Home care for patients in need of advanced care and technology : a challenge for patients and their caregivers

Background and aim: There is an ongoing trend of advanced care ‘moving out’ from hospitals and into patients' homes. In Sweden, caregivers with limited training, employed by municipalities or private agencies take 24-hour responsibility for patient care with limited support from healthcare professionals. The aim of this thesis was to explore and gain new and broadened understanding of 24-hour home care for patients in need of advanced care and technology. Material and methods: A multi method approach was used. Studies I and II resulted from a field study using grounded theory methodology. Interviews and observations were performed in the homes of four adult patients in 24-hour home care (study I) and their 19 caregivers (study I and II). Participants in study III and IV were caregivers (n=128) caring for adult patients in 24-hour care with home mechanical ventilation (HMV). A study-specific questionnaire, including questions in accordance with the Demand-Control model, was used. Caregivers’ socio-demographic and workplace data, perceived competence and responsibility (study III), and their perceived working conditions (study IV) were investigated. Descriptive statistics and logistic regression analyses were performed. A comparison was conducted with a population-based survey including caregivers in general home care (n= 585). Results: In the qualitative studies, patients and caregivers were found using compensatory processes when care and work were not suited to their needs, illustrated in two theoretical models: 1. The patients strived for control and safety by taking control, seeking safe hands and navigating in the care system. In their strivings, they selected caregivers they could trust, instructed unskilled caregivers and coordinated their care themselves. 2. The caregivers compensated by day-by-day learning, balancing relations with the patient, self-managing and navigating the patient care system in their strivings to combine safe care with good working conditions. Actively employing compensatory processes, some caregivers adopted an ‘inclusive approach’, compensating for their own barriers as well as those of their colleagues, and taking overall responsibility for their workplace. Among the caregivers in HMV care (n=128) investigated, 55% (n=70) lacked formal health care training. 27% (n=34) reported shorter courses, and 19% (n=24) had training equivalent with a licensed practical nurse exam (LPN). Regardless, 80% the caregivers rated their competence as high, and 59% rated their responsibility as high. On-the-job training was significantly associated with high ratings on perceived competence, responsibility and control. Being clinically supervised was associated with high ratings on responsibility and psychological demand. Seventy-six of caregivers intended to stay in their jobs for the next two years, and 29% experienced bullying and/or discrimination at their workplace. Female caregivers had more healthcare training and felt more competent and stimulated than males. Compared to the population-based survey group, no differences in perceived working conditions were found except for psychological demand, where the caregivers in HMV care rated lower. Conclusion: Despite a general lack of formal healthcare training and support, patients and caregivers managed 24-hour home care by compensating, on-the-job training, one-patient care, and including caregivers. However, the results suggest that improved training, support and quality control are needed to ensure safe patient care and good working conditions for caregivers. These results can contribute to continued development of the caregiver role in HMV care

A trial to evaluate the effect of the sodium–glucose co‐transporter 2 inhibitor dapagliflozin on morbidity and mortality in patients with heart failure and reduced left ventricular ejection fraction (DAPA‐HF)

Background: Sodium–glucose co‐transporter 2 (SGLT2) inhibitors have been shown to reduce the risk of incident heart failure hospitalization in individuals with type 2 diabetes who have, or are at high risk of, cardiovascular disease. Most patients in these trials did not have heart failure at baseline and the effect of SGLT2 inhibitors on outcomes in individuals with established heart failure (with or without diabetes) is unknown. Design and methods: The Dapagliflozin And Prevention of Adverse‐outcomes in Heart Failure trial (DAPA‐HF) is an international, multicentre, parallel group, randomized, double‐blind, study in patients with chronic heart failure, evaluating the effect of dapagliflozin 10 mg, compared with placebo, given once daily, in addition to standard care, on the primary composite outcome of a worsening heart failure event (hospitalization or equivalent event, i.e. an urgent heart failure visit) or cardiovascular death. Patients with and without diabetes are eligible and must have a left ventricular ejection fraction ≤ 40%, a moderately elevated N‐terminal pro B‐type natriuretic peptide level, and an estimated glomerular filtration rate ≥ 30 mL/min/1.73 m2. The trial is event‐driven, with a target of 844 primary outcomes. Secondary outcomes include the composite of total heart failure hospitalizations (including repeat episodes), and cardiovascular death and patient‐reported outcomes. A total of 4744 patients have been randomized. Conclusions: DAPA‐HF will determine the efficacy and safety of the SGLT2 inhibitor dapagliflozin, added to conventional therapy, in a broad spectrum of patients with heart failure and reduced ejection fraction

Erfarenheter av att växa upp i en familj där en förälder är drabbad av psykisk sjukdom.

Att vara barn till en förälder som drabbats av psykisk sjukdom kan innebära ett svårt lidande. Syftet var att belysa erfarenheter av att växa upp i en familj där en förälder är drabbad av psykisk sjukdom. Litteraturstudien är baserad på åtta vetenskapliga artiklar. Artiklarnas resultat analyserades och resulterade i tre rubriker: att leva i ovisshet, strategier i vardagen och ansvar. I resultatet framkom att psykisk sjukdom hos föräldrar utgjorde stor ovisshet för barnen och att de saknade professionell hjälp. Barnen upplevde bristfällig och otillräcklig information och ansåg att vårdpersonalen inte involverade dem i vården. Sjuksköterskan måste vara lyhörd för hur barnen upplever situationen och erbjuda sitt stöd till dem. Det är också viktigt att se den psykiskt sjuke som en del i ett större sammanhang, där barnen spelar en betydelsefull roll

From risky to safer home care : health care assistants striving to overcome a lack of training, supervision, and support

Patients receiving home care are becoming increasingly dependent upon competent caregivers’ 24-h availability due to their substantial care needs, often with advanced care and home care technology included. In Sweden, care is often carried out by municipality-employed paraprofessionals such as health care assistants (HC assistants) with limited or no health care training, performing advanced care without formal training or support. The aim of this study was to investigate the work experience of the HC assistants and to explore how they manage when delivering 24-h home care to patients with substantial care needs. Grounded theory methodology involving multiple data sources comprising interviews with HC assistants (n19) and field observations in patients’ homes was used to collect data and constant comparative analysis was used for analysis. The initial analysis revealed a number of barriers, competence gap; trapped in the home setting; poor supervision and unconnected to the patient care system, describing the risks associated with the situations of HC assistants working in home care, thus affecting their working conditions as well as the patient care. The core process identified was the HC assistants’ strivings to combine safe home care with good working conditions by using compensatory processes. The four identified compensatory processes were: day-by-day learning; balancing relations with the patient; self-managing; and navigating the patient care system. By actively employing the compensatory processes, the HC assistants could be said to adopt an inclusive approach, by compensating for their own barriers as well as those of their colleagues’ and taking overall responsibility for their workplace. In conclusion, the importance of supporting HC assistants in relation to their needs for training, supervision,and support from health care professionals must be addressed when organising 24-h home care to patients with substantial care needs in the future

Patients in 24-hour home care striving for control and safety

Background: This article concerns Swedish patients receiving 24-hour home care from health care assistants (HCassistants) employed by the municipality. Home care is a complex interactive process involving the patient, family,HC assistants as well as professional care providers. Previous studies exploring patient perspectives on home carehave been based mainly on patient interviews. In contrast, the present study took a broad perspective on patients’experiences and thoughts by combining field observations on care situations with patient and HC assistantinterviews. The aim of the study presented in this article was to promote a new and broadened understanding ofpatients receiving 24-hour home care by constructing a theoretical model to illuminate their main concern.Methods: Field observations and semi-structured interviews were conducted with four patients receiving 24-hourhome care and their HC assistants. Grounded theory methodology was used.Results: The core process identified was Grasping the lifeline, which describes compensatory processes throughwhich patients strived for control and safe care when experiencing a number of exposed states due to inadequatehome care. Patients tried to take control by selecting their own HC assistants and sought safe hands by instructinguntrained HC assistants in care procedures. When navigating the care system, the patients maintained contacts withprofessional care providers and coordinated their own care. When necessary, a devoted HC assistant could takeover the navigating role. The results are illuminated in a theoretical model.Conclusions: The results accentuate the importance to patients of participating in their own care, especially in theselection of HC assistants. The model illustrates some challenging areas for improvement within the organisation of24-hour home care, such as personnel continuity and competence, collaboration, and routines for acute care.Furthermore, it may be used as a basis for reflection during the planning of care for individual patients withinhome care

From risky to safer home care : health care assistants striving to overcome a lack of training, supervision, and support

Patients receiving home care are becoming increasingly dependent upon competent caregivers’ 24-h availability due to their substantial care needs, often with advanced care and home care technology included. In Sweden, care is often carried out by municipality-employed paraprofessionals such as health care assistants (HC assistants) with limited or no health care training, performing advanced care without formal training or support. The aim of this study was to investigate the work experience of the HC assistants and to explore how they manage when delivering 24-h home care to patients with substantial care needs. Grounded theory methodology involving multiple data sources comprising interviews with HC assistants (n19) and field observations in patients’ homes was used to collect data and constant comparative analysis was used for analysis. The initial analysis revealed a number of barriers, competence gap; trapped in the home setting; poor supervision and unconnected to the patient care system, describing the risks associated with the situations of HC assistants working in home care, thus affecting their working conditions as well as the patient care. The core process identified was the HC assistants’ strivings to combine safe home care with good working conditions by using compensatory processes. The four identified compensatory processes were: day-by-day learning; balancing relations with the patient; self-managing; and navigating the patient care system. By actively employing the compensatory processes, the HC assistants could be said to adopt an inclusive approach, by compensating for their own barriers as well as those of their colleagues’ and taking overall responsibility for their workplace. In conclusion, the importance of supporting HC assistants in relation to their needs for training, supervision,and support from health care professionals must be addressed when organising 24-h home care to patients with substantial care needs in the future

Patients in 24-hour home care striving for control and safety

Background: This article concerns Swedish patients receiving 24-hour home care from health care assistants (HCassistants) employed by the municipality. Home care is a complex interactive process involving the patient, family,HC assistants as well as professional care providers. Previous studies exploring patient perspectives on home carehave been based mainly on patient interviews. In contrast, the present study took a broad perspective on patients’experiences and thoughts by combining field observations on care situations with patient and HC assistantinterviews. The aim of the study presented in this article was to promote a new and broadened understanding ofpatients receiving 24-hour home care by constructing a theoretical model to illuminate their main concern.Methods: Field observations and semi-structured interviews were conducted with four patients receiving 24-hourhome care and their HC assistants. Grounded theory methodology was used.Results: The core process identified was Grasping the lifeline, which describes compensatory processes throughwhich patients strived for control and safe care when experiencing a number of exposed states due to inadequatehome care. Patients tried to take control by selecting their own HC assistants and sought safe hands by instructinguntrained HC assistants in care procedures. When navigating the care system, the patients maintained contacts withprofessional care providers and coordinated their own care. When necessary, a devoted HC assistant could takeover the navigating role. The results are illuminated in a theoretical model.Conclusions: The results accentuate the importance to patients of participating in their own care, especially in theselection of HC assistants. The model illustrates some challenging areas for improvement within the organisation of24-hour home care, such as personnel continuity and competence, collaboration, and routines for acute care.Furthermore, it may be used as a basis for reflection during the planning of care for individual patients withinhome care

Tillgänglighet till naturreservat för personer med funktionshinder - riktlinjer och standard

En sammanställning av vilka krav och önskemål som ställs när tillgänglighet för funktionshindrade skall skapas i naturreservat.Regionala inventeringsrapporter import från MDP 2015-05</p

On-the-job training makes the difference: healthcare assistants perceived competence and responsibility in the care of patients with home mechanical ventilation

ObjectivesTo describe and analyse perceived competence and perceived responsibility among healthcare assistants (HC assistants), caring for patients with home mechanical ventilation (HMV) and other advanced caring needs, adjusted for socio-demographic and workplace background factors. DesignA cross-sectional study was conducted including 128 HC assistants employed in Stockholm County, Sweden. MethodsThe HC assistants responded to a study-specific questionnaire on perceived competence and perceived responsibility, provided socio-demographic and workplace background data, as well as information on the patient characteristics for the understanding of their work situations. Descriptive statistics and logistic regression analyses were performed. ResultsEighty per cent of the HC assistants rated their perceived competence as high, and fifty-nine per cent rated their perceived responsibility as high. Fifty-five per cent lacked formal healthcare training, and only one in five of the HC assistants had a formal training equivalent with a licensed practical nurse (LPN) examination. Males lacked formal training to a greater extent than females and rated their competence accordingly. On-the-job training was significantly associated with high ratings on both perceived competence and perceived responsibility, and clinical supervision was associated with high rating on perceived responsibility. ConclusionsHC assistants with limited formal training self-reported their competence as high, and on-the-job training was found to be important. Also, clinical supervision was found important for their perception of high responsibility. In Sweden, HC assistants have a 24-hour responsibility for the care and safety of their patient with HMV and other advanced caring needs. The study results point out important issues for further research regarding formal training requirements as well as the needs for standardised workplace training and supervision of HC assistants. The consequences of transfer of responsibility by delegation from healthcare professionals to paraprofessionals within advanced home care also need further study.Funding Agencies|Stockholm County Council [20100060]; Karolinska Institutet [20100060]</p