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1.
Patient Prefer Adherence ; 18: 275-288, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38333642

RESUMEN

Purpose: There is an increase in the number of men undergoing screening for prostate cancer, and advancements in treatments, which implies current knowledge about symptoms and self-management. This study aims to explore experiences of symptom distress, and self-management strategies during the first year after curatively intended treatment for prostate cancer, as identified by patients and health care professionals. Methods: A qualitative design was used, including data triangulation from individual interviews with patients (n =17) and one focus group interview with healthcare professionals (n =5). Thematic analysis was used. Results: The two main themes were identified: living with the consequences of treatment and navigating a new situation. Living with the consequences of treatment illustrated how losing control of bodily functions such as bladder, bowel, and sexual functions interfered with daily life. A stigma around the disease was described, and a life living in an unfamiliar body challenged ideas of masculinity. The first months after treatment ended was a distressing period related to the abruption in frequent contact with healthcare providers, and concerns about the future. The second theme, navigating a new situation, illustrates that self-management strategies varied, due to individual factors as did the need for tailored information and support provided from healthcare professionals and family, which was highly valued. Information and support were described as complex topics and healthcare professionals emphasized the need for appropriate education for staff to provide proper support to men after ended treatment. Conclusion: Lingering symptoms and concerns were evident during the first year after treatment. Self-management strategies varied, and timely and tailored information and support during the first year were considered highly valued, important, and preferred by patients. Our results indicate that support should be offered immediately after curatively intended treatment.

2.
J Clin Nurs ; 33(6): 2298-2308, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38304937

RESUMEN

BACKGROUND: The survival rate among patients with breast cancer is high. It is well described that after primary treatment patients may experience symptoms and concerns but the needs and resources during the first year to manage everyday life are not well described. AIM: To describe experiences of symptom distress, needs and support during the first year after primary treatment for breast cancer from the perspectives of patients and healthcare professionals. DESIGN: Qualitative descriptive. METHODS: Data collection through individual interviews with patients (n = 17) and a focus group interview with healthcare professionals (n = 7). Data was analysed using thematic analysis and resulted in three themes. RESULTS: The first theme, 'Struggling with symptoms and changes in everyday life' shows how symptoms and concerns interfered with the everyday life of patients and in some situations even impeded them. Patients try to adapt to their new situation by creating new routines and managing symptoms through self-care. The second theme, 'Adaption in a period of uncertainty' describes thoughts about cancer recurrence and doubts about continuing with the endocrine therapy if symptoms prolong. In the third theme, 'Support and need for individualized follow-up care' healthcare professionals described that they provide support by being available and by giving both verbal and written information. Patients expressed that the information could be too general and voiced a need for more individually tailored support. CONCLUSION: During the first year after primary treatment, patients with breast cancer describe how they try to manage by themselves, but express both unmet needs and a wish for extended and more individually tailored support. The healthcare professionals recognised that patients lack a structured plan for the first year and the need for continued support. This stresses a need for development of care models with special consideration towards individualised support after breast cancer treatment. NO PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public involvement in the design or conduct of the study. The interview study was not considered to benefit from involving patients or healthcare professionals when designing the interview guides as they were developed through literature and previous research of patients treated for breast cancer.


Asunto(s)
Neoplasias de la Mama , Investigación Cualitativa , Humanos , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Femenino , Persona de Mediana Edad , Adulto , Anciano , Grupos Focales , Adaptación Psicológica , Apoyo Social
3.
Comput Inform Nurs ; 41(9): 706-716, 2023 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-36749849

RESUMEN

The use of symptom management mobile apps can reduce patients' symptom burden during cancer treatment, but the evidence is lacking about their effect on care. Moreover, if patients' health literacy can be improved, it needs to be more rigorously tested. This study aimed to evaluate patients' perceptions of individualized care and health literacy using an interactive app in two randomized trials. Patients undergoing neoadjuvant chemotherapy for breast cancer (N = 149) and radiotherapy for prostate cancer (N = 150) were consecutively included and randomized into one intervention or control group. Outcome measures were Individualized Care Scale, Swedish Functional Health Literacy Scale, and Swedish Communicative and Critical Health Literacy Scale. In the breast cancer trial, no group differences were observed regarding individualized care or health literacy. Most patients had sufficient health literacy levels. In the prostate cancer trial, intervention group patients rated higher perceived individualized care regarding decision control at follow-up than the control group. Less than half had sufficient health literacy levels and intervention group patients significantly improved their ability to seek, understand, and communicate health information. Education level explained significant variance in health literacy in both trials. Using an interactive app can positively affect individualization in care and health literacy skills among patients treated for prostate cancer, although further research is warranted.


Asunto(s)
Neoplasias de la Mama , Alfabetización en Salud , Aplicaciones Móviles , Neoplasias de la Próstata , Humanos , Masculino , Neoplasias de la Mama/terapia , Neoplasias de la Próstata/terapia , Femenino
4.
JMIR Nurs ; 5(1): e39983, 2022 Aug 11.
Artículo en Inglés | MEDLINE | ID: mdl-35969443

RESUMEN

BACKGROUND: Neoadjuvant chemotherapy (NACT) is often recommended for patients with breast cancer with more aggressive tumor characteristics. As with all chemotherapies, they can cause substantially disturbing symptoms. Most patients receive their treatment as outpatients, which means that they must take responsibility for self-care and management of symptoms at home for a long period. Patients with breast cancer undergoing chemotherapy may not receive sufficient support for management of treatment-related symptoms. For patients undergoing NACT, it has been concluded that information and supportive needs are not always met. In our previous study, the use of mobile health to support patients with breast cancer undergoing NACT reduced symptoms during treatment with the support of an interactive app. Therefore, it is important to investigate how patients experience their care and explore any specific contribution that the app may have brought in care. OBJECTIVE: This study aims to explore patients' experiences of care with or without the support of an interactive app during NACT for breast cancer. METHODS: This qualitative study was part of a larger randomized controlled trial and included 40 individual face-to-face interviews conducted with patients in both intervention and control groups after the end of NACT. The interviews were audio recorded, and the data were analyzed inductively using thematic analysis. RESULTS: No major differences in experience of care were observed between the groups. A total of 4 overarching themes emerged. In the first theme, The health care context, patients described care as assessible, although sometimes there was a lack of time and continuity with nurses. In the second theme, Being a recipient of care, it emerged that the patients experienced a warm and positive atmosphere at the clinics. In the third theme, Taking an active role as a patient, patients described being active in searching for information and various ways of participation in their own care. In the fourth theme, The value of the app, patients who had used the app experienced it as a complementary source of information, creating a sense of security. Using the app provided patients with the support of being contacted by a nurse if needed, enabled self-care, and facilitated the planning of daily activities. CONCLUSIONS: Overall, patients' experiences of care were similar and mostly positive. However, for patients using the app, it provided additional support for information and self-care and enhanced participation in their own care. The easy access to a nurse gave patients a sense of security. The findings suggest integrating an interactive app as a complement to standard care to support patients with breast cancer during treatment. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-DOI: 10.1186/s12885-017-3450-y.

5.
Health Expect ; 25(5): 2485-2491, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35898187

RESUMEN

BACKGROUND: Prostate cancer is one of the most common types of cancer in men and could occur without symptoms. Screening has been debated but remains controversial and, in most countries, organized population-based screening does not exist. The aim of this study was to describe men's experiences of receiving a prostate cancer diagnosis after opportunistic screening. METHODS: This study is a secondary analysis from interviews with 17 men (aged 56-80 years) who had undergone curative treatment for prostate cancer. Data were collected in an urban region of Sweden through interviews conducted face to face or by telephone. An inductive content analysis was used with Consolidated criteria for Reporting Qualitative research as a reporting checklist. RESULTS: Two main categories were identified. Screening is a lifesaver enclosed by ethical dilemmas reflects how men considered screening as a lifesaving test. Testing was surrounded by injustice and an eagerness to encourage other men to undergo screening. Facing challenges during diagnosis reflects the men's experiences of being in an unknown field yet expected to engage in decision-making concerning appropriate treatment. Receiving the diagnosis rendered mixed emotions about having a cancer disease, that the treatment could cause lifelong symptom distress and the men described being hesitant to talk about their diagnosis. CONCLUSIONS: The findings highlight men's opinions about screening and that the lack of routine screening represents injustice. The men considered this as an ethical question of lifesaving justice, while stakeholders may argue that screening could lead to unnecessary suffering and overtreatment. Men do not always talk openly about their diagnosis, linked to the fact that it concerns intimate areas. It is important to balance the information in relation to shared decision-making regarding treatment. Health care professionals have an ethical responsibility to support and coach the patient in their decision. PATIENT OR PUBLIC CONTRIBUTION: This study was based on interviews with men who had experienced a diagnosis of prostate cancer.


Asunto(s)
Detección Precoz del Cáncer , Neoplasias de la Próstata , Masculino , Humanos , Detección Precoz del Cáncer/psicología , Neoplasias de la Próstata/terapia , Investigación Cualitativa , Tamizaje Masivo , Suecia
6.
J Clin Nurs ; 31(11-12): 1428-1439, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-34570928

RESUMEN

BACKGROUND: The concept of sense of coherence explains a person's resources to maintain health during times of considerable strain and is suggested to be applicable in nursing. A summary of how it has been applied and adapted in clinical nursing is warranted for further conceptual development and research. OBJECTIVE: The scoping review aimed to explore how the sense of coherence scale has been used from a clinical nursing research perspective. METHOD: Published articles (N = 2812) through December 2018 were identified in the PubMed, Cinahl and PsychInfo databases. A total of 298 articles were included in the review. A five-stage process was used to extract data based on pre-determined selection criteria. Summative content analysis was used for the categorisation of the data. The PRISMA-ScR checklist was chosen. RESULTS: A majority of the articles were published within the Nordic countries and the short version SOC-13 was the most frequently used scale. Most studies stated the significant relationship of a higher sense of coherence and higher emotional and psychosocial well-being, quality of life, and well-being irrespective of condition. Other articles proposed identifying patients' degree of sense of coherence either to individualise care or to plan an intervention to strengthen sense of coherence. CONCLUSIONS: The sense of coherence scale has been widely used within nursing and identified as an important factor to individualise care. Future research should focus on rigorous intervention studies to determine if recognising patients' degree of sense of coherence in clinical nursing enables tailored care for patients when dealing with a disease-related condition. More evidence is needed when seeking to improve sense of coherence. RELEVANCE TO CLINICAL PRACTICE: These results show an expansion of the concept of sense of coherence and endorses its use in nursing care for identifying patients' needs in the process of presenting individualised care.


Asunto(s)
Atención de Enfermería , Sentido de Coherencia , Humanos , Calidad de Vida , Países Escandinavos y Nórdicos
7.
Nurs Open ; 9(6): 2781-2792, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-34216090

RESUMEN

AIM: To investigate the necessity of an item reduction and to evaluate estimates of dimensionality, reliability and validity of the Health and Suffering Scale among two groups of women, one undergoing rehabilitation for exhaustion and long-lasting pain and one reference group. DESIGN: Psychometric evaluation of the scale using cross-sectional data. METHOD: The Health and Suffering Scale is a self-report scale which measures perceived suffering in relation to health on a semantic visual analogue scale. Classical and modern test theory were applied for item reduction and to explore estimates of reliability and validity. RESULTS: The Health and Suffering Scale was found to be unidimensional, nine of originally twenty items were part of a consistent factor structure and hierarchical order. These items were internally consistent, discriminated between patients and healthy respondents, and had an excellent level of separation of individuals experiencing various levels of health and suffering. Re-test reliability estimates were moderate.


Asunto(s)
Dolor Crónico , Humanos , Femenino , Reproducibilidad de los Resultados , Estudios Transversales , Psicometría/métodos , Dimensión del Dolor
9.
BMC Womens Health ; 21(1): 259, 2021 06 26.
Artículo en Inglés | MEDLINE | ID: mdl-34174840

RESUMEN

BACKGROUND: Despite women are generally overrepresented in behavioral, mental, and musculoskeletal disorders, motherhood as a central part of women's life is poorly understood in relation to exhaustion and long-lasting pain. Mothers' health impairments imply suffering both for herself and her family. A profound understanding of health is needed taking mothers' subjective health experience, their suffering and life situation into account to give women, their families and society better prerequisites to alleviate exhaustion and long-lasting pain. The aim of the study was to describe health and suffering of women and mothers undergoing rehabilitation for long-lasting pain and exhaustion and its correlation with perceived social support. METHODS: The study had a cross-sectional design with an exploratory approach. A main sample consisted of 166 women undergoing rehabilitation for exhaustion and long-lasting pain and a reference sample included 129 women working and studying within health care professions. Both samples included women with and without children. Women's subjective health and suffering was assessed from a caring science perspective using the recently developed and validated Health and Suffering Scale. Two additional scales measuring exhaustion and social support were distributed among the two samples. Descriptive statistics and multiple linear regression models, including health and suffering and perceived social support, were analyzed. RESULTS: Mothers undergoing rehabilitation for pain and exhaustion reported significantly poorer health and more suffering compared to healthy mothers, but similar health and suffering when compared with childless women in rehabilitation. Health and suffering were correlated with perceived social support among both healthy and exhausted mothers. In both samples, the correlation between health and suffering and social support was stronger among mothers than among women without children. CONCLUSIONS: Women and mothers living with exhaustion and long-lasting pain show signs of unbearable suffering and perceived insufficient social support. Social support from various sources particularly helps mothers to create meaning in life and make their suffering bearable. Hence, health care must address the fact that mothers are dependent on their immediate social environment and that this dependency interacts with their health and suffering on an existential level.


Asunto(s)
Dolor Crónico , Madres , Niño , Estudios Transversales , Relaciones Familiares , Femenino , Humanos , Apoyo Social
10.
Patient Educ Couns ; 104(2): 381-386, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-32811748

RESUMEN

OBJECTIVE: Patients' ability to self-monitor symptoms and engage in self-care activities is dependent upon their level of health literacy. Health literacy and self-care ability was compared in men with prostate cancer undergoing radiotherapy that used an app for symptom management with a control group. METHODS: Included were an intervention group (n = 66), who used an app for symptom reporting and support for self-care, and a control group (n = 64). Outcomes were Functional Health Literacy, Communicative and Critical Health Literacy and Appraisal of Self-Care Agency (ASA-A). RESULTS: The intervention group had improved regarding "ability to select information needed from a variety of information sources" (p = .020), "ability to determine the information credible" (p = .041), and "being able to plan and decide what to do to improve health" (p = .004). No inter-group difference was found for ASA-A. CONCLUSIONS: With the support of an app for reporting and managing symptoms, important advanced health literacy skills of selecting, determining, and judging information credible may improve. PRACTICE IMPLICATIONS: Patients undergoing treatment for prostate cancer may benefit from an individualized approach, such as an app, for communication with health care providers and as a source of health information to make decisions about their own health.


Asunto(s)
Alfabetización en Salud , Aplicaciones Móviles , Neoplasias de la Próstata , Humanos , Masculino , Cuidados Paliativos , Neoplasias de la Próstata/radioterapia , Autocuidado
11.
BMC Med Inform Decis Mak ; 20(1): 226, 2020 09 15.
Artículo en Inglés | MEDLINE | ID: mdl-32933500

RESUMEN

BACKGROUND: During the last decade, there has been an increase in studies describing use of mHealth, using smartphones with apps, in the healthcare system by a variety of populations. Despite this, few interventions including apps are targeting older people receiving home care. Developing mobile technology to its full potential of being interactive in real time remains a challenge. The current study is part of a larger project for identifying and managing health concerns via an app by using real-time data. The aim of the study was to describe older people's usage of an app and to evaluate the impact of usage on aspects of health and health literacy over time. METHODS: A quasi-experimental design was employed. Seventeen older people self-reported health concerns via Interaktor twice a week for 3-months and answered questionnaires at baseline, the end of the intervention and at a 6-month follow-up. Logged data on app usage and data on Sense of Coherence, Health Index, Nutrition Form for the Elderly, Geriatric Depression Scale-20, Swedish Communicative and Critical Health Literacy and Swedish Functional Health Literacy were collected and analysed using descriptive and non-parametric inferential statistics. RESULTS: The median usage of the app as intended was 96%. Pain was one of the most reported health concerns and was also the health concern that triggered an alert (n = 33). The older people's communicative and critical health literacy improved significantly over time. Regarding the scores of Sense of Coherence, Health Index, Nutritional Form for the Elderly, Geriatric Depression Scale-20 and Swedish Functional Health Literacy scale, there were no significant differences over time. CONCLUSIONS: The high app usage showed that an app may be a suitable tool for some older people living alone and receiving home care. The results indicate that the usage of Interaktor can support older people by significantly improving their communicative and critical health literacy. Aspects of health were not shown to be affected by the usage of the app. Further research with larger sample is needed for evaluation the effect on health literacy, and which aspects of health of importance to support by an app.


Asunto(s)
Alfabetización en Salud , Servicios de Atención de Salud a Domicilio , Aplicaciones Móviles , Anciano , Anciano de 80 o más Años , Humanos , Teléfono Inteligente , Suecia
12.
J Med Internet Res ; 22(8): e17058, 2020 08 10.
Artículo en Inglés | MEDLINE | ID: mdl-32663140

RESUMEN

BACKGROUND: Using mobile technology for symptom management and self-care can improve patient-clinician communication and clinical outcomes in patients with cancer. The interactive app Interaktor has been shown to reduce symptom burden during cancer treatment. It includes symptom assessment, an alert system for contact with health care professionals, access to self-care advice, and visualization of symptom history. It is essential to understand how digital interventions operate; one approach is to examine engagement by assessing usage and exploring user experiences. Actual usage in relation to the intended use-adherence-is an essential factor of engagement. OBJECTIVE: This study aimed to describe engagement with the Interaktor app among patients with breast or prostate cancer during treatment. METHODS: Patients from the intervention groups of two separate randomized controlled trials were included: patients with breast cancer receiving neoadjuvant chemotherapy (n=74) and patients with locally advanced prostate cancer receiving treatment with radiotherapy (n=75). The patients reported their symptoms daily. Sociodemographic and clinical data were obtained from baseline questionnaires and medical records. Logged data usage was retrieved from the server and analyzed descriptively and with multiple regression analysis. Telephone interviews were conducted with patients about their perceptions of using the app and analyzed using content analysis. RESULTS: The median adherence percentage to daily symptom reporting was 83%. Most patients used the self-care advice and free text message component. Among the patients treated for breast cancer, higher age predicted a higher total number of free text messages sent (P=.04). Among the patients treated for prostate cancer, higher age (P=.01) and higher education level (P=.04), predicted an increase in total views on self-care advice, while higher comorbidity (P=.004) predicted a decrease in total views on self-care advice. Being married or living with a partner predicted a higher adherence to daily symptom reporting (P=.02). Daily symptom reporting created feelings of having continuous contact with health care professionals, being acknowledged, and safe. Being contacted by a nurse after a symptom alert was considered convenient and highly valued. Treatment and time-related aspects influenced engagement. Daily symptom reporting was perceived as particularly meaningful at the beginning of treatment. Requests were made for advice on diet and psychological symptoms, as well as for more comprehensive and detailed information as the patient progressed through treatment. CONCLUSIONS: Patient engagement in the interactive app Interaktor was high. The app promoted patient participation in their care through continuous and convenient contact with health care professionals. The predictive ability of demographic variables differed between patient groups, but higher age and a higher educational level predicted higher usage of specific app functions for both patient groups. Patients' experience of relevance and interactivity influenced their engagement positively.


Asunto(s)
Neoplasias de la Mama/terapia , Neoplasias de la Próstata/terapia , Automanejo/psicología , Evaluación de Síntomas/métodos , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Aplicaciones Móviles , Autocuidado/métodos
13.
JMIR Mhealth Uhealth ; 8(6): e17855, 2020 06 17.
Artículo en Inglés | MEDLINE | ID: mdl-32554375

RESUMEN

BACKGROUND: Pancreatic and periampullary cancers are rare but have high mortality rates. The only hope for cure is surgical removal of the tumor. Following pancreatic surgery, the patients have a great deal of responsibility for managing their symptoms. Patients report a lack of sufficient knowledge of self-care and unmet supportive care needs. This necessitates a health care system responsive to these needs and health care professionals who pay close attention to symptoms. Person-centered care is widely encouraged and means a shift from a model in which the patient is the passive object of care to a model involving the patient as an active participant in their own care. To address the challenges in care following pancreatic cancer surgery, an interactive app (Interaktor) was developed in which patients regularly report symptoms and receive support for self-care. The app has been shown to reduce patients' symptom burden and to increase their self-care activity levels following pancreaticoduodenectomy due to cancer. OBJECTIVE: The aim of the study was to describe how patients used the Interaktor app following pancreaticoduodenectomy due to cancer and their experience with doing so. METHODS: A total of 115 patients were invited to use Interaktor for 6 months following pancreaticoduodenectomy. Of those, 35 declined, 8 dropped out, and 46 did not meet the inclusion criteria after surgery, leaving 26 patients for inclusion in the analysis. The patients were instructed to report symptoms daily through the app for up to 6 months following surgery. In case of alerting symptoms, they were contacted by their nurse. Data on reported symptoms, alerts, and viewed self-care advice were logged and analyzed with descriptive statistics. Also, the patients were interviewed about their experiences, and the data were analyzed using thematic analysis. RESULTS: The patients' median adherence to symptom reporting was 82%. Fatigue and pain were the most reported symptoms. Alerting symptoms were reported by 24 patients, and the most common alert was fever. There were variations in how many times the patients viewed the self-care advice (range 3-181 times). The most commonly viewed advice concerned pancreatic enzyme supplements. Through the interviews, the overarching theme was "Being seen as a person," with the following 3 sub-themes: "Getting your voice heard," "Having access to an extended arm of health care," and "Learning about own health." CONCLUSIONS: Interaktor proved to be well accepted. It made patients feel reassured at home and offered support for self-care. The app facilitated person-centered care by its multiple features targeting individual supportive care needs and enabled participation in their own care. This supports our recent studies showing that patients using the app had less symptom burden and higher self-care activity levels than patients receiving only standard care.


Asunto(s)
Aplicaciones Móviles , Neoplasias Pancreáticas , Anciano , Anciano de 80 o más Años , Fatiga , Femenino , Personal de Salud , Humanos , Masculino , Persona de Mediana Edad , Neoplasias Pancreáticas/cirugía , Autocuidado
14.
Breast ; 51: 85-93, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-32247251

RESUMEN

OBJECTIVES: Neoadjuvant chemotherapy causes distressing symptoms, which have to be managed by patients at home. Assessing and acting upon relevant patient-reported symptoms regularly with the support of mHealth such as apps, has shown to decrease symptom burden and improve health-related quality of life (HRQoL). There is a lack of apps for patients with breast cancer which are tested in rigorous trials and only a few include interactive components for immediate clinical management. The aim of this study was to evaluate whether the use of the interactive app Interaktor improves patients' levels of symptom burden and HRQoL during neoadjuvant chemotherapy for breast cancer. MATERIALS AND METHODS: This randomized controlled trial included patients in an intervention group (n = 74) and a control group (n = 75), recruited at two university hospitals in Stockholm, Sweden. The intervention group used Interaktor for symptom reporting, self-care advice and support from health-care professionals during treatment, and the control group received standard care alone. Self-reported symptoms and HRQoL were assessed at two time points to determine differences between the groups. RESULTS: The intervention group rated statistically significant less symptom prevalence in nausea, vomiting, feeling sad, appetite loss and constipation. Overall symptom distress and physical symptom distress were rated statistically significant lower in the intervention group. Further, emotional functioning was rated statistically significant higher in the intervention group. CONCLUSIONS: By using the Interaktor app in clinical practice, patients get individual support when managing treatment-related symptoms during neoadjuvant chemotherapy for breast cancer, leading to decreased symptom burden and improved emotional functioning.


Asunto(s)
Neoplasias de la Mama/terapia , Aplicaciones Móviles , Medición de Resultados Informados por el Paciente , Telemedicina/métodos , Adulto , Femenino , Humanos , Persona de Mediana Edad , Terapia Neoadyuvante/efectos adversos , Calidad de Vida , Autocuidado , Autoinforme , Suecia/epidemiología
15.
Scand J Caring Sci ; 34(3): 772-781, 2020 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31769888

RESUMEN

THE STUDY'S RATIONALE: The need for home care among older persons is increasing, and mHealth is evolving to help meet the challenge. When developing an app to help maintain their health, it is essential to incorporate older persons' preferences. AIMS AND OBJECTIVES: To describe and evaluate the experiences of self-care support and sense of security among older persons using an interactive app to report health concerns. METHODOLOGICAL DESIGN AND JUSTIFICATION: The study had a descriptive and evaluative design. Qualitative and quantitative methods were applied to achieve a broader understanding. ETHICAL ISSUES AND APPROVAL: Ethical approval was obtained from the Regional Ethical Review Board. The older persons received verbal and oral information about the study and gave written informed consent. RESEARCH METHODS: Questionnaires (n = 17 older persons) answered at baseline, end of the intervention and at a 6-month follow-up were analysed with statistical analysis. Interviews (n = 17 older persons) conducted at the end of the intervention were analysed using a qualitative directed approach. MEASUREMENTS AND INTERVENTION: The questionnaire included the Appraisal of Self-care Agency Scale and a question concerning sense of security. For 3 months, the older persons used an app for regular reporting of health concerns. The app included self-care advice, graphs and a risk assessment model that generated alerts directly to the nurses. RESULTS: The older persons described how self-care and sense of security increased at the end of intervention, but statistically, it was shown to decrease afterwards. STUDY LIMITATIONS: The small sample size for statistical analysis. CONCLUSIONS: This study shows that an app can be a complementary tool to conventional home care that can increase older persons' sense of security and self-care ability. The results mirror the older persons' awareness that the support they received with the app was only temporary. Larger studies are needed for generalisation.


Asunto(s)
Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Aplicaciones Móviles/estadística & datos numéricos , Seguridad del Paciente/estadística & datos numéricos , Autocuidado/psicología , Apoyo Social , Telemedicina/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Encuestas y Cuestionarios , Suecia
16.
Acta Oncol ; 58(9): 1307-1314, 2019 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31284797

RESUMEN

Background: Patients with pancreatic and periampullary cancer have poor prognoses, experience multiple symptoms following surgery and sometimes lack knowledge of self-care activities. Consequently, it is vital to develop systems that support self-management, improvement of health-related quality of life and reduction of symptoms. Therefore, the aim was to evaluate the impact on health-related quality of life and self-care activity when using the Interaktor app following pancreaticoduodenectomy due to cancer. Material and Methods: Patients in the intervention group used Interaktor up to six months after surgery. They reported symptoms daily at home and received support for self-management by continuous access to written self-care advice and to their healthcare professionals. Descriptive data from the app were collected. Health-related quality of life and self-care activity were collected before surgery, and six weeks and six months after surgery. Comparisons between the intervention group (n = 26) and a historical control group (n = 33) were made. Decline/dropout rate was 37% in the intervention group and 10% in the control group. Results: Six weeks after surgery the intervention group rated significantly higher emotional functioning and less nausea/vomiting, pain, appetite loss, constipation, pancreatic pain, flatulence and worry about low weight. Twenty-five subscales/items showed non-statistical differences. Six months after surgery the intervention group rated significantly fewer hepatic symptoms, less worry about low weight, and higher self-care activity level. Thirty subscales/items showed non-statistical differences. The first four weeks, patients reported symptoms in a median 95% of the intended days, and for the rest of the period in median 83%. Conclusion: The use of an app for management of patient-reported outcomes reduces symptom burdens six weeks after pancreaticoduodenectomy due to cancer. Interaktor is well accepted for patients choosing to participate and appears to facilitate supportive care needs and timely symptom management for this patient group. Future studies should also include cost-benefits and objective measures.


Asunto(s)
Ampolla Hepatopancreática , Neoplasias del Conducto Colédoco/cirugía , Aplicaciones Móviles , Neoplasias Pancreáticas/cirugía , Calidad de Vida , Autocuidado/métodos , Evaluación de Síntomas/métodos , Anciano , Anciano de 80 o más Años , Estudios de Casos y Controles , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pancreaticoduodenectomía , Pacientes Desistentes del Tratamiento/estadística & datos numéricos , Medición de Resultados Informados por el Paciente , Nivel de Atención , Factores de Tiempo
17.
Cancer Nurs ; 42(3): E1-E10, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-29596113

RESUMEN

BACKGROUND: Patients who have undergone pancreaticoduodenectomy because of pancreatic cancer experience distressing symptoms and unmet supportive care needs after discharge. To meet these needs, we have developed a mobile health app (Interaktor) for daily assessment of symptoms and access to self-care advice that includes a risk assessment model for alerts with real-time interactions with professionals. OBJECTIVE: The study aim was to develop and test a version of the Interaktor app adapted for patients who have undergone pancreaticoduodenectomy. METHODS: The app was developed and tested for feasibility in 6 patients during 4 weeks. One nurse monitored and responded to alerts. Logged data from the app were collected, and all participants were interviewed about their experiences. RESULTS: Adherence to reporting daily was 84%. Alerts were generated in 41% of the reports. The patients felt reassured and cared for and received support for symptom management. The app was easy to use, had relevant content, and had few technical problems, although suggestions for improvement were given. CONCLUSIONS: The daily reporting of symptoms and having access to a nurse in real time in the case of an alarming symptom seem to enhance symptom management and render a feeling of security in patients. Some modifications of the app are needed before use in a larger sample. IMPLICATIONS FOR PRACTICE: Daily reporting of symptoms after pancreaticoduodenectomy enhances symptom management, self-care, and participation without being a burden to patients, indicating that mobile health can be used in clinical practice by patients with poor prognosis who experience severe symptoms.


Asunto(s)
Aplicaciones Móviles , Pancreaticoduodenectomía/rehabilitación , Autocuidado/métodos , Teléfono Inteligente , Anciano , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Enfermero-Paciente , Neoplasias Pancreáticas/cirugía , Pancreaticoduodenectomía/enfermería , Medición de Riesgo , Evaluación de Síntomas
18.
Intensive Crit Care Nurs ; 49: 14-20, 2018 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-30241979

RESUMEN

OBJECTIVES: To explore the possible effects of intensive care follow-up visits and diaries on patients physical and psychosocial problems at 2, 6, and 12 months after unit discharge as well as the patient' experiences of follow-up visits and diaries. METHODS: A descriptive and explorative cohort design. Patients (n = 441) with a length of ICU stay for ≥24 hours, who responded to the 3-set 4P questionnaire were included. Patients were divided into groups depending on when they responded to the questionnaire and if had or had not a follow-up visit or a diary. RESULTS: Patients found the follow-up visit and the diary valuable and helpful during the recovery. In the univariate general linear model analyses, the follow-up group reported more problems in Mood and Memory. Longer length of stay was a predictor for unfavourable scoring in the domains Change in Appearance and Memory and for favourable scoring in the domain Social Life. The diary group reported more problems in Change in Appearance, Mood, and Memory and fewer problems in Social Life. CONCLUSION: No strong effects of follow-up or diary on patient outcomes were seen. However, because the patients experienced that the interventions had helped them during recovery, further exploration of the matter is needed in the process of testing these interventions.


Asunto(s)
Continuidad de la Atención al Paciente , Enfermedad Crítica/psicología , Tiempo de Internación , Estudios de Cohortes , Enfermería de Cuidados Críticos , Enfermedad Crítica/enfermería , Femenino , Estudios de Seguimiento , Humanos , Unidades de Cuidados Intensivos , Masculino , Registros Médicos , Persona de Mediana Edad , Calidad de Vida , Encuestas y Cuestionarios , Suecia
19.
Psychooncology ; 27(6): 1615-1621, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29528529

RESUMEN

OBJECTIVE: Sense of coherence (SOC) reflects a person's overall orientation to life. Sense of coherence guides the person in finding and utilizing resources to maintain health and manage stress. Previously, we demonstrated SOC's stability over time among breast cancer (BC) patients, and in the present article, SOC's predictive value for survival is tested. METHODS: A cohort of 487 women underwent surgery for invasive BC and completed preoperatively the SOC-13 within a multicenter trial. Hazard ratios (HRs) were performed to identify significant independent predictors and their association with increase in SOC. RESULTS: Over a median follow-up time of 10 years, patients with a higher SOC had 63% lower risk of BC progression (HR 0.63; 95% CI, 0.11 to 0.85, P .03), 80% lower risk of BC mortality (HR 0.80; 95% CI, 0.38 to 0.96, P .00), and 80% lower risk of all-cause mortality (HR 0.80; 95% CI, 0.47 to 0.93, P .00) than patients with a lower SOC. The mortality risk declined by 2.3% for every 1-unit increase in SOC, both for BC mortality (HR 0.98; 95% CI, 0.96 to 0.99, P .01) and for all-cause mortality (HR 0.98; 95% CI, 0.96 to 0.99, P .00). The risk of progression declined by 1.4% for every 1-unit increase in SOC (HR 0.99; 95% CI, 0.97 to 1.00, P .03). CONCLUSIONS: This study provides evidence of SOC's predictive value for disease progression and BC-caused and all-cause mortality. Sense of coherence provides a complement when designing individual plans that aims to support patients during their treatment.


Asunto(s)
Neoplasias de la Mama/psicología , Supervivientes de Cáncer/psicología , Indicadores de Salud , Sentido de Coherencia , Adulto , Anciano , Supervivientes de Cáncer/estadística & datos numéricos , Estudios de Cohortes , Femenino , Humanos , Persona de Mediana Edad , Estudios Multicéntricos como Asunto , Modelos de Riesgos Proporcionales , Estudios Prospectivos , Medición de Riesgo , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto Joven
20.
Int J Older People Nurs ; 13(2): e12181, 2018 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-29210218

RESUMEN

AIMS AND OBJECTIVES: To explore the experiences of using an app among older people with home-based health care and their nurses. BACKGROUND: Few information and communication technology innovations have been developed and tested for older people with chronic conditions living at home with home-based health care support. Innovative ways to support older people's health and self-care are needed. DESIGN: Explorative qualitative design. METHODS: For 3 months to report health concerns, older people receiving home-based health care used an interactive app, which included direct access to self-care advice, graphs and a risk assessment model that sends alerts to nurses for rapid management. Interviews with older people (n = 17) and focus group discussions with home care nurses (n = 12) were conducted and analysed using thematic analysis. RESULTS: The findings reveal that a process occurs. Using the app, the older people participated in their care, and the app enabled learning and a new way of communication. The interaction gave a sense of security and increased self-confidence among older people. The home care nurses viewed the alerts as appropriate for the management of health concerns. However, all participants experienced challenges in using new technology and had suggestions for improvement. CONCLUSIONS: The use of an app appears to increase the older people's participation in their health care and offers them an opportunity to be an active partner in their care. The app as a new way to interact with home care nurses increased the feeling of security. The older people were motivated to learn to use the app and described potential use for it in the future. IMPLICATIONS FOR PRACTICE: The use of an app should be considered as a useful information and communication technology innovation that can improve communication and accessibility for older people with home-based health care.


Asunto(s)
Servicios de Salud para Ancianos , Servicios de Atención de Salud a Domicilio , Aplicaciones Móviles , Relaciones Enfermero-Paciente , Anciano , Anciano de 80 o más Años , Grupos Focales , Humanos , Entrevistas como Asunto , Investigación Cualitativa , Medición de Riesgo , Autocuidado , Suecia
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