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1.
BMJ Open ; 14(5): e077440, 2024 May 20.
Article in English | MEDLINE | ID: mdl-38772592

ABSTRACT

OBJECTIVE: To investigate health literacy (HL) and digital health literacy (eHL) among patients hospitalised in surgical and medical wards using a cluster analysis approach. DESIGN: Cross-sectional study using Ward's hierarchical clustering method to measure cluster adequacy by evaluating distances between cluster centroids (a measure of cohesion). Different distances produced different cluster solutions. SETTING AND PARTICIPANTS: The study was conducted at a Norwegian university hospital. A total of 260 hospitalised patients were enrolled between 24 May and 6 June 2021. DATA COLLECTION: All data were collected by self-reported questionnaires. Data on HL and eHL were collected by the Health Literacy Questionnaire (HLQ) and the eHealth Literacy Questionnaire (eHLQ). We also collected data on background characteristics, health status and patient diagnosis. RESULTS: We found six HLQ clusters to be the best solution of the sample, identifying substantial diversity in HL strengths and challenges. Two clusters, representing 21% of the total sample, reported the lowest HLQ scores in eight of nine HLQ domains. Compared with the other clusters, these two contained the highest number of women, as well as the patients with the highest mean age, a low level of education and the lowest proportion of being employed. One of these clusters also represented patients with the lowest health status score. We identified six eHL clusters, two of which represented 31% of the total sample with the lowest eHLQ scores in five of seven eHLQ domains, with background characteristics comparable to patients in the low-scoring HLQ clusters. CONCLUSIONS: This study provides new, nuanced knowledge about HL and eHL profiles in different clusters of patients hospitalised in surgical and medical wards. With such data, healthcare professionals can take into account vulnerable patients' HL needs and tailor information and communication accordingly.


Subject(s)
Health Literacy , Hospitalization , Humans , Health Literacy/statistics & numerical data , Female , Cross-Sectional Studies , Male , Middle Aged , Norway , Aged , Adult , Surveys and Questionnaires , Cluster Analysis , Hospitalization/statistics & numerical data , Telemedicine
2.
Patient Educ Couns ; 123: 108207, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38447477

ABSTRACT

OBJECTIVE: This study aimed to evaluate the effect of a new health communication intervention focusing on knowledge management skills on health literacy and medication adherence during the first year following kidney transplantation. METHODS: We randomized 195 patients during 2020-2021, to either intervention- or control group. Questionnaires were completed at baseline and at 12 months post-transplantation with a 12-month response rate of 84%. Health literacy was measured by the multidimensional Health Literacy Questionnaire (HLQ) instrument. Medication adherence was measured by the self-reported questionnaire (BAASIS©). RESULTS: Results showed that the intervention group had a significant increase in 2 HLQ domains compared to the control group capturing the "ability to appraise health information" Domain 5, (p-value = 0.002) and the "ability to navigate the healthcare system" Domain 7, (p-value <0.04). The effect sizes of SRM were 0.49 (Domain 5) and 0.33 (Domain 7). Medication adherence was comparable in the groups at any measure points. CONCLUSIONS: This study contributes to important knowledge about how a health communication intervention focusing on knowledge translation using motivational interviewing techniques positively strengthens health literacy in kidney transplant recipients. PRACTICAL IMPLICATIONS: Current patient education practice may benefit from focusing on knowledge translation in combination with motivational interview technique.


Subject(s)
Health Communication , Health Literacy , Kidney Transplantation , Humans , Research Design , Surveys and Questionnaires , Medication Adherence
3.
Patient Educ Couns ; 123: 108220, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38458089

ABSTRACT

OBJECTIVE: To compare the effect of motivational interviewing (MI) and tailored health literacy (HL) follow-up with usual care on hospitalization, costs, HL, self-management, Quality of life (QOL), and psychological stress in people with chronic obstructive pulmonary disease (COPD). METHODS: A RCT was undertaken in Norway between March 2018-December 2020 (n = 127). The control group (CG, n = 63) received usual care. The intervention group (IG, n = 64) received tailored HL follow-up from MI-trained COPD nurses with home visits for eight weeks and phone calls for four months after hospitalization. Primary outcomes were hospitalization at eight weeks, six months, and one year from baseline. The trial was registered with ClinicalTrials.gov (NCT03216603) and analysed per protocol. RESULTS: Compared with the IG, the CG had 2.8 higher odds (95% CI [1.3 to 5.8]) of hospitalization and higher hospital health costs (MD=€ -6230, 95% CI [-6510 to -5951]) and lower QALYs (MD=0.1, 95% CI [0.10 to 0.11]) that gives an ICER = - 62,300. The IG reported higher QOL, self-management, and HL (p = 0.02- to <0.01). CONCLUSION: MI-trained COPD nurses using tailored HL follow-up is cost-effective, reduces hospitalization, and increases QOL, HL, and self-care in COPD. PRACTICE IMPLICATION: Tailored HL follow-up is beneficial for individuals with COPD and the healthcare system.


Subject(s)
Health Literacy , Pulmonary Disease, Chronic Obstructive , Self-Management , Humans , Quality of Life , Hospitalization , Health Care Costs , Pulmonary Disease, Chronic Obstructive/therapy , Pulmonary Disease, Chronic Obstructive/psychology
4.
BMJ Open ; 13(6): e072753, 2023 06 26.
Article in English | MEDLINE | ID: mdl-37369418

ABSTRACT

OBJECTIVES: Health literacy (HL) related to musculoskeletal disorders (MSDs) in adolescents is a field with limited previous evidence. This study aimed to review and synthesise studies on MSDs and HL as well as various dimensions of HL in adolescents. DESIGN: Scoping review in accordance with Arksey and O'Malleys framework and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. SEARCH STRATEGY: The search strategy was performed in the following databases in November 2021 (initial search) and December 2022 (updated search); Medline, EMBASE, PsychINFO, Cochrane, CINAHL, ERIC, Web of Science and Google Scholar. Eligible studies involving MSDs and HL or either of the HL dimensions related to finding, understanding, appraising or applying health information in adolescents were considered. Any dimension of HL studied, the outcome measure(s) used to assess HL and the type of MSD examined were charted, reviewed and synthesised. A directed content analysis was used for the subjective interpretation of text data. RESULTS: A total of 16 841 studies were identified and 33 were eligible for inclusion. Ten articles presented HL with a definition or description in the theoretical background. The remaining 23 studies involved finding, understanding, appraising or applying health information, without using the term 'health literacy'. Most of the studies addressed how adolescents understand (n=32), and apply (n=23) health information, while few studies focused on how they find (n=11) and appraise (n=7) musculoskeletal health information. CONCLUSION: Few studies have addressed HL and MSDs in adolescents explicitly, while most studies have considered dimensions of HL. Our findings suggest that there is important work to be done to align conceptual understandings with the measurement of HL in adolescents and that further research should be carried out to explore how HL is distributed among adolescents with MSDs and how adolescents living with MSDs report their HL.


Subject(s)
Health Literacy , Musculoskeletal Diseases , Adolescent , Humans
5.
J Pediatr Urol ; 19(3): 293.e1-293.e8, 2023 06.
Article in English | MEDLINE | ID: mdl-36935329

ABSTRACT

BACKGROUND: The importance of patient-reported outcomes (PRO) in hypospadias is increasing. However, more knowledge is needed concerning genital self-perception on appearance and function in adolescents. The complication rates for distal hypospadias is different from that for severe hypospadias, and expected outcomes related to sexual well-being and cosmetics may also differ. OBJECTIVE: To investigate 16-year-olds' self-reported outcomes on penile appearance, sexual well-being, and voiding function in distal hypospadias, and compare with that of healthy male adolescents and a surgeon's view. STUDY DESIGN: Sixteen-year-old patients operated for distal hypospadias were included in this cross-sectional study and compared to a group of healthy adolescents. The assessment tools included the adolescents' self-perception on genital appearance and function measured by Pediatric Penile Perception Score (PPPS) and their responses to a structured interview. We also included information on clinical data from the electronic medical records, together with a physical examination and an uroflowmetry. RESULTS: Seventy patients and 61 healthy adolescents participated. Patients and the comparison group reported no differences on sexual well-being. The patients were satisfied with penile appearance, however their overall PPPS was significantly lower (8.9), compared to the comparison group (9.6, p = 0.03). Thirty-nine percent of patients had complications leading to re-interventions and reported lower scores on genital self-perception on appearance and function compared to those who had not re-interventions. Voiding function was normal. The surgeon's score on appearance was comparable to the patients' score. DISCUSSION: A key finding in our study is the patients' high satisfaction on sexual well-being, which was similar to healthy adolescents. The patients were also satisfied with penile appearance but scored significantly lower than the comparison group. Surgeons and patients had comparable scores on appearance; however, they seemed to emphasize different aspects of appearance. Our results on penile appearance and sexual well-being are comparable to those of other studies on distal hypospadias. In our study, re-interventions were associated with more negative genital self-perception on appearance and function, similar to findings in other studies. CONCLUSION: Our results show overall positive satisfaction on sexual well-being, voiding function and penile appearance despite less satisfaction on penile appearance when compared with the comparison group. Satisfaction was reported to be good also in patients experiencing re-interventions.


Subject(s)
Hypospadias , Humans , Male , Adolescent , Child , Hypospadias/surgery , Cross-Sectional Studies , Surveys and Questionnaires , Penis/surgery , Sexual Behavior
6.
BMJ Open ; 12(10): e063022, 2022 10 27.
Article in English | MEDLINE | ID: mdl-36302571

ABSTRACT

OBJECTIVE: To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health. DESIGN: This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study. SETTINGS: Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway. PARTICIPANTS: People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69). RESULTS: The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual's HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services. CONCLUSION: During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.


Subject(s)
Health Literacy , Pulmonary Disease, Chronic Obstructive , Humans , Quality of Life , Cross-Sectional Studies , Needs Assessment , Pulmonary Disease, Chronic Obstructive/therapy
7.
Transpl Int ; 35: 10404, 2022.
Article in English | MEDLINE | ID: mdl-35707633

ABSTRACT

Liver transplantation (LT) for patients with non-resectable colorectal liver metastases (CRLM) offers improved survival and has gained increased interest internationally the last years. The aim of this study was to describe the health-related quality of life (HRQoL) in patients with non-resectable CRLM receiving LT and how baseline HRQoL factors affect overall survival (OS). HRQoL data in the SECA (SEcondary CAncer) LT cohort was compared to data obtained from colorectal cancer patients starting first-line chemotherapy for metastatic disease in a clinical trial and data from a Norwegian normal population. HRQoL data from the QLQ-C30 questionnaire used in the SECA LT study and the NORDIC- VII study were reported. The relationship between patient-reported symptom burden at baseline and OS was investigated. In the SECA study longitudinal HRQoL assessment was used to describe the time until definitive deterioration as well as mean values at different time points. Patients in the SECA and NORDIC-VII studies reported similar baseline HRQoL. The median time until definitive deterioration in the transplanted patients was estimated to 36 months. In the SECA study appetite loss and pain at baseline had negative impact on OS (25.3 versus 71.7 months, p = 0.002 and 39.7 versus 71.7 months, p = 0.038, respectively). Despite a relapse in most of the LT patients the Global Health Score (GHS) remained good. Pain, and especially appetite loss at time of transplantation is associated with poor outcome after LT.


Subject(s)
Colorectal Neoplasms , Liver Neoplasms , Liver Transplantation , Colorectal Neoplasms/drug therapy , Colorectal Neoplasms/surgery , Humans , Liver Neoplasms/drug therapy , Liver Neoplasms/surgery , Neoplasm Recurrence, Local , Pain , Quality of Life
8.
BMJ Open ; 12(2): e056294, 2022 Feb 14.
Article in English | MEDLINE | ID: mdl-35165112

ABSTRACT

OBJECTIVES: The way health literacy is understood (conceptualised) should be closely linked to how it is measured (operationalised). This study aimed to gain insights into how health literacy is defined and measured in current health literacy research and to examine the relationship between health literacy definitions and instruments. DESIGN: Systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: The MEDLINE, PsycINFO, ERIC and CINAHL databases were searched for articles published during two randomly selected months (March and October) in 2019. ELIGIBILITY CRITERIA: We included articles with a quantitative design that measured health literacy, were peer-reviewed and original, were published in the English language and included a study population older than 16 years. DATA EXTRACTION AND SYNTHESIS: Six researchers screened the articles for eligibility and extracted the data independently. All health literacy definitions and instruments were considered in relation to category 1 (describing basic reading and writing skills, disease-specific knowledge and practical skills) and category 2 (social health literacy competence and the ability to interpret and critically assess health information). The categories were inspired by Nutbeam's descriptions of the different health literacy levels. RESULTS: 120 articles were included in the review: 60 within public health and 60 within clinical health. The majority of the articles (n=77) used instruments from category 1. In total, 79 of the studies provided a health literacy definition; of these, 71 were in category 2 and 8 were in category 1. In almost half of the studies (n=38), health literacy was defined in a broad perspective (category 2) but measured with a more narrow focus (category 1). CONCLUSION: Due to the high degree of inconsistency between health literacy definitions and instruments in current health literacy research, there is a risk of missing important information about health literacy considered be important to the initial understanding of the concept recognised in the studies. PROSPERO REGISTRATION NUMBER: CRD42020179699.


Subject(s)
Health Literacy , Databases, Factual , Humans
9.
Qual Life Res ; 31(3): 659-669, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34350566

ABSTRACT

PURPOSE: Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specific criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. METHODS: A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specific criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. RESULTS: The search identified 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specific limitations and implications was higher in 2018 than in 2008, but there were no differences in the other selected PRO-specific criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included ≥ 300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. CONCLUSION: The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little difference in compliance with the PRO-specific criteria. The studies varied in terms of study design and PRO instruments used in both publication years.


Subject(s)
Neoplasms , Quality of Life , Europe , Humans , Patient Reported Outcome Measures , Quality of Life/psychology , Research Design
10.
BMC Nephrol ; 22(1): 265, 2021 07 15.
Article in English | MEDLINE | ID: mdl-34266414

ABSTRACT

BACKGROUND: Following an implementation plan based on dynamic dialogue between researchers and clinicians, this study implemented an evidence-based patient education program (tested in an RCT) into routine care at a clinical transplant center. The aim of this study was to investigate renal recipients' knowledge and self-efficacy during first year the after the intervention was provided in an everyday life setting. METHODS: The study has a longitudinal design. The sample consisted of 196 renal recipients. Measurement points were 5 days (baseline), 2 months (T1), 6 months (T2), and one-year post transplantation (T3). Outcome measures were post-transplant knowledge, self-efficacy, and self-perceived general health. RESULTS: No statistically significant changes were found from baseline to T1, T2, and T3. Participants' levels of knowledge and self-efficacy were high prior to the education program and did not change throughout the first year post transplantation. CONCLUSION: Renal recipients self-efficacy and insight in post-transplant aspects seem to be more robust when admitted to the hospital for transplantation compared to baseline observations in the RCT study. This may explain why the implemented educational intervention did not lead to the same positive increase in outcome measures as in the RCT. This study supports that replicating clinical interventions in real-life settings may provide different results compared to results from RCT's. In order to gain a complete picture of the impacts of an implemented intervention, it is vital also to evaluate results after implementing findings from RCT-studies into everyday practice.


Subject(s)
Kidney Failure, Chronic , Kidney Transplantation , Patient Education as Topic , Perioperative Period , Quality of Life , Self Efficacy , Adult , Consumer Health Information , Female , Health Literacy , Humans , Kidney Failure, Chronic/psychology , Kidney Failure, Chronic/surgery , Kidney Transplantation/education , Kidney Transplantation/psychology , Longitudinal Studies , Male , Perioperative Period/education , Perioperative Period/psychology
11.
J Pediatr Urol ; 17(4): 555.e1-555.e8, 2021 08.
Article in English | MEDLINE | ID: mdl-33750647

ABSTRACT

BACKGROUND: Genital self-perception and self-reported outcome on sexual function represent important information in studies focusing on male adolescents born with a genital malformation. Normal data from an age-matched control group are essential for comparison and more knowledge is needed concerning age after puberty and before entering adulthood. OBJECTIVE: To investigate the self-reported outcome on genital perception and sexual outcome of healthy male adolescents aged 16 and 17 years. STUDY DESIGN: Sixty-one individuals were included in this cross-sectional study. The assessment tools included the adolescents' self-report on genital perception and sexual function measured by the Pediatric Penile Perception Score (PPPS) and their responses to a semi-structured interview. In addition, we added information on mental health and psychosocial functioning measured by the Strengths and Difficulties Questionnaire, and health-related quality of life (HRQoL) measured by the Pediatric Quality of Life Inventory. Body satisfaction and self-esteem were also measured by the Global Self-Worth and Physical Appearance subscales of the revised version of the Self-Perception Profile for Adolescents (SPPA). RESULTS: Of the 73 individuals invited, a total of 61 participated. The adolescents reported high satisfaction on genital self-perception and sexual function with a score close to 10 on the overall PPPS score (maximum overall score is 12). Participants who were dissatisfied with their genitals reported penile length, alongside foreskin, as their main concern. More than 90% reported satisfaction on sexual function, concerning erection, masturbation, ejaculation, and orgasm. Results showed a higher score on body satisfaction, self-esteem, mental health and psychosocial functioning and a lower score on HRQoL compared to the normative Norwegian data. The small numbers of individuals that scored more negatively on genital self-perception and sexual function also scored more negatively in all items studied. DISCUSSION: A key finding in our study was their high satisfaction on the overall PPPS score and reported sexual function. The results are comparable to other studies related to healthy male adolescents and the sample studied deviate little from a representative Norwegian sample. A comparison group of age-matched adolescents from the normative population is important to determine long-term outcomes on genital appearance and sexual function of patients born with a genital malformation and operated on in early childhood. Limitations of this study are the small sample-size and the lack of information on non-participants. CONCLUSIONS: Our results show generally positive genital self-perception and sexual function in a healthy group of Norwegian male adolescents, aged 16 and 17.


Subject(s)
Personal Satisfaction , Quality of Life , Adolescent , Adult , Child , Child, Preschool , Cross-Sectional Studies , Genitalia , Humans , Male , Self Concept , Sexual Behavior , Surveys and Questionnaires
12.
Patient Educ Couns ; 104(7): 1814-1822, 2021 07.
Article in English | MEDLINE | ID: mdl-33454146

ABSTRACT

OBJECTIVES: The study aimed to identify changes in health literacy (HL) and associated variables during the first year following a kidney transplantation. METHODS: A total of 196 transplant recipients were included in a prospective follow-up study. The patients answered the Health Literacy Questionnaire (HLQ) at 5 days, 8 weeks, 6 and 12 months following the kidney transplantation. Mixed linear models were used to analyze changes in HL and backward elimination was used to identify variables associated with HL. RESULTS: Two main patterns of change were identified: a) HL increased during the first 8 weeks of close follow-up and b) in several domains, the positive increase from 5 days to 8 weeks flattened out from 5 days to 6 and 12 months. Self-efficacy, transplant-related knowledge, and general health were core variables associated with HL. CONCLUSIONS: Overall, HL increased during the 8 weeks of close follow-up following the kidney transplantation, while 6 months seem to be a more vulnerable phase. Furthermore, low self-efficacy, less knowledge, and low self-perceived health may represent vulnerable characteristics in patients. PRACTICAL IMPLICATIONS: Future kidney transplant care should take into account patients' access to and appraisal of health information and social support, and draw attention to potentially vulnerable groups.


Subject(s)
Health Literacy , Kidney Transplantation , Follow-Up Studies , Humans , Prospective Studies , Surveys and Questionnaires
13.
J Dermatolog Treat ; 32(6): 603-609, 2021 Sep.
Article in English | MEDLINE | ID: mdl-31692398

ABSTRACT

BACKGROUND: Patients' ability to perform self-management may be compromised if they are unable to fully comprehend their diagnosis and treatments. Weaknesses in health literacy (HL) pose a considerable health concern and may negatively influence SM, as well as interactions with health care professionals (HCP) and peers. OBJECTIVES: To investigate possible associations between comprehensive HL and psoriasis education from HCPs in a cohort of patients with psoriasis. Another aim was to examine essential sources for psoriasis information and how these are evaluated. METHODS: Cross-sectional questionnaire data, including the comprehensive Health Literacy Questionnaire (HLQ) from 825 patients with psoriasis who had participated in Climate Helio Therapy (CHT). RESULTS: Participants having received HCP education scored significantly better in all HLQ scales compared to participants who did not receive such education (Cohen's effect size: 0.24 to 0.44). The CHT program, peers, and dermatologists were the most important sources of psoriasis information. People having participated more than once in CHT presented better HL scores and also higher self-management (skill and technique acquisition) and more psoriasis knowledge (effect-size: 0.75). CONCLUSIONS: Psoriasis education by HCP seems important for HL and psoriasis knowledge. Patients may need multiple approaches and repetitions over time to be health literate and effective self-managers.


Subject(s)
Health Literacy , Psoriasis , Self-Management , Cross-Sectional Studies , Humans , Psoriasis/therapy , Surveys and Questionnaires
14.
Patient Educ Couns ; 104(3): 517-523, 2021 03.
Article in English | MEDLINE | ID: mdl-33097359

ABSTRACT

OBJECTIVE: To strengthen patients' health literacy and their role as active knowledge actors, we developed a health communication intervention including a film-viewing and counselling session for patients awaiting kidney transplantation. We aimed to explore processes of knowing in the translation of the intervention. METHODS: We applied an ethnographic research approach, observing nine intervention sessions with patients and dialysis nurses. Afterwards, the patients and the nurses were interviewed in-depth. Data were analysed using Engebretsen's modified version of Lonergans' four-step model of knowing. RESULTS: The following knowing processes were identified: i) Knowing as meaning-making; ii) Knowing as acquiring confidence; and iii) Accessing professionals' and peer experts' knowledge. Divergent considerations were taken by the different knowledge actors, which had a direct influence on the knowing processes and knowledge translation. CONCLUSIONS: The findings support active interactions between patients and healthcare providers in processes of knowing. These include self-conscious approaches and critical questioning in both parties. PRACTICE IMPLICATIONS: For transplant professionals, this study demonstrates knowing processes in a real-life context. It also spotlights professional skills and attitudes regarding the importance of self-conscious questioning and a critical interrogating position (for both patients and providers).


Subject(s)
Health Communication , Health Literacy , Kidney Transplantation , Communication , Health Personnel/education , Humans , Renal Dialysis
15.
BMC Health Serv Res ; 20(1): 98, 2020 Feb 10.
Article in English | MEDLINE | ID: mdl-32039723

ABSTRACT

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.


Subject(s)
Chronic Disease/therapy , Health Personnel/psychology , Physician-Patient Relations , Humans , Qualitative Research
16.
Prog Transplant ; 30(1): 38-47, 2020 03.
Article in English | MEDLINE | ID: mdl-31918615

ABSTRACT

BACKGROUND: A kidney transplantation requires complex self-care skills and adequate follow-up from health-care providers. Identifying strengths and limitations in different aspects of health literacy (HL) and associated variables are central to being able to improve health care. The objective of this study was to identify core variables associated with independent domains of HL 8 weeks following a kidney transplantation. METHODS: A single-center cross-sectional study was conducted, wherein 159 kidney transplant recipients answered the Health Literacy Questionnaire (HLQ). Multivariable linear regression with backward elimination was used to investigate variables possibly associated with the 9 domains of HL. RESULTS: The transplant recipients had the lowest scores in "appraisal of health information" and "navigating the healthcare system." The highest scores were found in "feeling understood and supported by health-care providers" and "ability to actively engage with health-care provider." General perceived self-efficacy, transplant-specific knowledge, and general health were the driving variables in several of the HL domains. CONCLUSIONS: The HLQ provides a more complex picture of strengths and limitations related to HL, as well as important knowledge about vulnerable groups following a kidney transplantation. The study offers an important supplement to the field of HL in kidney transplant care.


Subject(s)
Health Knowledge, Attitudes, Practice , Health Literacy , Kidney Transplantation , Transplant Recipients , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Norway , Surveys and Questionnaires , Young Adult
17.
PLoS One ; 14(10): e0223533, 2019.
Article in English | MEDLINE | ID: mdl-31609988

ABSTRACT

The main objective of this study was to explore how kidney transplant recipients find, understand, and use health information, and make decisions about their health-also known as health literacy. Kidney transplant recipients must take an active part in their health following the transplantation, since a new organ requires new medication and focus on lifestyle to prevent side-effects and signs of organ rejection. Consequently, it is of major clinical relevance to explore how kidney transplant recipients understand and relate to health literacy. Ten kidney transplant recipients were interviewed at three weeks and again at six months post-transplantation. Design and analysis were inspired by constructivist grounded theory. The results of the study are presented through a model consisting of three phases: the trigger phase, the information phase, and the response phase. The participants were influenced by context and personal factors as they moved between three phases, as information seekers, recipients, and sharers. This study illustrates health literacy as an active process. It gives new insight into what motivates kidney recipients to find, share, and receive information, and how a hierarchy of resources is built and used.


Subject(s)
Health Literacy , Kidney Transplantation , Models, Theoretical , Adult , Aged , Female , Health Care Surveys , Health Literacy/statistics & numerical data , Humans , Male , Middle Aged
18.
J Thromb Haemost ; 17(10): 1707-1714, 2019 10.
Article in English | MEDLINE | ID: mdl-31265193

ABSTRACT

BACKGROUND: The Villalta scale is recommended for diagnosing and grading of postthrombotic syndrome (PTS) in clinical studies, but with limitations in specificity and sensitivity. OBJECTIVES: To explore the typical complaints of PTS through patients experience and expert opinion and relate this to the items of the Villalta scale. PATIENTS/METHODS: A qualitative study design with focus group interviews including patients with PTS and health care workers experienced in PTS patient care. RESULTS: Typical PTS complaints were reflected within four main domains: (a) agonizing discomforts; patients without venous ulcers often described other discomforts than pain; (b) skin changes; these were common and sometimes present before deep vein thrombosis (DVT). Except for venous ulcers, skin changes were considered of less importance; (c) fluctuating heaviness and swelling during the day and with activity; (d) post-DVT concerns; fear of DVT recurrence, health services failing to meet the patients' expectations, and psychological and social restrictions. These findings are not necessarily captured or well reflected in the Villalta scale. CONCLUSION: Our findings indicate that the Villalta scale does not capture typical PTS complaints or their importance to the patients. A revision of the diagnosis and grading should be considered.


Subject(s)
Attitude of Health Personnel , Patient Reported Outcome Measures , Patient Satisfaction , Postthrombotic Syndrome/diagnosis , Adult , Aged , Cost of Illness , Female , Focus Groups , Humans , Interviews as Topic , Male , Middle Aged , Postthrombotic Syndrome/complications , Postthrombotic Syndrome/psychology , Predictive Value of Tests , Qualitative Research , Quality of Life , Reproducibility of Results , Severity of Illness Index
19.
Blood Press ; 28(5): 327-335, 2019 10.
Article in English | MEDLINE | ID: mdl-31250668

ABSTRACT

Aims: Non-adherence to medication is a key challenge in treatment of hypertensive patients. Directly Observed Therapy prior to ambulatory blood pressure measurement (DOT-HTN) is relatively new in hypertension research and knowledge about its use and patients' perception of such control is warranted. We aimed to investigate DOT-HTN in relation to blood pressure control, procedural safety and patients' perception. Methods and results: Twenty patients with uncontrolled hypertension (daytime systolic ambulatory blood pressure measurement (ABPM) ≥135 mm Hg) were randomized to intervention with DOT-HTN and a visual analogue scale (VAS) assessment if they found DOT-HTN problematic (10 cm = very problematic), or to standard ABPM. They were followed for 2-4 weeks. There were no differences in baseline characteristics. Despite no difference in daytime systolic ABPM (p = 0.67) two patients were suggested to be non-adherent after DOT-HTN with reductions in daytime systolic ABPM of 18 and 22 mm Hg, respectively. No post DOT-HTN adverse reactions were reported. VAS assessment indicated that the patients had no problem being controlled (VAS median 0.30 cm (0.0-2.6)), however interesting comments and observed behaviour questioned the reliability of the patient-reported VAS in 38% of patients. Conclusions: Two of eight patients seemed to be non-adherent after DOT-HTN. Descriptive findings suggested reluctance towards control with DOT-HTN not captured by the VAS assessment. No DOT-related medical adverse-effects were reported.


Subject(s)
Antihypertensive Agents/therapeutic use , Blood Pressure Monitoring, Ambulatory , Directly Observed Therapy , Hypertension/physiopathology , Adult , Blood Pressure , Circadian Rhythm , Female , Humans , Hypertension/drug therapy , Male , Medication Adherence , Middle Aged , Perception , Treatment Outcome
20.
Nurs Open ; 6(2): 260-267, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30918677

ABSTRACT

AIM: Colorectal cancer is one of the most common cancers worldwide. Surgery is seen as the only curative treatment. There are two approaches to liver resection: open or laparoscopic surgery. Knowledge from the patient perspective can illuminate how it is experienced going through laparoscopic surgery. We aimed to study patient perspectives of the experience of undergoing laparoscopic liver resection surgery in patients with colorectal liver metastases. DESIGN: This study has a qualitative research design. Nine patients participated in semi-structured interviews 6 months after surgery. Data were analysed according to Kvale's five-step analysis method. RESULTS: Though the patients were satisfied with the laparoscopic approach, they expressed unmet informational needs about the new technique, time after discharge and surgery outcomes related to having metastatic cancer. Healthcare professionals should provide information and support that recognizes the needs of patients with cancer undergoing laparoscopic liver resection surgery.

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