| 1. |
- Hjorth, Maria
(författare)
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Daily Experiences and Perceived Quality of Care for Patients with Liver Cirrhosis
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim and methods: This thesis aimed to study patients’ experiences with illness in their day-to-day lives and their perceived quality of care before and after implementing a 24-month adjunctive registered nurse-based outpatient intervention in liver cirrhosis. Qualitative data was used to explore patient perspectives on day-to-day life and healthcare experiences related to liver cirrhosis. The patient-perceived quality of care following the adjunctive registered nurse-based outpatient care was studied in a pragmatic, randomised controlled multicentre study, preceded by a study protocol.Results: Liver cirrhosis led to physical symptoms sometimes appearing rapidly. Fatigue, fear and social stigma affected daily life, resulting in cancelled activities and creating an unpredictable daily life situation. Patients with liver cirrhosis lacked adequate support to learn about the disease and manage it. They sought a trustworthy relationship with healthcare providers. When this was lacking, they felt neglected. After 12 months, the adjunctive registered nurse-based outpatient care revealed an improvement in patient-perceived quality of care. Enhancements were observed in 7 out of 22 questionnaire items regarding: patient participation, access to outpatient care, and feeling understood. However, these improvements were not sustained after 24 months.Conclusions: Fluctuating liver cirrhosis symptoms and constant worry significantly impact patients’ daily lives. Patients expressed a wish to be more involved in their healthcare and support in understanding and managing their illness. Structured registered nurse-based outpatient care for liver cirrhosis could complement physician-based care to meet patient desires for a more person-centred approach, continuity and care coordination.
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| 2. |
- Hjorth, Maria, et al.
(författare)
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Feeling safe or falling through the cracks – Patients’ experiences of healthcare in cirrhosis illness: A qualitative study
- 2023
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:4
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionPatients with cirrhosis have a long-lasting relationship with medical personnel. Hierarchy in the healthcare contacts and feeling stigmatised may affect the patient’s interactions with these care providers. Despite healthcare professionals’ awareness of patients’ increased self-care needs, patients report getting insufficient information and support. The patients’ expectations and experiences of interacting with healthcare professionals in cirrhosis care is hence a research area that needs further investigation.PurposeTo capture patients’ descriptions of healthcare experiences in relation to cirrhosis illness.Material and methodsData comprise semi-structured interviews (N = 18) and open-ended questionnaire responses (N = 86) of patients with cirrhosis. Braun and Clarke’s thematic analysis process was used, including both semantic and inductive elements. The study is reported following the COREQ guidelines.FindingsThe analysis resulted in two themes: 1) Struggle to be in a dialogue and 2) Being helped or harmed. Six sub-themes were identified concerning aspects of experiences within each theme during the analysis. These sub-themes included: ‘getting information’, ‘being involved’, ‘being perceived as a person’, ‘enduring care’, ‘feeling lost in the healthcare organisation’, and ‘not being taken care of’.ConclusionsPatients with cirrhosis express concerns regarding where to turn in the continuum of cirrhosis care. They emphasise the importance of being involved in the dialogue with the healthcare professional, to be perceived as a person with a unique need to be informed. The healthcare organisation and continuity of care are either viewed as confusing or as helping to shape a safe and trustful contact, which was an important difference in feeling helped or harmed. Hence, patients wished for improved collaboration with healthcare professionals and to receive increased information about their disease. Person-centred communication in nurse-led clinics may increase patient satisfaction and prevent patients from falling through the cracks.
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| 3. |
- Hjorth, Maria, et al.
(författare)
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Liver cirrhosis turns life into an unpredictable roller-coaster : A qualitative interview study.
- 2020
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 29, s. 4532-4543
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To explore how persons living with liver cirrhosis experience day-to-day life.BACKGROUND: Liver cirrhosis is the sixth most common cause of death among adults in Western countries. Persons with advanced liver cirrhosis report poor quality of life, in comparison with other chronic diseases. However, knowledge regarding day-to-day life during earlier stages of the disease is lacking. In other chronic diseases, the suffering process is well explored, while in liver cirrhosis suffering is insufficiently investigated.DESIGN: An exploratory study, with a qualitative inductive interview approach.METHODS: A purposive maximum variation sample of 20 informants with liver cirrhosis aged 25-71, from two gastroenterology outpatient clinics in mid-Sweden, were interviewed from September 2016 to October 2017. Interview data were analysed inductively with qualitative content analysis. Reporting followed the COREQ guidelines.RESULTS: The experiences of day-to-day life living with liver cirrhosis comprised four sub-themes. Living with liver cirrhosis implied varying levels of deterioration, the most apparent being exhaustion or tiredness. The informants had to find ways of adapting to a new life situation. The insecurity of future health evoked existential reflections such as feeling emotionally and existentially distressed. Shame and guilt were reasons for feeling stigmatised. These sub-themes emerged into one overarching theme of meaning: life turns into an unpredictable roller-coaster. This is based on experiences of liver cirrhosis as an unpredictable disease with fluctuating symptoms, worries and disease progression.CONCLUSION: Living with cirrhosis implies an unpredictable condition with a progressive, stigmatising disease. The fluctuating symptoms and deep concerns about future life pose an increased personal suffering.RELEVANCE TO CLINICAL PRACTICE: Within healthcare, knowledge of the person's experience is vital to enable and fulfil the person's healthcare needs. Clinical registered nurses need a person-centred approach to strengthen their patients to cope with their new life situation.
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| 4. |
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| 5. |
- Hjorth, Maria, et al.
(författare)
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Nurse-led clinic for patients with liver cirrhosis-effects on health-related quality of life : study protocol of a pragmatic multicentre randomised controlled trial
- 2018
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 8:10
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Liver cirrhosis affects health-related quality of life (HRQoL) even in its early stages. Morbidity is especially high when the disease decompensates and self-care actions become essential. Nurse involvement in secondary prevention in other chronic diseases has contributed to better symptom control, less need of inpatient care and improved HRQoL. In order to evaluate the impact of nurse involvement in the follow-up of patients with liver cirrhosis, we decided to compare structured nurse-led clinics, inspired by Dorothea Orem's nursing theory and motivational strategies, with a group of patients receiving standard care. The primary outcome is HRQoL and the secondary outcomes are quality of care, visits to outpatient clinics or hospitals, disease progress and health literacy.METHODS AND ANALYSIS: This is a pragmatic, multicentre randomised controlled study conducted at six Swedish hepatology departments. Eligible patients are adults with diagnosed cirrhosis of the liver (n=500). Participants are randomised into either an intervention with nurse-led follow-up group or into a standard of care group. Recruitment started in November 2016 and is expected to proceed until 2020. Primary outcomes are physical and mental HRQoL measured by RAND-36 at enrolment, after 1 and 2 years.ETHICS AND DISSEMINATION: The study is ethically approved by the Regional Ethical Review Board in Uppsala. The results shall be disseminated in international conferences and peer-reviewed articles.TRIAL REGISTRATION NUMBER: NCT02957253; Pre-results.
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| 6. |
- Hjorth, Maria, et al.
(författare)
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Patient perceived quality of cirrhosis care – adjunctive nurse-based care versus standard medical care : a pragmatic multicentre randomised controlled study
- 2024
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Ingår i: BMC Nursing. - : BioMed Central (BMC). - 1472-6955. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundCirrhosis treatment implies prevention and alleviation of serious disease events. Healthcare providers may, however, fail to meet patients’ expectations of collaboration and specific needs of information and support. Individualised nursing care could meet patients’ needs. The aim was thus to measure patient-perceived quality of care after adjunctive registered nurse-based intervention Quality Liver Nursing Care Model (QLiNCaM) compared with standard medical care.MethodsThis pragmatic multicentre study consecutively randomised patients to either adjunctive registered nurse-based care, or standard medical care for 24 months (ClinicalTrials.gov NCT02957253). Patients were allocated to either group at an equal ratio, at six Swedish outpatient clinics during 2016–2022. Using the questionnaire ‘Quality of care from the patient’s perspective’, patients rated their perceived lack of quality for the adjunctive registered nurse-based intervention compared with the control group at 12 and 24 months, respectively.ResultsIn total, 167 patients were recruited. Seven out of 22 items in the questionnaire supported the finding that ‘lacking quality’ decreased with adjunctive registered nurse-based care (p < 0.05) at 12 months follow-up; however, these differences could not be established at 24 months.ConclusionAdditional structured registered nurse-based visits in the cirrhosis outpatient team provided support for improved patient-perceived quality of care during the first 12 months. Registered nurses increase patient involvement and present easy access to cirrhosis outpatient care. Patients express appreciation for personalised information. This study reinforces registered nurses’ role in the outpatient cirrhosis team, optimising patient care in compensated and decompensated cirrhosis.
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| 7. |
- Holmström, Inger, 1960-, et al.
(författare)
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Better safe than sorry : Registered nurses' strategies for handling difficult calls to emergency medical dispatch centres - An interview study
- 2022
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Ingår i: Journal of Clinical Nursing. - : WILEY. - 0962-1067 .- 1365-2702. ; 31:17-18, s. 2486-2494
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives To describe strategies employed by registered nurses for handling difficult calls to emergency medical dispatch centres. Background At emergency medical dispatch centres, registered nurses encounter a range of difficult calls in their clinical practice. They often use clinical decision support systems, but these may be of limited help if the caller is for instance abusive or has limited language proficiency. Much can be learnt from strategies developed by registered nurses for handling difficult calls. Design A descriptive qualitative study was conducted. Methods A purposeful sample of 24 registered nurses from three different emergency medical dispatch centres were interviewed. The transcribed interviews were analysed using qualitative content analysis. The COREQ checklist was applied. Results An overarching theme was established: "Using one's nursing competence and available resources for a safe outcome", based on three sub-themes: Use one's own professional and personal resources, Use resources within the organisation and Use external resources. The themes in turn consist of ten categories. Conclusions Registered nurses employed a range of strategies to deal with difficult calls, often in combination. They used their personal resources, resources within their own organisation, and collaboration partners to make safe triage decisions and use resources wisely. The effectiveness of these strategies, however, remains unknown. When registered nurses were unable to rule out a high-acuity condition, they used safety-netting and sent an ambulance. Evaluating current strategies and making strategies explicit could further improve the ability of nurses to handle difficult calls. Relevance to clinical practice The strategies described by registered nurses for handling difficult calls to EMDCs included using a consecutive set of strategies. Some of the strategies seemed to be used deliberately, while others seemed tacit and applied in a routinised way. These strategies could potentially be useful for RNs working with telephone triage in different contexts.
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| 8. |
- Holmström, Inger K., 1960-, et al.
(författare)
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A survey of nursing teachers’ awareness of discrimination and inequity in telephone nursing care
- 2021
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Ingår i: BMC Nursing. - : Springer. - 1472-6955 .- 1472-6955. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundNursing care should be respectful of and unrestricted by patients’ age, ethnicity, gender, dis/abilities or social status, and such values should be taught to nursing students. Nursing teachers are crucial as role models, and their values are essential. In telephone nursing, only age, sex and ethnicity are known to the registered nurses, which can be challenging. The aim of this study was to explore awareness of discrimination and inequity in telephone nursing among nursing teachers.MethodsA study specific survey was filled in by 135 nursing teachers from three universities in Sweden. The survey included short descriptions of 12 fictive persons who differed in age, ethnicity and sex and with questions about their estimated life situation. The teachers’ estimations of life situation were ranked from lowest probability to highest probability. A ‘good life index’ was constructed and calculated for each fictive person. It included quality of life, power over one’s own life and experience of discrimination.ResultsThe results indicate that the nursing teachers were aware of how power and age, ethnicity and sex are related; that is, they were aware of discrimination and inequity in healthcare. The persons assessed to be most likely to lead a good life were males of Swedish origin, followed by females of Swedish origin. Persons with non-European origin were estimated to have the highest probability of experiencing discrimination.ConclusionsThe nursing teachers were aware of discrimination and inequity in healthcare. They were able to estimate a fictive person’s life situation based on the limited knowledge of age, ethnicity and sex. This is important, as their values are pivotal in theoretical and practical nursing education.
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| 9. |
- Holmström, Inger K., et al.
(författare)
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Nursing students' awareness of inequity in healthcare - An intersectional perspective.
- 2017
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Ingår i: Nurse Education Today. - : Elsevier BV. - 0260-6917 .- 1532-2793. ; 48, s. 134-139
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The overall aim of the present study was to explore awareness of inequity in healthcare and the intersection between different structures of power among nursing students. Another aim was to delineate the knowledge and use of Swedish Healthcare Direct in this group.DESIGN: The study had a descriptive design with a quantitative approach.PARTICIPANTS: The sample consisted of 157 nursing students from three universities in central Sweden.METHODS: The students filled out a study specific questionnaire in class. The questionnaire consisted of short descriptions of twelve fictive persons who differed in gender, age, and ethnicity, with questions about their life situation. The mean was calculated for each assessed fictive person for every item. In the next step, the assessments were ranked from the lowest probability to the highest probability. A 'Good life-index' consisting of quality of life, power over own life, and experience of discrimination, was also calculated. Free text comments were analysed qualitatively.RESULTS: People with Swedish names were assessed to have the highest probability of having a good life. Among those with Swedish names, the oldest woman was assessed as having the lowest probability of a good life. All students had knowledge about Swedish Healthcare Direct, but more female students had used the service compared to male students.CONCLUSIONS: The results indicate that the nursing students had awareness of how power and gender, ethnicity and age, are related. Based on the free text comments, the questions and the intersectional perspective seemed to evoke some irritation which points to their sensitive nature. Therefore, the questionnaire could be used as a tool to start a discussion of equity in healthcare and in interventions where the aim is to raise awareness of inequality and intersectionality.
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| 10. |
- Holmström, Inger, 1960-, et al.
(författare)
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Registered Nurses' experiences of using a clinical decision support system for triage of emergency calls : A qualitative interview study
- 2020
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Ingår i: Journal of Advanced Nursing. - : WILEY. - 0309-2402 .- 1365-2648. ; 76:11, s. 3104-3112
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Tidskriftsartikel (refereegranskat)abstract
- Objectives To describe how Registered Nurses make use of a Clinical Decision Support System to triage calls to emergency medical dispatch centres, from the perspective of professional autonomy. Design The study had a descriptive design with a qualitative inductive approach. Methods Interviews were done with 24 Registered Nurses during 2018-2019. Thematic analysis was conducted. Results Five themes and 16 subthemes were established: (a) Using the CDSS as a general support to professional competence in emergency calls, including subthemes:Support for professional competence,an aid to reflection,a compulsory support; (b) A specific support useful in difficult situations and calls, with subthemes:RN being tired or stressed out;vague and unclear symptoms,rare situations,aggressive and agitated callers; (c) Using the CDSS but changing triage recommendations/priority, including subthemes:Recommending a higher priority than the CDSSandrecommending a lower priority than the CDSS; (d) Development areas for better use of the CDSS in collaboration with other services, with subthemes:Request for common documentation system with ambulancesandcloser collaboration with the national telephone nursing helpline; and (e) Possible technical development areas in the CDSS for optimal use, including subthemes:image transfer,medical records,development of certain areas in the CDSS,update of maps,a need for more knowledge. Conclusion The CDSS was not perceived as a restriction on professional autonomy. It was particularly useful in rare situations. Technical improvements as well as education and training should be done in close collaboration with registered nurses. Impact The study contributes with knowledge about how registered nurses triaging emergency calls use a decision support system. The system was a support for professional competence and did not seem to restrict them. The findings could be useful for clinicians and researchers in development of telephone triage and decision support systems.
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