This study examined privacy legislation in California to identify those electronic Protected Health Information (e-PHI) privacy policies that are suited to seniors using in-home health monitoring systems. Personal freedom and independence are essential to a person's physical and mental health, and mobile technology applications provide a convenient and economical method for monitoring personal health. Many of these apps are written by third parties, however, which poses serious risks to patient privacy. Current federal regulations only cover applications and systems developed for use by covered entities and their business partners. As a result, the responsibility for protecting the privacy of the individual using health monitoring apps obtained from the open market falls squarely on the states. The goal of this study was to conduct an exploratory study of existing legislation to learn what was being done at the legislative level to protect the security and privacy of users using in-home mobile health monitoring systems. Specifically, those developed and maintained by organizations or individuals not classified as covered entities under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The researcher chose California due to its reputation for groundbreaking privacy laws and high population of seniors. The researcher conducted a content analysis of California state legislation, federal and industry best practices, and extant literature to identify current and proposed legislation regarding the protection of e-PHI data of those using in-home health monitoring systems. The results revealed that in-home health monitoring systems show promise, but they are not without risk. The use of smartphones, home networks, and downloadable apps puts patient privacy at risk, and combining systems that were not initially intended to function together carries additional concerns. Factors such as different privacy-protection profiles, opt-in/opt-out defaults, and privacy policies that are difficult to read or are not adhered to by the application also put user data at risk. While this examination showed that there is legislative support governing the development of the technology of individual components of the in-home health monitoring systems, it appears that the in-home health monitoring system as a whole is an immature technology and not in wide enough use to warrant legislative attention. In addition – unlike the challenges posed by the development and maintenance of the technology of in-home health monitoring systems – there is ample legislation to protect user privacy in mobile in-home health monitoring systems developed and maintained by those not classified as covered entities under HIPAA. Indeed, the volume of privacy law covering the individual components of the system is sufficient to ensure that the privacy of the system as a whole would not be compromised if deployed as suggested in this study. Furthermore, the legislation evaluated over the course of this study demonstrated consistent balance between technical, theoretical, and legal stakeholders. This study contributes to the body of knowledge in this area by conducting an in-depth review of current and proposed legislation in the state of California for the past five years. The results will help provide future direction for researchers and developers as they struggle to meet the current and future needs of patients using this technology as it matures. There are practical applications for this study as well. The seven themes identified during this study can serve as a valuable starting point for state legislators to evaluate existing and proposed legislation within the context of medical data to identify the need for legislation to assist in protecting user data against fraud, identity theft, and other damaging consequences that occur because of a data breach.

SAMMANFATTNING Titel: Distriktssköterskans upplevelser av palliativ vård i hemsjukvården Fakultet: Fakulteten för hälsa, natur- och teknikvetenskap Kurs: Examensarbete - omvårdnad, 15hp Författare: Helena Dellgren & Louise Olsson-Öhrn Handledare: Ingela Leibring Examinerande lärare: Brian Unis Examinator: Karin Josefsson Sidor: 27 s., exklusive bilagor Datum för examination: 2022-01-12 Svenska nyckelord: sjuksköterska, upplevelse, palliativ vård, hemsjukvård Introduktion: Palliativ vård i hemsjukvården är en vårdform som allt fler människor väljer. Den ska innefatta ett gott omhändertagande samt professionella bedömningar utifrån patientens fysiska, sociala, psykiska samt existentiella behov. Palliativ vård är en komplext vårdform vilket ställer höga krav på professionen. Syfte: Var att belysa distriktssköterskans upplevelse av palliativ vård i hemsjukvården. Metod: En systematisk litteraturstudie som utgick ifrån Polit & Becks niostegsmodell. Kvalitativ innehållsanalys med kondenserat material enligt Graneheim & Lundman utifrån tio vetenskapliga artiklar framsökta i databaserna Cinahl och Psykinfo. Resultat: Det sammanställda resultatet presenterades i tre kategorier: Upplevda känslor, betydelsen av personliga egenskaper, upplevelser av organisationens betydelse med följande sex underkategorier: medkänslans betydelse, att vara lyhörd och närvarande, behovet av stöd och reflektion, samarbete är en förutsättning, kompetens har betydelse, tiden är avgörande. Konklusion: Tiden är en avgörande faktor och förmågan att känna medkänsla och lyhördhet är en förutsättning vid palliativ vård. Distriktssköterskan ställs ofta inför svåra möten och situationer i sin yrkesroll som kan vara svåra att hantera. Distriktssköterskan upplever bristande kompetens och framhäver behovet av mer utbildning inom palliativ vård / ABSTRACT Title: The district nurse's experiences of palliative care in home health care Faculty: Health, Science and Technology Course: Degree project - nursing, 15 ECTS Authors: Helena Dellgren & Louise Olsson-Öhrn Supervisor: Ingela Leibring Examiner: Brian Unis Examiner: Karin Josefsson Pages: 27 s., exklusive bilagor Date for the examination: 2022-01-12 Key words: nurse, experience, palliative care, home health care Introduction: Palliative care in home health care is a form of care that people mostly choose. It must include good care and assessments that are professional and performed based on the patient's physical, social, mental and existential needs. Palliative care is a complex form of care that places high demands on the profession. Aim: Where to highlight the district nurse's experience of palliative care in home health care. Method: A systematic literature study based on Polit & Beck's nine-step model. Qualitative content analysis with condensed material according to Graneheim & Lundman based on ten scientific articles searched in databases Cinahl and Psycinfo. Result: The compiled results were presented in three categories: Perceived emotions, the importance of personal qualities, experiences of the organization´s importance with the following six subcategories: the importance of compassion, being sensitive and present, the need for support and reflection, cooperation is a prerequisite, competence matters, time is crucial. Conclusion: Time is a decisive factor and the ability to feel compassion and sensitivity is a prerequisite for palliative care. The district nurse are often faced with difficult encounters and situations in their professional role that can be difficult to handle. The district nurse experience a lack of competence and emphasize the need for more education in palliative care

Bakgrund: Flertalet patienter föredrar att dö i hemmet. I samband med en åldrande befolkning samt en ökning av icke-smittsamma och smittsamma sjukdomar ökar behovet av palliativ hemsjukvård globalt. Den palliativa vården syftar till att uppnå bästa möjliga livskvalité för patienten och deras anhöriga, vidare ska vården i ordinärt boende tillgodose patientens behov av kontinuitet, säkerhet och trygghet. Syfte: Syftet med studien var att belysa sjuksköterskans upplevelse av att ge palliativ vård i hemmet. Metod: Studiens metod var en allmän litteraturstudie med syfte att beskriva det aktuella kunskapsläget. Det här genomfördes genom att nio vetenskapliga artiklar plockades ut och bearbetades. Resultat: Ur resultatet framkom tre kategorier: emotionella upplevelser, vikten av samarbete samt utmaningar i hemmiljön. Palliativ vård upplevdes som både givande och krävande. Samarbetet med patient och anhöriga samt samarbetet inom det multiprofessionella teamet var av stor betydelse. Sjuksköterskorna ställs inför olika utmaningar när vården bedrivs i hemmet. Konklusion: Palliativ vård i hemmet ställer höga krav på sjuksköterskans kompetens till följd av patienters komplexa vårdbehov. Därav behövs vidare utbildning, forskning och kunskap inom området. / Background: Several patients prefer to die at home. Associated with an aging population and an increase in non- communicable and communicable diseases, the need for palliative home health care is globally increasing. The aim of palliative care is to achieve the best possible quality of life for the patient and their relatives, furthermore palliative care at home shall satisfy the patients need of continuity, security and safety. Aim: The aim of the study was to illustrate nurses experience of providing palliative care at home. Method: The studies method was a general literature study with the aim to describe the current state of knowledge. This was implemented by selecting and processing nine scientific articles. Results: Three categories were formed from the results: emotional experiences, the importance of cooperation and challenges in the home environment. Palliative care was experienced as both rewarding and requiring. The cooperation with the patient and relatives as well as within the multiprofessional team was important. The nurses faced various challenges when providing care at home. Conclusion: Palliative home health care puts high expectations on the competence of nurses because of the patients complex need for care. Further, more education, research and knowledge in the topic is needed.

Heart failure (HF) affects 6 million Americans, has an expected increasing prevalence in the next 20 years, and has a 5-year mortality rate of 50%. It represents the number one reason for hospitalization in patients older than 65 years. Recent legislation has increased the accountability of care of patients with HF, specifically readmission rates for HF in less than 30 days. This increased focus on HF readmission rates has led many health care organizations to reassess transition-of-care issues (i.e., from home to hospital, from hospital to home) and possible interventions to positively impact these readmission rates. During this process, home health care providers play an integral role and should be aware of possible issues to ensure optimum care for patients.

Skilled home health care (HH) is the largest and fastest growing long-term care setting in the United States. Patients in HH are served by an interprofessional team, and may have little direct contact with physicians, when discussing their progress, prognosis, and goals of care. Such conversations are part of primary palliative care communication. Evidence on primary palliative care communication training in the non-physician HH interprofessional team is lacking. The objectives of this study were to assess the feasibility, acceptability, and preliminary effectiveness of using a palliative care communication model known as COMFORT© to provide palliative care communication training to HH staff. A randomized controlled trial was conducted at a regional health system in the southeastern U.S. to test online training modules (n = 10) (Group 1) and online training modules plus face-to-face training (n = 8) (Group 2). Measures included training completion rates, staff acceptability ratings, comfort with palliative and end-of-life communication (C-COPE) and moral distress (MMD-HP). Results showed that COMFORT© training was feasible (92%), highly acceptable (>4 on a 6-point scale), and positively correlated with improved C-COPE scores (P = .037). There was no significant difference in moral distress scores pre- and post-intervention or in effectiveness between the groups. However, acceptability of COMFORT© was positively correlated with history of leaving or considering leaving a job due to moral distress ( χ 2 = 7.6, P = .02). Preliminary findings from this pilot study suggest that administration of COMFORT© training was feasible, and it was correlated with increased HH staff comfort with palliative care communication.

Bakgrund: Palliativ hemsjukvård är personcentrerad vård som skall lindra och främja en god död i hemmet. Personcentrerad vård ingår i sjuksköterskans kompetensbeskrivning och sjuksköterskan ansvarar för att patienterna får en god och säker vård. Sjuksköterskan skall även värna om patienternas självbestämmande och integritet. För att uppnå ett värdigt slut behövs kännedom om patientens önskningar.  Syfte: Att belysa patienters upplevelser av palliativ vård i hemmet.  Metod: En kvalitativ litteraturöversikt, där tio vetenskapliga artiklar analyserades med Fribergs femstegsmodell. Resultat: I studien framkom sex subtema och tre huvudteman som innehåller: Möjligheter och utmaningar i hemmet, Längtan efter att få vara i centrum av sin vård, Skapa relationer. Resultatet visar att patienter vill vårdas hemma vid livets slut. Däremot framkommer särskilda faktorer som har en avgörande betydelse för upplevelsen av att vårdas hemma vid livets slut. Konklusion: Patienter känner sig trygga med att avsluta livets sista tid i hemmet. Patienters upplevelse av palliativ hemsjukvård påverkas av hemmiljön, samverkan, meningsfullhet och relationer. / Background: Palliative home health care is described as a form of person-centered care that aims to relieve and promote a good death at home. Person-centered care is included in the description of nurse's competence and the nurse is responsible for ensuring that patients receive good and safe care. The nurse must also protect the patients' self-determination and integrity. In order to achieve a dignified end of life, knowledge of the patient's wishes are needed. Aim: To illuminate patients' experience of palliative care at home. Method: A Qualitative literature review. Ten articles were analyzed using Fribergs fivestep method. Findings: The study revealed six subthemes and three main themes that contain: Opportunities and challenges in the home, The desire to be at the center of one's care, Creating relationships. The results show that patients want to be cared for at home at the end of life. On the other hand, special factors emerge that have a decisive importance for the experience of being cared for at home at the end of life. Conclusion: The home is the place where most people want to be cared for at the end of life. Patients' experience of palliative home health care is influenced by the home environment, collaboration, meaningfulness and relationships.

Chronic cardiovascular and pulmonary diseases are prevalent in the US home health population. Heart failure and chronic obstructive pulmonary disease are both chronic and terminal, but they are not always perceived as serious illnesses with imminent death. Therefore, they provide a context for advance care planning that is distinct from the diagnostic contexts of cancer, end-stage renal disease, or dementia. Advance care planning is defined as a process that supports adults at any age or stage of health in understanding and sharing their goals, values, and preferences about future medical care, including the designation of a surrogate decision-maker. This study tests the hypothesis that US home health agencies with higher percentages of patients with chronic cardiovascular and pulmonary conditions have less robust advance care planning protocols. The Spearman correlation coefficient was r = 0.22 (S = 74684, P =.025, 1-tailed), which was statistically significant and an unexpected finding. The greater percentage of patients with chronic cardiac and pulmonary diagnoses in an agency, the more robust the advance care planning protocol was. This supports our previous findings and existing literature indicating that agencies may be using exacerbation events marked by acute care use as opportunities to initiate or repeat advance care planning.

Bakgrund: Allt fler svårt sjuka personer vårdas i hemmet vilket ställer högre krav på personalen som arbetar i hemsjukvården. Forskning visar att patienterna har en positiv uppfattning av hemsjukvården, då de har möjlighet att erhålla en vård de har behov av i hemmet, när de inte kan ta sig till en vårdenhet. I hemsjukvården arbetar flera yrkesgrupper i team och de behöver ha ett personcentrerat förhållningssätt till patienten. I teamet arbetar distriktssköterska/sjuksköterska, arbetsterapeut, fysioterapeut, omvårdnadspersonal, samordnare, enhetschef för hemtjänst samt biståndshandläggare.  Syfte: Syftet med studien är att beskriva distriktssköterskors erfarenheter av teamarbete i hemsjukvården.Metod: Metoden som användes var en kvalitativ intervjustudie med induktiv ansats. Åtta semistrukturerade intervjuer utfördes med distriktssköterskor enskilt och analyserades sedan med en kvalitativ innehållsanalys enligt Graneheim & Lundman (2004).  Resultat: Resultatet visar att det förekommer olika typer av möten mellan teammedlemmarna i hemsjukvården. Kommunikationen är av betydelse för ett fungerande teamarbete. Det finns bristande samsyn i teamet där teammedlemmarna har distans mellan varandra, vilket försvårar samarbetet i teamet. Däremot visar resultatet att arbeta parallellt och över gränserna i teamet främjar god teamsamverkan.  Slutsats: När teamet arbetar tillsammans mot gemensamma mål fungerar hemsjukvården som allra bäst. Teamet behöver ha ett personcentrerat förhållningssätt och göra patienten mer delaktig i teamet. Teammedlemmarna behöver utveckla goda relationer och skapa en förståelse för varandra för att öka vårdkvaliteten. / Background: More seriously ill people are cared for in their own home, which puts higher demands on the staff working in home healthcare. Patients have good experience of home health care because they have the opportunity to receive the care they need at home when they can ́t get to a care unit. In home healthcare, several professionals work in teams with a person-centred approach. The team includes district nurse/registered nurse, occupational therapist, physiotherapist, nursing assistant, coordinator, head of unit for home care and case worker.  Aim: The purpose of the study is to describe district nurses experiences of teamwork in home health care.Method: The method used was a qualitative interviewstudy with an inductive approach. Eight semi-structured interviews of district nurses were carried out individually and then analyzed with a qualitative content analysis according to Graneheim & Lundman (2004).  Results: The results show that there are several different types of meetings between the team members. Communication is important for teamwork. There is a lack of consensus in the team where the team members have distance between each other. Working together by each other's side in the team promotes good team collaboration.  Conclusion: When the team works together towards common goals, home health care works at its very best. The team needs to have a person-centred approach and make the patient more involved in the team. The team members need to develop good relationships and create an understanding of each other in order to increase the quality of care.

Background: In the next thirty years, the world’s elderly population will double which will lead to an increase in patients with cancer in need of palliative care at home. There is limited knowledge about the patient’s perspective of receiving palliative care at home and with the increase of patients in need, the home is likely to become a regular environment for care. It is therefore crucial that we know what aspects of care the patients perceive as contributing to their quality of life. Aim: In this study authors explored and identified the experiences of patients with cancer receiving palliative care at home. Method: This study was based on a qualitative literature study with Friberg’s (2017a) five-step analysis of ten scientific articles. Literature research was done in the databases Cinahl, PsycInfo and Pubmed. Results: Two major themes emerged; home as an environment of care and the nurses’ professional care. The patient experienced their home as a caring and familiar environment anda facilitator of life together with their close relatives and freedom to live as they choose. The nurse was also key in fulfilling the patient’s’ wishes with her competence in professional care and cooperation with close relatives. Conclusion: This study found that to achieve well-being and quality of life in a patients’ last time of their life it is important that the nurse sees the entire person together with close relatives.

Background: During the last decades, advancements has been made in medicine and medical technology which has made it possible to care for elderly persons with multi morbidity in their own homes. The fact that the average length of in-hospital stay has become shorter is also a factor in that home health care has become more common. The medical responsibility for patients in home health care is divided between the home health care organization and the primary care provider, which makes collaboration between these two organizations an important and necessary part of the nurses' job. Ongoing care coordination and collaboration between primary care and home health care is generally described as poor and as an area that requires improvement. Therefore it is important to study nurses' experiences of collaboration in practice. Aim: To describe nurses' experiences of collaboration between primary care and home health care. Method: A semi-structured interview study was conducted with eleven nurses from four health centers and five home health care units in western Sweden. Qualitative content analysis was used to analyze the data.Results: The nurses' experiences of collaboration in practice showed that the medical rounds were a central part of collaboration, that there was a lack of distinct ways of communication and that both organizations were dependent on each other. The results also showed that regulatory systems affected collaboration, that there were boundaries and grey zones between the organizations, that the organizations used different solutions to replace collaboration and that it was important to have knowledge of the other organization. Conclusion: Because the organizations were dependent on each other to give care to the patient and there was a lack of distinct ways of communication, personal relationships became a facilitator for collaboration. Different strategies were used to bypass the obstacles in collaboration. / Andelen äldre personer och personer med kroniska sjukdomar i befolkningen ökar, samtidigt som vårdtiderna i slutenvården förkortas. På grund av den medicintekniska utvecklingen finns det ökade möjligheter att få avancerad sjukvård i hemmet. Hemsjukvården delar det medicinska ansvaret för dessa patienter med primärvården och samverkan dem emellan är därför grundläggande för att kunna ge en god och sammanhållen vård till patienten. Skyldigheten att samverka är reglerat genom lagar och författningar. Trots detta finns det betydande brister i samverkan och vårdkoordinering mellan primärvård och hemsjukvård. För att få en ökad förståelse av detta är det av vikt att ta reda på sjuksköterskors upplevelse av hur samverkan fungerar i praktiken. Resultatet i den här studien bygger på intervjuer med elva sjuksköterskor inom primärvård och hemsjukvård, där de fått beskriva sina upplevelser av samverkan mellan primärvård och hemsjukvård. Resultatet av studien visade att ronden var en central del av samverkan. Det framkom också att sjuksköterskorna ansåg att det saknades tydliga formella kommunikationsvägar, vilket i kombination med att de var beroende av varandra för att ge vård till patienterna gjorde att personliga relationer och olika strategier användes för att förenkla samverkan. Organisationerna kunde också skapa olika alternativa lösningar för att ersätta samverkan mellan primärvården och hemsjukvården. I resultatet framkom att sjuksköterskorna även ansåg att regelverk påverkade samverkan. De tyckte att det var nödvändigt att ha en ram att förhålla sig till, men de ville också kunna vara flexibla vid behov. Detta eftersom de ansåg att det fanns ett gränsland mellan primärvård och hemsjukvård som upplevdes som en gråzon där uppgifter och behov ibland överlappade varandra.