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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.
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Neoplasias da Mama , Pesquisa Qualitativa , Humanos , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Grupos Focais , Adaptação Psicológica , Apoio SocialRESUMO
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.
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Neoplasias da Mama , Letramento em Saúde , Aplicativos Móveis , Neoplasias da Próstata , Humanos , Masculino , Neoplasias da Mama/terapia , Neoplasias da Próstata/terapia , FemininoRESUMO
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.
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Detecção Precoce de Câncer , Neoplasias da Próstata , Masculino , Humanos , Detecção Precoce de Câncer/psicologia , Neoplasias da Próstata/terapia , Pesquisa Qualitativa , Programas de Rastreamento , SuéciaRESUMO
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.
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Cuidados de Enfermagem , Senso de Coerência , Humanos , Qualidade de Vida , Países Escandinavos e NórdicosRESUMO
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.
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Dor Crônica , Mães , Criança , Estudos Transversais , Relações Familiares , Feminino , Humanos , Apoio SocialRESUMO
[This corrects the article DOI: 10.2196/17058.].
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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.
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Neoplasias da Mama/terapia , Neoplasias da Próstata/terapia , Autogestão/psicologia , Avaliação de Sintomas/métodos , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aplicativos Móveis , Autocuidado/métodosRESUMO
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.
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Letramento em Saúde , Serviços de Assistência Domiciliar , Aplicativos Móveis , Idoso , Idoso de 80 Anos ou mais , Humanos , Smartphone , SuéciaRESUMO
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.
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Serviços de Assistência Domiciliar/estatística & dados numéricos , Aplicativos Móveis/estatística & dados numéricos , Segurança do Paciente/estatística & dados numéricos , Autocuidado/psicologia , Apoio Social , Telemedicina/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Inquéritos e Questionários , SuéciaRESUMO
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.
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Ampola Hepatopancreática , Neoplasias do Ducto Colédoco/cirurgia , Aplicativos Móveis , Neoplasias Pancreáticas/cirurgia , Qualidade de Vida , Autocuidado/métodos , Avaliação de Sintomas/métodos , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pancreaticoduodenectomia , Pacientes Desistentes do Tratamento/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , Padrão de Cuidado , Fatores de TempoRESUMO
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.
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Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Indicadores Básicos de Saúde , Senso de Coerência , Adulto , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Estudos de Coortes , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Multicêntricos como Assunto , Modelos de Riscos Proporcionais , Estudos Prospectivos , Medição de Risco , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Cancer patients are predominantly treated as out-patients and as they often experience difficult symptoms and side effects it is important to facilitate and improve patient-clinician communication to support symptom management and self-care. Although the number of projects within supportive cancer care evaluating mobile health is increasing, few evidence-based interventions are described in the literature and thus there is a need for good quality clinical studies with a randomised design and sufficient power to guide future implementations. An interactive information and communications technology platform, including a smartphone/computer tablet app for reporting symptoms during cancer treatment was created in collaboration with a company specialising in health care management. The aim of this paper is to evaluate the effects of using the platform for patients with breast cancer during neo adjuvant chemotherapy treatment and patients with locally advanced prostate cancer during curative radiotherapy treatment. The main hypothesis is that the use of the platform will improve clinical management, reduce costs, and promote safe and participatory care. METHOD: The study is a prospective, randomised, controlled trial for each patient group and it is based on repeated measurements. Patients are consecutively included and randomised. The intervention groups report symptoms via the app daily, during treatment and up to three weeks after end of treatment, as a complement to standard care. Patients in the control groups receive standard care alone. Outcomes targeted are symptom burden, quality of life, health literacy (capacity to understand and communicate health needs and promote healthy behaviours), disease progress and health care costs. Data will be collected before and after treatment by questionnaires, registers, medical records and biomarkers. Lastly, participants will be interviewed about participatory and meaningful care. DISCUSSION: Results will generate knowledge to enhance understanding about how to develop person-centred care using mobile technology. Supporting patients' involvement in their care to identify problems early, promotes more timely initiation of necessary treatment. This can benefit patients treated outside the hospital setting in regard to maintaining their safety. CLINICAL TRIAL REGISTRATION: June 12 2015 NCT02477137 (Prostate cancer) and June 12 2015 NCT02479607 (Breast cancer).
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Neoplasias da Mama/diagnóstico , Protocolos Clínicos , Detecção Precoce de Câncer , Comunicação em Saúde , Medidas de Resultados Relatados pelo Paciente , Neoplasias da Próstata/diagnóstico , Telemedicina/métodos , Neoplasias da Mama/terapia , Feminino , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Neoplasias da Próstata/terapia , Padrão de Cuidado , Fluxo de TrabalhoRESUMO
PURPOSE: Patients undergoing radiotherapy for prostate cancer suffer from a variety of symptoms which influence health-related quality of life. We have developed an application (Interaktor) for smartphones and tablets for early detection, reporting and management of symptoms, and concerns during treatment for prostate cancer. The study evaluates the effect on symptom burden and quality of life when using the application for real-time symptom assessment and management during radiotherapy for localized prostate cancer. METHODS: A non-randomized controlled study was used at two university hospitals in Sweden where 64 patients constituted a control group and 66 patients made up an intervention group. The intervention group was asked to report symptoms via the application daily during the treatment as well as 3 weeks after. The EORTC QLQ-C30 and its module PR25 and the Sense of Coherence questionnaire were administered at three time points in both groups. RESULTS: The intervention group rated significantly lower levels of fatigue and nausea at the end of radiotherapy. Moreover, they had significantly less burden in emotional functioning, insomnia, and urinary-related symptoms at the end of treatment as well as 3 months later compared with the control group. In the multivariate analyses, with education and sense of coherence as covariates, the intervention group still significantly rated emotional functioning (p = 0.007), insomnia (p = 0.017), and urinary-related symptoms (p = 0.008) as better than the control group at T2. CONCLUSION: Study findings suggest that Interaktor could be an efficient mHealth tool for facilitating supportive care needs during cancer treatment.
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Internet/estatística & dados numéricos , Neoplasias da Próstata/diagnóstico , Qualidade de Vida/psicologia , Smartphone/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Detecção Precoce de Câncer , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/radioterapia , Inquéritos e QuestionáriosRESUMO
AIMS AND OBJECTIVES: To develop and test feasibility and acceptability of an interactive ICT platform integrated in a tablet for collecting and managing patient-reported concerns of older adults in home care. BACKGROUND: Using different ICT applications, for example interactive tablets for self-assessment of health and health issues based on health monitoring as well as other somatic and psychiatric monitoring systems may improve quality of life, staff and patient communication and feelings of being reassured. The European Commission hypothesises that introduction of ICT applications to the older population will enable improved health. However, evidence-based and user-based applications are scarce. DESIGN: The design is underpinned by the Medical Research Council's complex intervention evaluation framework. A mixed-method approach was used combining interviews with older adults and healthcare professionals, and logged quantitative data. METHODS: In cooperation with a health management company, a platform operated by an interactive application for reporting and managing health-related problems in real time was developed. Eight older adults receiving home care were recruited to test feasibility. They were equipped with the application and reported three times weekly over four weeks, and afterwards interviewed about their experiences. Three nurses caring for them were interviewed. The logged data were extracted as a coded file. RESULTS: The older adults reported as instructed, in total 107 reports (Mean 13). The most frequent concerns were pain, fatigue and dizziness. The older adults experienced the application as meaningful with overall positive effects as well as potential benefits for the nurses involved. CONCLUSIONS: The overall findings in this study indicated high feasibility among older adults using the ICT platform. The study's results support further development of the platform, as well as tests in full-scale studies and in other populations. RELEVANCE TO CLINICAL PRACTICE: An ICT platform increased the older adults' perception of involvement and facilitated communication between the patient and nurses.
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Comunicação , Serviços de Assistência Domiciliar , Minicomputadores , Enfermeiras e Enfermeiros/psicologia , Medidas de Resultados Relatados pelo Paciente , Padrões de Prática em Enfermagem , Avaliação de Sintomas/métodos , Adulto , Idoso , Estudos de Viabilidade , Feminino , Humanos , Vida Independente , Internet , Masculino , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Qualidade de Vida , Avaliação de Sintomas/instrumentaçãoRESUMO
AIM AND OBJECTIVES: To acquire knowledge regarding the contents to be implemented in an interactive information and communication technology-platform perceived to be relevant to health and self-care among older persons based on the literature, healthcare professionals and the older persons themselves. BACKGROUND: The growing ageing population places demands on the healthcare system to promote healthy ageing and to strengthen the older person's self-care ability. This requires innovative approaches to facilitate communication between the older person and healthcare professionals, and to increase the older person's participation in their care. An information and communication technology-platform could be used for this purpose, but the content needs to be relevant to both the older persons and the healthcare professionals. DESIGN: Descriptive qualitative design. METHODS: This study was based on three samplings: a scoping review of the literature (n = 20 articles), interviews with healthcare professionals (n = 5) and a secondary analysis of interviews with older persons (n = 8) and nursing assistants (n = 7). The data were analysed using qualitative content analysis. RESULTS: Four areas were identified to be of relevance to older persons' perceived health: frame of mind, having relationships and social activities, physical ability and concerns, and maintaining self-care. Self-care was described in the literature and by the healthcare professionals more than by the older persons. CONCLUSIONS: The results show a concordance in the data samplings that give a clear indication of the areas relevant to older persons' health and self-care that can be integrated in an interactive information and communication technology-platform for use in regular daily care assessments. Descriptions of self-care were limited indicating a possible gap in knowledge that requires further research. RELEVANCE TO CLINICAL PRACTICE: Areas relevant to older persons' health and self-care could be used for regular assessment to support and promote healthy ageing.
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Envelhecimento/psicologia , Comunicação , Relações Profissional-Paciente , Qualidade de Vida , Autocuidado , Atividades Cotidianas , Idoso , Avaliação Geriátrica , Nível de Saúde , Humanos , Pesquisa QualitativaRESUMO
PURPOSES: To test the stability of the SOC scale over time and to test the stability of the latent construct in 417 breast cancer patients at the time of diagnosis, after 1 year and in a subsample (n = 80) also 2 and 3 years later. METHODS: The 13-item SOC scale was firstly tested with mean values and ICC over time and secondly explored with cross-sectional factor analysis, separately for two time points (baseline and after 1 year), followed by a longitudinal factor analyses. RESULTS: Our results provide support for the stability over time (ICC 0.68, effect size 0.06). The cross-sectional factor analysis revealed a modified three-factor and a second-order factor model meeting criteria for goodness of fit. The longitudinal modified second-order factor model confirmed the construct stability character of the SOC scale with an acceptable goodness-of-fit criteria; X (2)/df = 2.91; GFI = 0.87; RMSEA = 0.07; CFI = 0.84; AIC = 962.3. The proportion of variance (R (2)) was 0.42. CONCLUSIONS: The SOC scale is stable over time when applied to women with breast cancer. The longitudinal factor analysis gives support of a stable latent construct in the second-order factor model, allowing for merging all items to one scale reflecting the theoretical construct of SOC. Measurement errors between some items challenge future studies on alternative factor structures.
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Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Senso de Coerência , Inquéritos e Questionários , Adulto , Idoso , Idoso de 80 Anos ou mais , Axila/cirurgia , Neoplasias da Mama/cirurgia , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Estudos Longitudinais , Linfonodos/cirurgia , Pessoa de Meia-Idade , Modelos Teóricos , Estudos ProspectivosRESUMO
BACKGROUND: There is disagreement among studies of health-related quality of life (HRQoL) changes in breast cancer patients over time. Reportedly, assessment of HRQoL prior to diagnosis may be crucial to provide a clear point of comparison for later measurements. The aims of this study were (1) to investigate changes in HRQoL, sense of coherence (SOC), spirituality and religious coping in a group of women with breast cancer from the pre-diagnosis phase to 6 months later in comparison with a control group, and (2) to explore the predictor role of SOC, spirituality, and religious coping within the breast cancer group at the 6-month follow-up. METHODS: A sample of women with breast cancer (n = 162) and a matched control group (n = 210) responded to the following instruments on both occasions: the European Organization for Research and Treatment of Cancer QLQ-C30, the SOC Scale, the Spiritual Perspective Scale and the Brief Religious Coping Scale. A series of General Linear Model (GLM) Repeated Measures was used to determine changes between the groups over time. Also, Multiple Linear Regression analyses were applied to each of the HRQoL dimensions, as dependent variable at the 6 months follow-up. RESULTS: Physical and role function, fatigue, and financial difficulties were rated worse by the women with breast cancer during the first 6 months in comparison to the controls, which was both a statistically (p < 0.001) and clinically significant difference. Women had better scores for global quality of life (p < 0.001), and emotional functioning (p < 0.01) during the same period of time. The degree of SOC (p < 0.01) and baseline ratings of several dimensions of HRQoL (p < 0.05) were the most important predictors of HRQoL changes. CONCLUSIONS: Collecting HRQoL data before a final diagnosis of breast cancer is important to identify women at risk of deterioration in HRQoL during and after treatment. Special attention should be paid to physical and role functioning impairment, fatigue, and financial difficulties experienced by these women. These results underscore that the degree of SOC may be more important as a predictor for HRQoL changes in this sample than spirituality and religious coping.
Assuntos
Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Religião e Psicologia , Senso de Coerência , Espiritualidade , Sobreviventes/psicologia , Adaptação Psicológica , Adulto , Feminino , Nível de Saúde , Indicadores Básicos de Saúde , Humanos , Irã (Geográfico) , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
BACKGROUND: In our previous study, we found that the degree of sense of coherence (SOC) and baseline ratings of several dimensions of health-related quality of life (HRQoL) were the most important predictors of HRQoL changes 6 months after the pre-diagnosis period of breast cancer. To find a way to explain these findings, the aim of this study was to explore the mediating effect of the SOC between ratings of HRQoL dimensions before final diagnosis, and ratings of the same dimensions at the 6 months follow up, within a sample of women with breast cancer. METHODS: A longitudinal study with a prospective design at baseline (T1) and 6 months later (T2) was conducted on 162 women with breast cancer. To measure HRQoL dimensions three different questionnaires, the European Organization for Research and Treatment of Cancer QLQ-30, the SF-12 Health Survey version 2 and the Health Index were applied at T1 and T2 to cover both diagnostic-specific and generic dimensions. Measurement of the SOC as a mediator was done by the SOC-13 scale. RESULTS: Mediational analyses on eight significant pairs of HRQoL dimensions showed that the degree of SOC totally mediated variations of global quality of life (p < 0.001) as well as cognitive and social functioning (p <0.05) scores between T1 to T2. Changes in the scores of emotional functioning (p < 0.01), fatigue (p < 0.05), financial difficulties (p < 0.05), well-being (p < 0.001), and mental health component (p < 0.001) were partially mediated. The degree of SOC explained 16% to 45% of the variances in HRQoL dimensions at T2. CONCLUSIONS: The mediating pathway of the SOC in the context of this study appears to be the key to understanding how a higher sense of coherence as an inner resource may serve as a protective psychological factor in the adaptation process of the patients. Clinicians might consider coherence-oriented structure of the SOC and the connection between the SOC and HRQoL data in intervention plans from the first visit onwards. It may assist the identification of women who are at greater risk for maladaptation to the breast cancer trajectory.
Assuntos
Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Autoeficácia , Senso de Coerência , Espiritualidade , Adaptação Psicológica , Adulto , Idoso , Atitude Frente a Saúde , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Estudos Prospectivos , Projetos de Pesquisa , Inquéritos e QuestionáriosRESUMO
PURPOSE: The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement properties of the SOC scale using the Rasch measurement model. METHODS: SOC questionnaires from a sample of 623 healthy adults were analysed using Rasch analysis. Aspects analysed were rating scale functioning, item fit, unidimensionality, differential item functioning (DIF), targeting, and reliability. RESULTS: Rating scale analysis showed that the seven scale steps were not utilized in the intended manner and that a shortening to five categories would be beneficial. Twelve out of the 13 items showed acceptable goodness-of-fit and 43% of the variance was explained by the SOC dimension in the principal components analysis. There was no DIF between subgroups in the sample. The items were well targeted to the sample SOC level with no ceiling or floor effects. Item and person reliability were good and the person separation index was 2.05 indicating that the scale can separate three different levels of SOC, which corresponds well to its theoretical base. CONCLUSIONS: The SOC scale is generally well functioning; however, the three components of SOC seem to influence the PCA results. The scale would benefit from a reduction from seven to five scale steps, which would need to be investigated further.
Assuntos
Modelos Psicológicos , Psicometria , Senso de Coerência , Inquéritos e Questionários , Adulto , Idoso , Feminino , Humanos , Masculino , Análise de Componente Principal , Qualidade de Vida , Reprodutibilidade dos Testes , SuéciaRESUMO
AIM: The COMFORT behavioural scale was developed to assess sedation, pain and distress in children unable to report pain. Our aims were to test construct validity of the scale in toddlers undergoing minor surgery and determine the inter-rater reliability of the scale. METHODS: We consecutively enrolled 45 children aged 12-36 months from a Norwegian surgical outpatient care unit. The level of sedation, pain and distress was assessed before and after surgery with the COMFORT behavioural scale. Inter-rater reliability was estimated and construct validity was tested based on a priori defined hypotheses. A 2.5-point (15%) change in the scale was considered clinically important. RESULTS: We obtained 307 scores covering most of the scale's range, but a floor effect was clearly present. Inter-rater reliability was high between assessors (intraclass correlation coefficient = 0.96; 95% CI 0.92-0.98). Clinically important differences were seen between baseline and light sedation (3.1 points, p < 0.001) and between light and deep sedation (4.6 points, p = 0.002). The difference between baseline and our definition of a pain/distress state was not clinically important (1.5 points, p = 0.039). CONCLUSION: The COMFORT behavioural scale can provide one aspect of an overall clinical assessment of sedation, and probably pain and distress, in toddlers before and after surgery.