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1.
J Pain ; 2024 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-38341015

RESUMO

Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people's experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient's experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.

2.
Health Informatics J ; 30(1): 14604582241231151, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38308637

RESUMO

People commonly and increasingly rely on the internet to search for health information, including those related to endometriosis-associated dyspareunia. Yet the content of such websites may be of variable accuracy and quality. This review aims to evaluate the quality, readability, and suitability of web-based resources on endometriosis-associated dyspareunia for patients. We searched 3 databases - Google, Bing, and Yahoo - to identify websites related to endometriosis-associated dyspareunia. Two independent reviewers screened the search results against inclusion and exclusion criteria. Another set of two reviewers evaluated the selected websites using validated measurement instruments. Out of 450 websites, 21 met the inclusion criteria and were evaluated. More than half of the websites had information on content updates, reported on authorship, or disclosed sponsorship information. The mean quality and suitability scores were 47.5 (SD = 13.3) and 65.2 (SD = 13.6) respectively, thus suggesting generally adequate quality and suitability levels. However, the mean readability scores exceeded the recommended level for health-related websites. The poor readability of the websites might limit accessibility for a significant proportion of patients with low educational levels. The findings of this review have implications for designing high-quality, readable and up-to-date web interventions for people who rely on web platforms as an alternative or complementary source of health information on dyspareunia.


Assuntos
Informação de Saúde ao Consumidor , Dispareunia , Endometriose , Feminino , Humanos , Compreensão , Endometriose/complicações , Dispareunia/etiologia , Dispareunia/terapia , Internet
3.
Health (London) ; : 13634593241226646, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38234164

RESUMO

This paper explores temporalities and experiences of time drawn from an analysis of interview data from a critical narrative inquiry of the experiences of young adults living with home mechanical ventilation (HMV). The analysis centers the ideological effects of dominant discourses that shape understandings of time in the Euro-Western world and the ways in which young adults' stories prompt a rethinking of time in health research and praxis. Data generation involved interviews and photo-elicitation with five young adults (ages 18-40). A critical narrative analysis of participants' stories surfaced the influence of ableist, developmentalist, and neoliberal discourses of time and the creative resistance that points to the potential of crip orientations to time in opening up possibilities for living. Implications for practice and research are offered.

4.
Qual Health Res ; 34(1-2): 72-85, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37844970

RESUMO

Young adults (YAs), defined as individuals between the ages of 18 and 39 years, experience unique challenges when diagnosed with advanced cancer. Using the social constructivist grounded theory approach, we aimed to develop a theoretical understanding of how YAs live day to day with their diagnosis. A sample of 25 YAs (aged 22-39 years) with advanced cancer from across Canada participated in semi-structured interviews. Findings illustrate that the YAs described day-to-day life as an oscillating experience swinging between two opposing disease outcomes: (1) hoping for a cure and (2) facing the possibility of premature death. Oscillating between these potential outcomes was characterized as living in a liminal space wherein participants were unsure how to live from one day to the next. The participants oscillated at various rates, with different factors influencing the rate of oscillation, including inconsistent and poor messaging from their oncologists or treatment team, progression or regression of their cancer, and changes in their physical functioning and mental health. These findings provide a theoretical framework for designing interventions to help YAs adapt to their circumstance.


Assuntos
Neoplasias , Humanos , Adulto Jovem , Adolescente , Adulto , Neoplasias/psicologia , Saúde Mental , Canadá
5.
Digit Health ; 9: 20552076231205278, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37900258

RESUMO

Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white (p < .001), women (p < .001), and Canadian-born (p < .001); to speak English at home (p < .001), live alone (p = .001) and live in rural settings (p = .014); and to be farther from diagnosis (p = .023), diagnosed with breast cancer (p < .001), and cancer free (p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness (p < .001), and lower social support (p < .001), self-efficacy for coping with cancer (p < .001), and life satisfaction (p = .006). Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

6.
PLOS Digit Health ; 2(7): e0000223, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37436972

RESUMO

OBJECTIVE: Stigma has been recognized as a significant issue in sexual health, yet no specific guidelines exist to support digital health development teams in creating stigma-alleviating sexual health digital platforms. The purpose of this study was to develop a set of design guidelines that would serve as a reference point for addressing stigma during the design of sexual health-related digital platforms. MATERIALS AND METHODS: We conducted a 3-round Delphi study among 14 researchers in stigma and sexual health. A preliminary list of 28 design guidelines was generated from a literature review. Participants appraised and critiqued the clarity and usefulness of the preliminary list and provided comments for each item and for the overall group of items at each round. At each round, a content validity index and an interquartile range were calculated to determine the level of consensus regarding the clarity and usefulness of each guideline. Items were retained if there was high consensus or were dropped if there was no consensus after the three rounds. RESULTS: Nineteen design guidelines achieved consensus. Most of them were content-related guidelines and sought to address the emotional concerns of patients that could potentially aggravate stigma. The findings also reflected modern stigma management strategies of making stigma a societal attribute by challenging, exposing, and normalizing stigma attributes via web platforms. CONCLUSION: To address stigma via digital platforms, developers should not just concentrate on technical solutions but seriously consider content-related and emotional design components that are likely to result in stigma.

7.
JMIR Form Res ; 7: e37549, 2023 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-36917164

RESUMO

BACKGROUND: Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences. OBJECTIVE: The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers' experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers' willingness to share their stories with broader audiences as a method for knowledge translation. METHODS: This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach. RESULTS: A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants' experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website. CONCLUSIONS: Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.

8.
Int J Equity Health ; 22(1): 20, 2023 01 28.
Artigo em Inglês | MEDLINE | ID: mdl-36709295

RESUMO

BACKGROUND: Despite a publicly-funded healthcare system, alarming cancer-related health and healthcare inequities persist in Canada. However, it remains unclear how equity is being understood and taken up within the Canadian cancer context. Our objective was to identify how health and healthcare equity are being discussed as goals or aims within the cancer care sector in Canada. METHODS: A rapid scoping review was conducted; five biomedical databases, 30 multidisciplinary websites, and Google were searched. We included English-language documents published between 2008 and 2021 that discussed health or healthcare equity in the Canadian cancer context. RESULTS: Of 3860 identified documents, 83 were included for full-text analysis. The prevalence of published and grey equity-oriented literature has increased over time (2008-2014 [n = 20]; 2015-2021 [n = 62]). Only 25% of documents (n = 21) included a definition of health equity. Concepts such as inequity, inequality and disparity were frequently used interchangeably, resulting in conceptual muddling. Only 43% of documents (n = 36) included an explicit health equity goal. Although a suite of actions were described across the cancer control continuum to address equity goals, most were framed as recommendations rather than direct interventions. CONCLUSION: Health and healthcare equity is a growing priority in the cancer care sector; however, conceptual clarity is needed to guide the development of robust equity goals, and the development of sustainable, measurable actions that redress inequities across the cancer control continuum. If we are to advance health and healthcare equity in the cancer care sector, a coordinated and integrated approach will be required to enact transformative and meaningful change.


Assuntos
Equidade em Saúde , Neoplasias , Humanos , Canadá , Disparidades em Assistência à Saúde , Neoplasias/terapia
9.
Chronic Illn ; 19(4): 804-816, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-36426509

RESUMO

OBJECTIVE: Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. METHODS: In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. RESULTS: Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. DISCUSSION: The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.


Assuntos
Estado Terminal , Assistência de Longa Duração , Humanos , Estado Terminal/terapia , Família/psicologia , Cuidadores/psicologia , Pesquisa Qualitativa , Doença Crônica
10.
Curr Oncol ; 29(11): 8180-8196, 2022 10 29.
Artigo em Inglês | MEDLINE | ID: mdl-36354706

RESUMO

Family caregivers of patients with cancer provide substantial physical, emotional, and functional care throughout the cancer trajectory. While caregiving can create employment and financial challenges, there is insufficient evidence to inform the development of caregiver-reported outcomes (CROs) that assess these experiences. The study purpose was to describe the occupational and financial consequences that were important to family caregivers of a patient with colorectal cancer (CRC) in the context of public health care, which represent potential considerations for CROs. In this qualitative Interpretive Description study, we analyzed interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers). Our findings point to temporary and long-term occupational and financial setbacks in the context of CRC. Caregiving for a person with CRC involved managing occupational implications, including (1) revamping employment arrangements, and (2) juggling work, family, and household demands. Caregiver financial struggles included (1) responding to financial demands at various stages of life, and (2) facing the spectre of lifelong expenses. Study findings offer novel insight into the cancer-related occupational and financial challenges facing caregivers, despite government-funded universal health care. Further research is warranted to develop CRO measures that assess the multifaceted nature of these challenges.


Assuntos
Cuidadores , Neoplasias Colorretais , Humanos , Cuidadores/psicologia , Pesquisa Qualitativa , Medidas de Resultados Relatados pelo Paciente
12.
JMIR Hum Factors ; 9(1): e31317, 2022 Mar 03.
Artigo em Inglês | MEDLINE | ID: mdl-35238789

RESUMO

BACKGROUND: Endometriosis is a chronic condition that affects approximately 10% of women worldwide. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but also fuels myths and misconceptions about pain symptoms. At the same time, the use of web-based platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain. OBJECTIVE: The study objective is to evaluate the usability of the website and assess for destigmatizing properties of sexual health-related web-based resources. METHODS: We conducted a usability analysis by using a think-aloud observation, a postsystem usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using the framework by Kushniruk and Patel for analyzing usability video data, the questionnaire data were analyzed using descriptive statistics, and the follow-up interviews were analyzed using simple content analysis. We conducted a usability assessment by deductively analyzing the interview data via a trauma-informed care framework and a content analysis approach. RESULTS: Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation; website response; the comprehension of graphics, icons, and tabs; the understanding of content; and mismatch between the website and users' expectations were reported. In our stigma analysis, we found the web content to be nonstigmatizing. The participants suggested ways in which websites could be designed to address stigma, including ensuring privacy, anonymity, inclusiveness, and factual and nonjudgmental content, as well as providing opportunities for web-based engagement. CONCLUSIONS: Overall, the participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health-related websites can be designed to be acceptable and less stigmatizing to individuals with sensitive health issues.

13.
Curr Oncol ; 29(2): 1163-1175, 2022 02 16.
Artigo em Inglês | MEDLINE | ID: mdl-35200598

RESUMO

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.


Assuntos
Neoplasias , Adolescente , Adulto , Canadá , Estudos Transversais , Feminino , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Adulto Jovem
14.
J Patient Rep Outcomes ; 6(1): 13, 2022 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-35122565

RESUMO

BACKGROUND: The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. RESULTS: From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. CONCLUSIONS: The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.

15.
Int J Sex Health ; 34(1): 144-159, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-38595685

RESUMO

Objective: To review the literature that has examined stigma in relation to the design, impact, and ways web apps can alleviate or aggravate sexual health-related stigma. Methods: Six databases were searched and 17 studies met the inclusion criteria. Results: While two studies were randomized controlled trials, most studies were descriptive or qualitative. Stigma may be alleviated in web apps through sharing stigma-related experiences, receiving emotional support, and providing anonymous virtual connections Yet, stigma may be aggravated by implied disclosure, inappropriate content, and stigma by association. Conlcusions: While web apps were able to address stigma to some extent, some strategies employed inadvertently aggravated stigma.

16.
Stud Health Technol Inform ; 284: 239-243, 2021 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-34920518

RESUMO

User interface evaluation has become important in developing usable health care technologies. Although usability engineering methods have been applied in the design and evaluation of health care software, available heuristics focus on task-work aspects and do not address stigma associated with many health conditions. We used a previous set of heuristics and propose a new set of anti-stigma heuristics to evaluate stigmatization in health care websites. The extended set of heuristics were concurrently applied in a heuristic evaluation and a cognitive walkthrough to evaluate an endometriosis and sexual pain website. The walkthrough involved 5 tasks that required 21 actions to execute. Twenty-six usability problems were identified and recommendations for re-design were made to the design team before end-user testing. The anti-stigma heuristics received worse ratings than the traditional heuristics, resulting in several design changes that might otherwise have been missed. Thus, the new anti-stigma heuristics were a valuable contribution.


Assuntos
Heurística
17.
Curr Oncol ; 28(5): 4184-4202, 2021 10 16.
Artigo em Inglês | MEDLINE | ID: mdl-34677273

RESUMO

Colorectal cancer (CRC) can be demanding for primary caregivers; yet, there is insufficient evidence describing the caregiver-reported outcomes (CROs) that matter most to caregivers. CROs refer to caregivers' assessments of their own health status as a result of supporting a patient. The study purpose was to describe the emotions that were most impactful to caregivers of patients with CRC, and how the importance caregivers attribute to these emotions changed from diagnosis throughout treatment. Guided by qualitative Interpretive Description, we analyzed 25 caregiver and 37 CRC patient interviews, either as individuals or as caregiver-patient dyads (six interviews), using inductive coding and constant comparative techniques. We found that the emotional aspect of caring for a patient with CRC was at the heart of caregiving. Caregiver experiences that engendered emotions of consequence included: (1) facing the patient's life-changing diagnosis and an uncertain future, (2) needing to be with the patient throughout the never-ending nightmare of treatment, (3) bearing witness to patient suffering, (4) being worn down by unrelenting caregiver responsibilities, (5) navigating their relationship, and (6) enduring unwanted change. The broad range of emotions important to caregivers contributes to comprehensive foundational evidence for future conceptualization and the use of CROs.


Assuntos
Cuidadores , Neoplasias Colorretais , Neoplasias Colorretais/terapia , Formação de Conceito , Emoções , Humanos , Medidas de Resultados Relatados pelo Paciente
18.
Nurs Open ; 8(5): 2035-2049, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34388860

RESUMO

AIM: To explore and synthesize the literature on factors related to mammography screening adherence among women in Brazil. DESIGN: A scoping review. METHODS: We searched 11 databases for studies published between 2006-January 2020. All identified articles were screened, and data were extracted from eligible studies. We used the UK Government Social Research Service weight of evidence appraisal tool to appraise the quality of the included study. RESULTS: From a total of 1,384 identified articles, 22 were retained. All included studies used quantitative, non-experimental methods and all but two studies used cross-sectional data. Quality of evidence varied across studies. We identified 41 factors that were investigated across the set of studies. Demographic and socio-economic factors were the most commonly investigated, with older age, urban residence, living in the southeast of Brazil, higher level of education, higher income and private health insurance most consistently associated with mammography adherence.


Assuntos
Detecção Precoce de Câncer , Mamografia , Idoso , Brasil , Estudos Transversais , Escolaridade , Feminino , Humanos
19.
Syst Rev ; 10(1): 169, 2021 06 09.
Artigo em Inglês | MEDLINE | ID: mdl-34108024

RESUMO

BACKGROUND: Substantial literature has highlighted the importance of patient-reported outcome and experience measures (PROMs and PREMs, respectively) to collect clinically relevant information to better understand and address what matters to patients. The purpose of this systematic review is to synthesize the evidence about how healthcare providers implement individual-level PROMs and PREMs data into daily practice. METHODS: This mixed methods systematic review protocol describes the design of our synthesis of the peer-reviewed research evidence (i.e., qualitative, quantitative, and mixed methods), systematic reviews, organizational implementation projects, expert opinion, and grey literature. Keyword synonyms for "PROMs," PREMs," and "implementation" will be used to search eight databases (i.e., MEDLINE, CINAHL, PsycINFO, Web of Science, Embase, SPORTDiscus, Evidence-based Medicine Reviews, and ProQuest (Dissertation and Theses)) with limiters of English from 2009 onwards. Study selection criteria include implementation at the point-of-care by healthcare providers in any practice setting. Eligible studies will be critically appraised using validated tools (e.g., Joanna Briggs Institute). Guided by the review questions, data extraction and synthesis will occur simultaneously to identify biographical information and methodological characteristics as well as classify study findings related to implementation processes and strategies. As part of the narrative synthesis approach, two frameworks will be utilized: (a) Consolidated Framework for Implementation Research (CFIR) to identify influential factors of PROMs and PREMs implementation and (b) Expert Recommendations for Implementing Change (ERIC) to illicit strategies. Data management will be undertaken using NVivo 12TM. DISCUSSION: Data from PROMs and PREMs are critical to adopt a person-centered approach to healthcare. Findings from this review will guide subsequent phases of a larger project that includes interviews and a consensus-building forum with end users to create guidelines for implementing PROMs and PREMs at the point of care. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42020182904 .


Assuntos
Pessoal de Saúde , Medidas de Resultados Relatados pelo Paciente , Coleta de Dados , Atenção à Saúde , Humanos , Assistência Centrada no Paciente , Revisões Sistemáticas como Assunto
20.
Can Oncol Nurs J ; 31(2): 221-227, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34036161

RESUMO

Adjuvant endocrine therapy (AET) is a highly efficacious treatment that significantly reduces breast cancer recurrence and mortality for women with hormone-receptor positive breast cancer. Yet, many women do not adhere to prescribed AET. The overarching aim of this research was to gain a better understanding of why a significant number of women diagnosed with breast cancer have suboptimal adherence to AET. A mixed-methods approach was used to explore the personal, social, and structural factors influencing breast cancer survivors' AET adherence, including: (1) an integrative review of patient-reported factors associated with AET adherence; and (2) interviews with breast cancer survivors prescribed AET. In this paper, we summarize and discuss the key contributions of both phases of this research, implication for clinical practice, and how we might leverage the expertise of nurses in practicing to full scope to address the complex needs of breast cancer survivors prescribed AET.

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