patients and their families experienced multiple complex transitions in environment, roles/relationships, activities of daily living, and physical and mental health. Transitions disrupted the lives of palliative patients and their caregivers, resulting in distress and uncertainty. Rural palliative patients and their families adapted to transitions through the processes of "Navigating Unknown Waters". This tentative theory includes processes of coming to terms with their situation, connecting, and redefining normal. Timely communication, provision of information and support networks facilitated the processes.
Conclusion
The emerging theory provides a foundation for future research. Significant transitions identified in this study may serve as a focus for improving delivery of palliative and end of life care in rural areas. Improved understanding of the transitions experienced by advanced cancer palliative care patients and their families, as well as the psychological processes involved in adapting to the transitions, will help health care providers address the unique needs of this vulnerable population.
doi:10.1186/1472-684X-9-5
PMCID: PMC2876144  PMID: 20420698
13.  Perceptions of health care providers concerning patient and health care provider strategies to limit out-of-pocket costs for cancer care 
Current Oncology  2009;16(4):3-8.
Objective
We aimed to describe the perceptions of health care providers concerning patient and health care provider strategies to limit out-of-pocket costs for cancer care.
Methods
We conducted semi-structured interviews with 21 cancer care providers (nurses, social workers, oncologists, surgeons, pharmacists, and dieticians) in Newfoundland and Labrador.
Results
Patients try to minimize costs by substituting or rationing medications, choosing radical treatments, lengthening the time between follow-up appointments, choosing inpatient care, and working during treatment to minimize loss of income. Providers respond to the financial concerns of patients by helping them to access financial assistance programs, by changing chemotherapy and supportive drug prescriptions, and by shortening radiation treatment protocols. They admit patients to hospital and arrange follow-up with physicians closer to a patient’s home.
Conclusions
Out-of-pocket costs resulting from cancer care are incurred at all phases of treatment and follow-up. These costs are substantial concerns for some patients and their health care providers. Encouraging communication between patients and their providers is needed to identify individuals at risk and to safely modify care plans. Tele-oncology and public drug, medical travel, and leave programs are needed to ensure that patients are better able to afford the costs related to cancer care.
PMCID: PMC2722056  PMID: 19672419
Costs; financial burden; affordability; cancer care; rural
14.  Dealing with daily emotions—supportive activities for the elderly in a municipal care setting 
There are diverse descriptions of supportive activities in nursing to be found in the literature. What they have in common is their association with good care outcomes, but they may differ depending on the context in which the care is given. In a Swedish municipal elderly care setting, registered nurses (RN) work in a consultative way and they describe a part of their tasks as comprising supportive activities without specifying what kind of supportive activities they mean. The aim of the study was to explore the main concern of the support given by RN to a group of patients in an elderly home care setting. The study was conducted using Grounded Theory. Data were collected using nonparticipant observations regarding the supportive activities of 12 RN at the home of 36 patients between the ages of 80 and 102. Most of the home visit lasted about 40 min but some lasted for 90 min. The central category was about dealing with daily emotions. This was done by encouraging the situation and reducing the patient's limitations, but situations also occurred in which there was a gap of support. Support was about capturing the emotions that the patient expressed for a particular moment, but there were also situations in which RN chose not to give support. To develop a holistic eldercare, more knowledge is needed about the factors causing the RN to choose not to provide support on some occasions.
doi:10.3402/qhw.v7i0.9510
PMCID: PMC3272264  PMID: 22312410
Support; maintaining wellness; municipal care; the elderly
15.  Effectiveness and cost-effectiveness of early assisted discharge for Chronic Obstructive Pulmonary Disease exacerbations: the design of a randomised controlled trial 
BMC Public Health  2010;10:618.
Background
Exacerbations of Chronic Obstructive Pulmonary Disease (COPD) are the main cause for hospitalisation. These hospitalisations result in a high pressure on hospital beds and high health care costs. Because of the increasing prevalence of COPD this will only become worse. Hospital at home is one of the alternatives that has been proved to be a safe alternative for hospitalisation in COPD. Most schemes are early assisted discharge schemes with specialised respiratory nurses providing care at home. Whether this type of service is cost-effective depends on the setting in which it is delivered and the way in which it is organised.
Methods/Design
GO AHEAD (Assessment Of Going Home under Early Assisted Discharge) is a 3-months, randomised controlled, multi-centre clinical trial. Patients admitted to hospital for a COPD exacerbation are either discharged on the fourth day of admission and further treated at home, or receive usual inpatient hospital care. Home treatment is supervised by general nurses. Primary outcome is the effectiveness and cost effectiveness of an early assisted discharge intervention in comparison with usual inpatient hospital care for patients hospitalised with a COPD exacerbation. Secondary outcomes include effects on quality of life, primary informal caregiver burden and patient and primary caregiver satisfaction. Additionally, a discrete choice experiment is performed to provide insight in patient and informal caregiver preferences for different treatment characteristics. Measurements are performed on the first day of admission and 3 days, 7 days, 1 month and 3 months thereafter. Ethical approval has been obtained and the study has been registered.
Discussion
This article describes the study protocol of the GO AHEAD study. Early assisted discharge could be an effective and cost-effective method to reduce length of hospital stay in the Netherlands which is beneficial for patients and society. If effectiveness and cost-effectiveness can be proven, implementation in the Dutch health care system should be considered.
Trial registration
Netherlands Trial Register NTR1129.
doi:10.1186/1471-2458-10-618
PMCID: PMC2965725  PMID: 20955582
16.  Social meanings and understandings in patient-nurse interaction in the community practice setting: a grounded theory study 
BMC Nursing  2012;11:14.
Background
The patient-nurse relationship is a traditional concern of healthcare research. However, patient-nurse interaction is under examined from a social perspective. Current research focuses mostly on specific contexts of care delivery and experience related to medical condition or illness, or to nurses’ speciality. Consequentially, this paper is about the social meanings and understandings at play within situated patient-nurse interaction in the community practice setting in a transforming healthcare service.
Methods
Grounded theory methodology was used and the research process was characterised by principles of theoretical sensitivity and constant comparative analysis. The field of study was four health centres in the community. The participants were patients and nurses representative of those attending or working in the health centres and meeting there by scheduled appointment. Data collection methods were observations, informal interviews and semi-structured interviews.
Results
Key properties of ‘Being a good patient, being a good nurse’, ‘Institutional experiences’ and ‘Expectations about healthcare’ were associated with the construction of a category entitled ‘Experience’. Those key properties captured that in an evolving healthcare environment individuals continually re-constructed their reality of being a patient or nurse as they endeavoured to perform appropriately; articulation of past and present healthcare experiences was important in that process. Modus operandi in role as patient was influenced by past experiences in healthcare and by those in non-healthcare institutions in terms of engagement and involvement (or not) in interaction. Patients’ expectations about interaction in healthcare included some uncertainly as they strived to make sense of the changing roles and expertise of nurses and, differentiating between the roles and expertise of nurses and doctors.
Conclusions
The importance of social meanings and understandings in patient-nurse interaction is not fully apparent to nurses, but important in the patient experience. Seeking understanding from a social perspective makes a contribution to enhancing knowledge about patient-nurse interaction with subsequent impact on practice, in particular the development of the patient-nurse relationship. The implications are that the meanings and understandings patients and nurses generate from experiences beyond and within their situated interaction are pivotal to the development of their relationship in the transforming community healthcare environment.
doi:10.1186/1472-6955-11-14
PMCID: PMC3496696  PMID: 22950713
17.  Clustering and inertia: structural integration of home care in Swedish elderly care  
Purpose
To study the design and distribution of different organizational solutions regarding the responsibility for and provision of home care for elderly in Swedish municipalities.
Method
Directors of the social welfare services in all Swedish municipalities received a questionnaire about old-age care organization, especially home care services and related activities. Rate of response was 73% (211/289).
Results
Three different organizational models of home care were identified. The models represented different degrees of integration of home care, i.e. health and social aspects of home care were to varying degrees integrated in the same organization. The county councils (i.e. large sub-national political-administrative units) tended to contain clusters of municipalities (smaller sub-national units) with the same organizational characteristics. Thus, municipalities' home care organization followed a county council pattern. In spite of a general tendency for Swedish municipalities to reorganize their activities, only 1% of them had changed their home care services organization in relation to the county council since the reform.
Conclusion
The decentralist intention of the reform—to give actors at the sub-national levels freedom to integrate home care according to varying local circumstances—has resulted in a sub-national inter-organizational network structure at the county council, rather than municipal, level, which is highly inert and difficult to change.
PMCID: PMC2000976  PMID: 17925837
care for the elderly; deinstitutionalisation; decentralisation; integrated care; policy
18.  Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study 
BMC Palliative Care  2008;7:15.
Background
Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.
Methods
The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.
Results
Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).
Conclusion
The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.
doi:10.1186/1472-684X-7-15
PMCID: PMC2553051  PMID: 18796132
19.  First-time parents' experiences of home-based postnatal care in Sweden 
Upsala Journal of Medical Sciences  2010;115(2):131-137.
Aim
To gain a deeper understanding of first-time parents' experiences of early discharge from hospital after delivery and home-based postnatal care.
Material and methods
The study was comprised of focus group interviews, interviews with couples and with fathers. Twenty-one parents participated. Inclusion criteria: healthy women who have given birth to their first child after a normal pregnancy and delivery, the women's partners, healthy and full term babies, Swedish-speaking, discharge from the delivery ward within 24 hours, resident in the Uppsala community, the parents cohabited at the time of the delivery. The material was analysed by qualitative content analysis.
Results
Three themes emerged: The family's strategy, which describes the family's expectations of postnatal care and their experiences of the real situation. Some are flexible concerning going home early, and others have decided in advance. Self-reliance and strength, which explores the parents' feelings of security and uncertainty, freedom and independence, and shared responsibility. Breast-feeding is described as the ‘main thing’, an interactive learning process. Professional support in the home summarizes the parents' experience of the midwife's support at home. While conflicting feelings may be revealed during the first days, the midwife confirms their new roles as parents. The midwife is seen as a support and adviser to the parents.
Conclusion
This study shows that parents welcome home-based postnatal care with professional support from midwives. We conclude that this care suits healthy families. We think it will be more important in the future to discriminate between healthy families and those in need of hospital care, than to focus on the moment when they leave the hospital, early or late.
doi:10.3109/03009730903431809
PMCID: PMC2853791  PMID: 20074000
Breast-feeding; early discharge; home-based postnatal care
20.  Why some women fail to give birth at health facilities: a qualitative study of women’s perceptions of perinatal care from rural Southern Malawi 
Reproductive Health  2013;10:9.
Background
Despite Malawi government’s policy to support women to deliver in health facilities with the assistance of skilled attendants, some women do not access this care.
Objective
The study explores the reasons why women delivered at home without skilled attendance despite receiving antenatal care at a health centre and their perceptions of perinatal care.
Methods
A descriptive study design with qualitative data collection and analysis methods. Data were collected through face-to-face in-depth interviews using a semi- structured interview guide that collected information on women’s perception on perinatal care. A total of 12 in- depth interviews were conducted with women that had delivered at home in the period December 2010 to March 2011. The women were asked how they perceived the care they received from health workers before, during, and after delivery. Data were manually analyzed using thematic analysis.
Results
Onset of labor at night, rainy season, rapid labor, socio-cultural factors and health workers’ attitudes were related to the women delivering at home. The participants were assisted in the delivery by traditional birth attendants, relatives or neighbors. Two women delivered alone. Most women went to the health facility the same day after delivery.
Conclusions
This study reveals beliefs about labor and delivery that need to be addressed through provision of appropriate perinatal information to raise community awareness. Even though, it is not easy to change cultural beliefs to convince women to use health facilities for deliveries. There is a need for further exploration of barriers that prevent women from accessing health care for better understanding and subsequently identification of optimal solutions with involvement of the communities themselves.
doi:10.1186/1742-4755-10-9
PMCID: PMC3585850  PMID: 23394229
Community; Health surveillance assistants in maternal and newborn care; Lay birth attendant; Perinatal period; Quality of care; Skilled birth attendant
21.  Injuries among children in home and out-of-home care. 
Injury Prevention  1997;3(4):267-271.
As the number of children receiving care in out-of-home settings increases in the United States, the risk of injury in such settings has become the subject of intense research. OBJECTIVES: This study examined the relative safety of out-of-home care compared with care in a child's own home. METHODS: This community based prospective cohort study of 656 families in three adjacent counties in the Piedmont region of North Carolina characterizes the patterns and rates of injuries among children less than 5 years of age in three child care settings, home care (HC), center based care (CBC), and other out-of-home care (OOHC). Information about minor and severe injuries was obtained from parents using monthly telephone interviews over a one year period. Statistical modeling designed to handle unbalanced data with correlated observations was used as the primary tool for analysis. RESULTS: Rate of minor injuries was highest in CBC, followed by HC, and then OOHC. However, these differences for OOHC may have been due to reporting biases and errors in rate estimates. There were no significant differences in severe injury rates among the three settings. CONCLUSIONS: The risk of serious injury among children under 5 in CBC is not different from that of children in HC or OOHC despite the fact that the risk of minor injury is higher.
PMCID: PMC1067852  PMID: 9493622
22.  Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study 
BMC Pediatrics  2013;13:10.
Background
The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).
Methods
This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data.
Results
A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC.
Conclusions
Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.
doi:10.1186/1471-2431-13-10
PMCID: PMC3570291  PMID: 23331710
Complex care; Care plan; Children with medical complexity; Children with special healthcare needs
23.  A patient survey of out-of-hours care provided by Emergency Care Practitioners 
Background
Emergency Care Practitioners (ECPs) have recently been deployed to provide out-of-hours primary care home visits – a practice development that has been supported by policy makers. The aim of the study was to evaluate the care provided to patients receiving out-of-hours home visits from ECPs in London from the patients' perspective and to assess their wellbeing following the visit.
Methods
A bespoke telephone-administered questionnaire was designed to survey all patients who had received out-of-hours care in Bromley Primary Care Trust from ECPs during a ten week period in 2005 (n = 174).
Results
Sixty three patients (36.2%) were excluded because: no telephone number was available; they had a diagnosis of dementia; or had not received a study information sheet. The remainder (n = 111) were contacted 3–5 days after the home visit, and 81 of these (73.0%) completed the survey. Of those respondents treated at home who gave unequivocal answers (n = 60), all but one (8.3%) reported that they felt that their treatment had been 'right' and/or had followed any advice given. However, overall only 86.4% reported that they had been clear about their ECP's assessment, and only 58.0% reported that their health was now 'better'. Those who reported that they were not clear about their assessment were less likely to report that their health was 'better' (p = 0.03) and more likely to have subsequently used hospital-based health services (p = 0.03).
Conclusion
Most patients treated at home by ECPs appeared satisfied and compliant with the care provided, according to the measures used in this study. However, it appears that a sizeable minority of patients were unclear about ECP assessments and it remains to be seen whether these patients had pre-existing health complaints which made them less likely to recover and more likely to seek hospital care, or whether the lack of clarity about their assessment undermined their subsequent recovery and necessitated hospital care. Further research is required to establish if the assessments provided by ECPs are less clear than those provided by other practitioners, and whether it is possible to ensure that all such assessments are clear to all patients.
Patients hold a mainly positive view of out-of-hours home visit care provided by ECPs, although a lack of clarity about their assessment was evident, with a possible impact on their continuing health.
doi:10.1186/1471-227X-7-4
PMCID: PMC1913059  PMID: 17573959
24.  The information and support needs of patients discharged after a short hospital stay for treatment of low-risk Community Acquired Pneumonia: implications for treatment without admission 
Background
There is increasing evidence that patients with low-risk community acquired pneumonia (CAP) can be effectively treated as outpatients. This study aimed to explore patients' experiences of having pneumonia and seeking health care; their perceptions of the information provided by health professionals; how they self managed at home; their information and support needs; and their beliefs and preferences regarding site of care.
Methods
We conducted qualitative, semi-structured interviews with 15 patients who had a confirmed diagnosis of low-risk CAP and had received fewer than 3 days hospital care. Interviews were audio recorded and transcribed, and data were analysed thematically.
Results
Most patients left hospital with no clear understanding of pneumonia, its treatment or follow-up and most identified additional-other specific information needs when they got home. Some were unable to independently address their activities of daily living in their first days at home.
Main concerns after discharge related to the cause and implications of pneumonia, symptom trajectory and prevention of transmission. Most sought advice from their GP in their first days at home, and indicated they would have appreciated a follow-up phone call or visit to discuss their concerns.
Patients' preferences for site of care varied and appeared to be influenced by beliefs about safety (fear of rapid deterioration at home or acquiring an infection in hospital), family burden, access to support, or confidence in home-care services. Those who received intravenous (IV) medication were more likely to state a preference for hospital care.
Conclusion
Trends to support community-based treatment of CAP should be accompanied by increased attention to the information and support needs of patients who go home to self-manage. Although some information needs can be anticipated and addressed on diagnosis, specific needs often do not become apparent until patients return home, so some access to information and support in the community is likely to be necessary. Our finding that patients who received IV treatment for low-risk CAP were concerned about the relative safety of home-based care highlights the potential importance of the inferences patients make from treatment modalities, and also the need to ensure that patients' expectations and understandings are managed effectively.
doi:10.1186/1471-2466-8-11
PMCID: PMC2518538  PMID: 18664283
25.  Care of the old—A matter of ethics, organization and relationships 
The world stands on the threshold of a demographic revolution called global ageing. According to the World Health Organization (WHO), the population aged 60 and over is expected to increase from today's 650 million to an estimated 2 billion by 2050. Alongside demographic changes, dramatic changes can also be observed in older people's services. The shift has resulted in reduced government spending on caring for ill and frail older people in health care. Today, many governments have developed strategies to keep older people living well in their private home for as long as possible and have replaced long-term care institutions with residential homes. The aim of this study was to illuminate the meaning of caring for older people as experienced by health care students and professionals working in this field. Interviews were carried out with 17 women and one man, aged 21–65 years; six were Registered Nurses (RN), six were Enrolled Nurses (EN) and six were nursing students. The interviews were analyzed with a phenomenological hermeneutical approach and provided three themes and eight sub-themes: Ethical moral self with sub-themes “meeting the needs of the old”, “pliability towards the old”, and “difficulties in meeting aggressiveness”; Organizational and co-workers ethical moral actions with sub-themes, “co-workers who are offensive”, and “supportive and non-supportive leaders”: The relation with the old persons and their relatives with sub-themes “fellowship and closeness in the relation”, “uncertainty and fear in the relation”, and, “demands from the older persons’ close relatives”.
doi:10.3402/qhw.v7i0.9684
PMCID: PMC3349146  PMID: 22577469
Care of the old; phenomenological hermeneutics; ethics; organization; care relation; nurses; students

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