Open-Source Computerized Patient-Reported Outcomes: Case Studies Illustrating Fifteen Years of Evolution

Thesis (Master's)--University of Washington, 2016-06

The role of shared decision-making in audiologic rehabilitation

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.

Patterns of acculturative stress: Continuity, discontinuity, and adjustment among Latino youth

This study evaluated inter- and intra-individual changes in acculturation, acculturative stress, and adaptation experiences, as well as their associations with adjustment outcomes among a group of Latino adolescents in South Florida. Specifically, the current study investigated the incidence, changes, and effects of stressors that arise from acculturation experiences (e.g., related to culture, discrimination, language difficulties) among Latino youth by employing a person-centered approach and a longitudinal research design. Four separate groups of analyses were conducted to investigate (a) within-group differences in levels of reported acculturative stress, (b) patterns of continuity and discontinuity in levels of acculturative stress across time, (c) adjustment outcomes associated with distinct patterns of acculturative stress within each measurement occasion, and (d) predictive relations between longitudinal acculturative stress trajectories in early adolescence and psychosocial adjustment outcomes in young adulthood. ^ Results from the multivariate analyses indicated great within group heterogeneity in acculturative stress among Latino youth during early adolescence, as well as significant continuity and discontinuity in the patterns of shifts among acculturative stress profiles between contiguous measurement occasions. Within each developmental period, membership in acculturative stress clusters was significantly and differentially associated with multiple adjustment outcomes, suggesting that maladaptive outcomes are more likely to occur among Latino adolescents experiencing high levels of psychological distress across multiple acculturative domains. In general, Latino youth acculturation is best understood as multi-dimensional, to be variable across time, and to be fluid and responsive to multiple factors and influences. Implications for preventive strategies are discussed with regard to acculturation and developmental psychology research literatures. ^

On the developmental continuity /discontinuity of early adolescent patterns of racial identity salience: Relations with later identities and psychosocial adjustment

Given the significant amount of attention placed upon race within our society, racial identity long has been nominated as a meaningful influence upon human development (Cross, 1971; Sellers et al., 1998). Scholars investigating aspects of racial identity have largely pursued one of two lines of research: (a) describing factors and processes that contribute to the development of racial identities, or (b) empirically documenting associations between particular racial identities and key adjustment outcomes. However, few studies have integrated these two approaches to simultaneously evaluate developmental and related adjustment aspects of racial identity among minority youth. Consequently, relations between early racial identity developmental processes and correlated adjustment outcomes remain ambiguous. Even less is known regarding the direction and function of these relationships during adolescence. To address this gap, the present study examined key multivariate associations between (a) distinct profiles of racial identity salience and (b) adjustment outcomes within a community sample of African-American youth. Specifically, a person-centered analytic approach (i.e., cluster analysis) was employed to conduct a secondary analysis of two archived databases containing longitudinal data measuring levels of racial identity salience and indices of psychosocial adjustment among youth at four different measurement occasions.^ Four separate groups of analyses were conducted to investigate (a) the existence of within-group differences in levels of racial identity salience, (b) shifts among distinct racial identity types between contiguous times of measurement, (c) adjustment correlates of racial identity types at each time of measurement, and (d) predictive relations between racial identity clusters and adjustment outcomes, respectively. Results indicated significant heterogeneity in patterns of racial identity salience among these African-American youth as well as significant discontinuity in the patterns of shifts among identity profiles between contiguous measurement occasions. In addition, within developmental stages, levels of racial identity salience were associated with several adjustment outcomes, suggesting the protective value of high levels of endorsement or internalization of racial identity among the sampled youth. Collectively, these results illustrated the significance of racial identity salience as a meaningful developmental construct in the lives of African-American adolescents, the implications of which are discussed for racial identity and practice-related research literatures. ^

Exploring individuals' experiences of time-sensitive practice in rural Newfoundland and Labrador: a qualitative study

Rural residents of NL face some of the most complex and challenging mental health issues including depression, schizophrenia, and risk of suicide with inadequate and hard to access treatment services. Due to the increasing demands for mental health services, government officials have been emphasizing the need for more responsive and person-centered services to meet client needs. Time-sensitive counselling, an alternative approach to long-term counselling, provides more timely and focused interventions. Mental Health services in Bonavista, a rural community in NL, recently began offering time-sensitive counselling services to its residents, entitled the “Change Clinic.” This phenomenological qualitative research study explored individuals’ experiences of time-sensitive counselling services as offered by mental health services in Bonavista. The results of this research study are detailed and suggest that time-sensitive counselling services can assist in meeting the service needs of rural residents of NL.

'Lines of flight': digital musical instruments, inclusive music bands, meaningful engagement in music-making and learning

In this study I examine the development of three inclusive music bands in Cork city. Derived from Jellison’s research on inclusive music education, inclusive music bands involve students with disabilities coming together with typically developing peers to make and learn music that is meaningful (Jellison, 2012). As part of this study, I established three inclusive music bands to address the lack of inclusive music making and learning experiences in Cork city. Each of these bands evolved and adapted in order to be socio-culturally relevant within formal and informal settings: Circles (community education band), Till 4 (secondary school band) and Mish Mash (third level and community band). I integrated Digital Musical Instruments into the three bands, in order to ensure access to music making and learning for band members with profound physical disabilities. Digital Musical Instruments are electronic music devices that facilitate active music making with minimal movement. This is the first study in Ireland to examine the experiences of inclusive music making and learning using Digital Musical Instruments. I propose that the integration of Digital Musical Instruments into inclusive music bands has the potential to further the equality and social justice agenda in music education in Ireland. In this study, I employed qualitative research methodology, incorporating participatory action research methodology and case study design. In this thesis I reveal the experiences of being involved in an inclusive music band in Cork city. I particularly focus on examining whether the use of this technology enhances meaningful music making and learning experiences for members with disabilities within inclusive environments. To both inform and understand the person centered and adaptable nature of these inclusive bands, I draw theoretical insights from Sen’s Capabilities Approach and Deleuze and Guatarri’s Rhizome Theory. Supported by descriptive narrative from research participants and an indepth examination of literature, I discover the optimum conditions and associated challenges of inclusive music practice in Cork city.

Chemotherapy patient perception regarding communication with the healthcare staff

Purpose: To qualitatively explore the communication between healthcare professionals and oncology patients based on the perception of patients undergoing chemotherapy.Method: Qualitative and exploratory design. Participants were 14 adult patients undergoing chemotherapy at different stages of the disease. A socio-demographic and clinical data form was utilized along with semi-structured interviews. The interviews were audio-recorded, transcribed and content analysis was performed. Two independent judges evaluated the interview content in regards to emerging categories and obtained a Kappa index of 0.834.Results: Three categories emerged from the data: 1) Technical communication without emotional support, in which the information provided is composed of strictly technical information regarding the diagnosis, treatment and/or prognosis; 2) Technical communication, in which the information provided is oriented towards the technical aspects of the patient’s physical condition, while also providing psychological support for the patients’ subjective needs; and 3) Insufficient technical communication, win which there are gaps in the information provided causing confusion and suffering to the patient.Conclusions: Communication with emotional support contributes to greater satisfaction of chemotherapy patients. Practical implications: the results provide elements for the training of healthcare professionals regarding the importance of the emotional support that can be offered to cancer patients during their treatment.

Sjuksköterskans upplevelse av att ge personcentrerad vård till personer med demenssjukdom : En litteraturstudie

Background: Dementia impairs cognitive functions, such as memory and speech, changing a person’s life forever. Providing person-centred care to these persons intend to retain their identities, dignity and autonomy. Such care demands time, devotion and good knowledge of the caring nurse. Dementia is expected to increase in the future and therefore nurses will have to face new challenges. Aim: To describe nurses’ experience of providing person-centred care for people with dementia. Method: A literature review of 15 articles, published between 2009-2016, that have been read and analysed through content-analysis. Results: Nurses experience a positive change in their attitudes, when providing person-centred care to people with dementia, as they gained better understanding of their patients’ dignity and integrity. Education, training and support from management were seen as key factors for providing up-to-date care. Time was viewed as a hindrance for person-centred care, and often led to nurses prioritizing other routines. Two common outcomes of person-centred care were increased satisfaction as well as emotional burnout. Conclusion: Since dementia is increasing and nurses find person-centred care time-consuming, there is a risk of such care becoming poor. To prevent this nurses need good leadership and education.

Barns intryck av omgivningen på en ortopedteknisk avdelning : - En kvalitativ studie om hur barn uppfattar miljön och mötet på en ortopedteknisk avdelning

Bakgrund: För att uppnå en god barnanpassad vård inom ortopedteknik krävs information om hur barn uppfattar mötet på en ortopedteknisk avdelning. Genom att ta del av barns tankar, åsikter och förslag kan verksamheter i framtiden lättare argumentera för exempelvis hur lokaler bör inredas och hur man bör bemöta barn.   Syfte: Syftet med denna studie är att undersöka hur barn upplever mötet på en ortopedteknisk avdelning i avseendet vårdmiljö och möte med ortopedingenjören.   Metod: En kvalitativ metod där deltagarna får rita och berätta kallad “Draw and tell” och åtta intervjuer med barn mellan 6 till 12 år om deras upplevelse efter besöket hos en ortopedingenjör genomfördes. Intervjuerna transkripterades och en innehållsanalys genomfördes.   Resultat: Vissa gemensamma faktorer hittades i intervjuerna så som att det ansågs att det samtalades för mycket utan att engagera barnet samt att aktiviteter som fanns sågs som bra då det kunde bli lite väntan under besöket. Det fanns flera förslag på andra aktiviteter som önskades under väntan och speglade barnens egna intressen så som datorspel och böcker.   Slutsats: Denna studie visar att det som ortopedingenjören är viktigt att engagera barnen vid mötena samt att aktiviteter finns till hands under långa väntetider.   Nyckelord: Barns upplevelser, ortopedteknik, ortopedingenjör, bemötande, miljö

An integrated measure of student perceptions of feedback, engagement and school identification

Teacher feedback influences student learning, identity construction and trajectories. This study tests the measurement properties of a questionnaire designed to assess (a) student perceptions about teacher feedback; (b) student identification with school, and; (c) student engagement. 1089 students in grades 6 through 10 (mean age 13.4) participated in the study. Factor analyses yield dimensions of School Identification, Effective Feedback, Person-Centered Feedback, Engagement, and Social Acceptance. Internal consistency for principal dimensions varied between .77 and .89. The instrument is suitable for assessing student school identification, behavioral engagement, and perceptions of teacher feedback.

Parente sensitive support by paediatric nurses

Introdução The hospitalization of a child is an experience that causes big changes in child and his family life. The parents often suffer from stress and anxiety. This can affect their relationship with the child. Because of the closeness to the parents, nurses have an important role in giving parents support so they can reduce their stress and have more energy to support and take care of their children and in the inclusion of the family in the process of care Objectivos The aim of this study was to define what family-centered care is, to define the needs of hospitalized children's parents and to identify the strategies and methods that the nurses use to give parental support adapted to the parent's needs. It was also a goal to identify and understand the main differences between parental support given by nurses in Belgium and Portugal. Metodologia The study exists out of two parts. First is an integrative review of literature. The search was performed using the databases MEDLINE, CINAHL , PubMed and Science Direct. 18 Articles were selected based on inclusion and exclusion criteria. They had to involve nurses, hospitalized children between 0 and 18 years and their parents. Second part was a focus group. The participants were pediatric nurses from Portugal and Belgium. The goal was to understand different perspectives related to the parental needs of hospitalized children and nursing interventions to answer that needs. Resultados family-centered care can be considered as a partnership between family and nurses. It has some general principles: information sharing, respect differences, negotiation and care in the context of the family. Parent's participation is important to reduce the parental stress and it is essential for meeting the needs of the children. Parents have different needs: knowledge and communication, support, comfort, proximity and assurance. Parents cope with stress in different ways and nurses can support them while they are in the hospital. It is a nurse task to identify the stressors and know methods of emotional support, so she can protect the family structure. Nurses should always see the family as a path to the child, with whom the nurses should worry about taking care and meeting their needs. This is crucial to ensure the family's well-being, adaption to hospitalization and the child's recovery. Conclusões Nurses should collect information about the family which includes family relationships, cultural and religious habits and familiar dynamic. Parents need interpersonal emotional support. It is important for parents to be close to their children but they also need to take care of themselves. When nurses have enough information they can use it to the identification of parental needs and the planning of nursing interventions. It is important that nurses create an environment where parents feel safe and that they have privacy. To create a therapeutic and professional relationship efficient communication is needed. Parents will experience less stress and anxiety.

Parente sensitive support by paediatric nurses

Introdução The hospitalization of a child is an experience that causes big changes in child and his family life. The parents often suffer from stress and anxiety. This can affect their relationship with the child. Because of the closeness to the parents, nurses have an important role in giving parents support so they can reduce their stress and have more energy to support and take care of their children and in the inclusion of the family in the process of care Objectivos The aim of this study was to define what family-centered care is, to define the needs of hospitalized children's parents and to identify the strategies and methods that the nurses use to give parental support adapted to the parent's needs. It was also a goal to identify and understand the main differences between parental support given by nurses in Belgium and Portugal. Metodologia The study exists out of two parts. First is an integrative review of literature. The search was performed using the databases MEDLINE, CINAHL , PubMed and Science Direct. 18 Articles were selected based on inclusion and exclusion criteria. They had to involve nurses, hospitalized children between 0 and 18 years and their parents. Second part was a focus group. The participants were pediatric nurses from Portugal and Belgium. The goal was to understand different perspectives related to the parental needs of hospitalized children and nursing interventions to answer that needs. Resultados family-centered care can be considered as a partnership between family and nurses. It has some general principles: information sharing, respect differences, negotiation and care in the context of the family. Parent's participation is important to reduce the parental stress and it is essential for meeting the needs of the children. Parents have different needs: knowledge and communication, support, comfort, proximity and assurance. Parents cope with stress in different ways and nurses can support them while they are in the hospital. It is a nurse task to identify the stressors and know methods of emotional support, so she can protect the family structure. Nurses should always see the family as a path to the child, with whom the nurses should worry about taking care and meeting their needs. This is crucial to ensure the family's well-being, adaption to hospitalization and the child's recovery. Conclusões Nurses should collect information about the family which includes family relationships, cultural and religious habits and familiar dynamic. Parents need interpersonal emotional support. It is important for parents to be close to their children but they also need to take care of themselves. When nurses have enough information they can use it to the identification of parental needs and the planning of nursing interventions. It is important that nurses create an environment where parents feel safe and that they have privacy. To create a therapeutic and professional relationship efficient communication is needed. Parents will experience less stress and anxiety.

Barriers to and facilitators of older adult’s adherence to health recommendations: Towards an EngAging two-way health communication

Non-adherence to health recommendations (e.g. medical prescriptions) presents potential costs for healthcare, which could be prevented or mitigated. This is often attributed to a person’s rational choice, to not adhere. However, this may also be determined by individual and contextual factors implied in the recommendations communication process. In accordance, this chapter focuses specifically on barriers to and facilitators of adherence to recommendations and engagement with the healthcare process, particularly concerning the communication between health professionals and patients. For this, the authors present examples of engagement increment through different degrees of participation, from a one-way/directive towards a two-way/engaging communication process. This focuses specifically on a vulnerable population group with increasing healthcare needs: older adults. Future possibilities for two-way engaging communications are discussed, aimed at promoting increased adherence to health recommendations and people’s self-regulation of their own health.

Rastreio de Infeções Sexualmente Transmissíveis não víricas nos adolescentes: qual o estado da arte

As infeções sexualmente transmissíveis (IST) constituem um problema persistente de saúde pública, sendo os adolescentes e adultos jovens os que apresentam as taxas de prevalência mais elevadas para algumas IST. As IST não víricas nos países desenvolvidos incluem a Chlamydia Trachomatis, a Neisseria gonorrhoeae, o Treponema pallidume a Trichomonas vaginalis. A deteção precoce das IST não víricas tem impacto positivo a nível individual e na saúde pública: permite instituição atem- pada de tratamento adequado, a redução de transmissão entre parceiros, bem como reduzir as complicações a longo prazo, nomeadamente doença inflamatória pélvica, dor pélvica crónica, gravidez ectópica e infertilidade. Várias sociedades médicas internacionais publicaram recomendações para o rastreio de algumas IST não víricas em de- terminados grupos. Em Portugal, a Direção Geral de Saúde (DGS) atualizou em 2014 a norma sobre a notificação obrigatória de doenças transmissíveis, que inclui a gonorreia, a sífilis e a infeção por Chlamydia Trachomatis. Não obstante, os estudos sobre a epidemiologia de IST são parcos em Portugal e apenas recentemente foi contemplado o rastreio oportunístico de infeção genital por Chlamydia Trachomatis no Plano Nacional de Saúde 2011-2016. O médico de família através da sua abordagem holística centrada na pessoa, no seu contexto familiar e social (focando antecedentes pessoais / comportamentos de risco) tem necessariamente um papel determinante na prevenção primária e no rastreio das IST.

Social engagement and adaptive functioning during early childhood: Identifying and distinguishing among subgroups differing with regard to social engagement

This study tested the hypothesis that social engagement (SE) with peers is a fundamental aspect of social competence during early childhood. Relations between SE and a set of previously validated social competence indicators, as well as additional variables derived from observation and sociometric interviews were assessed using both variable-centered and person-centered approaches (N = 1453, 696 girls) in 4 samples (3 U.S.A., 1 Portuguese). Directly observed SE was positively associated with broad-band measures of socially competent behavior, peer acceptance, being a target of peers' attention, and also with broad-band personality dimensions. Using individual Q-items significantly associated with SE in 3 of our 4 samples, a hierarchical cluster analysis yielded a 5-cluster solution that grouped cases efficiently. Tests on relations between cluster membership and the set of social competence and other variables revealed significant main effects of cluster membership in the full sample and within each individual sample, separately. With the exception of tests for peer negative preference, children in the lowest SE cluster also had significantly lower overall social competence, personality functioning scores than did children in higher SE clusters.