The guideline development process can be challenging when diseases are rare. The development of the NHF-McMaster Guideline on Care Models for Hemophilia Management presented an opportunity to identify methodological challenges for guideline development in rare diseases. Several methodological challenges were identified in the evidence gathering and assessment stages. Eight challenges were presented in the development of a systematic review on care models for hemophilia management. The barriers to conducting the systematic review were mostly due to the paucity of high quality evidence in hemophilia care models. Due to the paucity of high-quality evidence typical of a rare condition such as hemophilia, indirect evidence from other chronic conditions were sought through an overview of reviews. Seven challenges were identified in the development of an overview on integrated multidisciplinary care for the management of chronic conditions in adults. The barriers were mainly due to unestablished methodology for conducting overviews, and the challenge of applying this evidence in the context of hemophilia for the guideline. To overcome the methodological challenges with evidence gathering and assessment for rare disease guideline development, the decision-making process to derive solutions were transparently presented. Overall, the methodological challenges as well as apparent facilitators from a rare disease setting are shown to be related to the barriers and facilitators at the research, clinical, and guideline development phase. As a result, using an example from hemophilia, this thesis has demonstrated that it is possible to develop high quality guidelines for rare diseases. / Thesis / Master of Science (MSc)

<p><strong>Introduction</strong></p> <p>Despite increasing global interest in regional palliative care networks (PCN) to integrate care, little explicit direction exists to guide their evaluation. The first step of this research was to develop a comprehensive conceptual framework using a systems approach for evaluating integrated palliative care. This framework was then used to guide a rigorous examination of a selected PCN.</p> <p><strong>Methods</strong></p> <p>The conceptual framework was derived from the empirical literature, incorporating principal features of network integration. A case study methodology was used to assess structure (administration) and process (provider) levels in the framework through document review, a PCN executive interview, and surveys with organizational administrators and health professionals who provide palliative care in the community catchment of the PCN.</p> <p><strong>Results</strong></p> <p>Key features to efficient palliative care delivery are currently lacking across this PCN area. Still, the 20 responding administrators (90% response rate) largely viewed Network accomplishments positively and the resulting partnerships as beneficial and collaborative. Additional efforts were seen as required in ensuring palliative care patient identification, reducing silos between organizations, and greater by-in from regional authorities. Relative to processes, the 86 health care providers (85% response rate) reported valuing collaboration and reflected positively on many of the framework elements measured. Insufficiencies were perceived in support for case conferencing and evaluative activities, as well as in informational access.</p> <p><strong> </strong></p> <p><strong>Conclusion</strong></p> <p>This study enabled us to test both the utility of the framework and the capacity of the selected PCN for providing quality, integrated palliative care. This study represents an important initial attempt at examining network-integrated palliative care.</p> / Doctor of Philosophy (PhD)

Yes / Community-based case managers in health have been compared to glue which holds the dynamic needs of clients to a disjointed range of health and social services. However, case manager roles are difficult to understand due to poorly defined roles, confusing terminology, and low visibility in New Zealand. This review aims to map the landscape of case management work to advance workforce planning by clarifying the jobs, roles, and relationships of case managers in Aotearoa New Zealand (NZ). Methods: Our scoping and mapping review includes peer-reviewed articles, grey literature sources, and interview data from 15 case managers. Data was charted iteratively until convergent patterns emerged and distinctive roles identified. Results: A rich and diverse body of literature describing and evaluating case management work in NZ (n = 148) is uncovered with at least 38 different job titles recorded. 18 distinctive roles are further analyzed with sufficient data to explore the research question. Social ecology maps highlight diverse interprofessional and intersectoral relationships. Conclusions: Significant innovation and adaptations are evident in this field, particularly in the last five years. Case managers also known as health navigators, play a pivotal but often undervalued role in NZ health care, through their interprofessional and intersectoral relationships. Their work is often unrecognised which impedes workforce development and the promotion of person-centered and integrated health care. / This research was funded by the AUT University, Faculty of Health & Environmental Sciences Summer Student Grant 2021/2022 and the School of Public Health and Interdisciplinary Studies PBRF Funding 2021. The APC charge is covered by the School of Public Health and Interdisciplinary Studies PBRF 2022.

O método INTERMED é um instrumento que classifica a complexidade biopsicossocial de pacientes em diversos níveis de assistência, qualifica o cuidado e melhora a comunicação interprofissional. Ele permite avaliar a complexidade do paciente através da investigação de quatro domínios: biológico, psicológico, social e sistema de saúde. Promove o cuidado integrado com foco no paciente e viabiliza práticas de gestão da clínica e de leitos hospitalares. O objetivo principal desta pesquisa foi realizar a tradução, adaptação transcultural e validação do método INTERMED para realidade hospitalar brasileira. Os objetivos secundários foram avaliar a consistência interna do método, estudar a interface dos resultados do INTERMED com dados sociodemográficos e verificar sua contribuição no gerenciamento de leitos hospitalares e gestão da clínica. O instrumento foi aplicado a um total de 300 pacientes, com mais de 5 dias de internação hospitalar, com idade >=a 21 anos e média de idade de 57,8 anos, sendo que 58,3% eram do sexo masculino. Esta amostra foi coletada entre setembro e dezembro de 2011 em três hospitais da cidade de São Paulo, a saber, um privado (A), um de ensino (B) e um público(C). A validação e adaptação transcultural ocorreram em cinco fases: tradução, síntese, retrotradução, avaliação e validação por um comitê de juízes e pré-teste. A validação da tradução pelo comitê de juízes foi realizada pelo Índice de Validade de Conteúdo e a consistência interna do instrumento foi avaliada pelo coeficiente alpha de Crombach. A estrutura do documento foi estudada pelo Coeficiente de Correlação de Spearman e a validade preditiva para tempo de internação, pela relação entre a pontuação total do score do INTERMED e o tempo de hospitalização dos pacientes. A validação da tradução foi de 94,2% de equivalência semântica, 94,3% equivalência idiomática e 86,6% de equivalência cultural entre o instrumento original e o traduzido. No pré-teste, obteve-se acima de 90% de compreensão em todos os itens do INTERMED. Os scores médios obtidos com o INTERMED foram de 15,20e 21 nas instituições A,B e C respectivamente. Isto significa, pela classificação, do instrumento, que nas três instituições os pacientes não eram complexos (<21 pontos). A consistência interna e precisão do instrumento foram consideradas boa para as três instituições. As correlações entre os domínios do instrumento foram positivas e significantes em sua maioria. Em relação à validade preditiva, tempos maiores de internação foram observados em pacientes com escores maiores. Os dados encontrados sugerem que para além da gravidade biológica, o tempo de internação pode estar relacionado aos aspectos psicológicos, sociais ou do sistema de saúde, como a espera para realização de procedimentos. A versão brasileira do INTERMED possui equivalência com o instrumento original; é confiável, uma vez que os itens do instrumento relacionam-se e são complementares entre si; é válida, pois é capaz de medir o objeto ao qual se propõe. Assim, recomenda-se sua incorporação como uma ferramenta de apoio a gestão de leitos e ao cuidado integral do paciente. / The INTERMED method is an instrument that classifies the biopsychosocial complexity of patients under various levels of healthcare. It also qualifies care and improves interprofessional communication. It also allows us to evaluate patient\'s complexity by means of the investigation of four domains: biological, psychological, social and healthcare. Apart from that, it promotes integrated care by focusing on the patient and by enabling clinical management practices and the availability of hospital beds. The main objective of this research was to translate, transculturally adapt and validate the INTERMED method to the Brazilian health system reality. As a secondary objective, INTERMED aimed at evaluating the internal consistency of the method by studying the interface of the INTERMED results along with sociodemographic data and by verifying its contribution to the availability of hospital beds and clinical management. That instrument was applied to a total of 300 inpatients who had been at hospital for more than 5 days. All of them were 21 years old or more and the average age was 57,8 years old, being 58,3% male patients. That sample was collected between September and December 2011 at three hospitals in São Paulo, being one private (A), one university hospital (B) and one public hospital (C). The validation and transcultural adaptation occurred on five stages: translation, synthesis, back-translation, evaluation and validation by a committee of judges and pre-test. The validation of the translation by the committee of judges was carried out by using the Content Validity Index and the internal consistency of the instrument was evaluated by the alpha Crombach coefficient. The structure of the document was studied by using the Spearman correlation coefficient and the predictive validity for length of stay was evaluated by the ratio between the INTERMED total score and the patients\' length of stay. The validation of the translation reached 94,2% of semantic equivalence, 94,3% of language equivalence and 86,6% of cultural equivalence when the original and the translated document were compared. During pre-test phase, more than 50% of comprehension was achieved in all INTERMED items. The average scores achieved by INTERMED were 15, 20 and 21 at institutions A, B and C, respectively. It means that according to the classification of the instrument at the three institutions patients were not considered complex (< 21 points). The internal consistency and the accuracy of the instrument were regarded as good for the three institutions. In general, the correlation among the domains of the instrument were positive and significant. As regards the predictive validity, longer lengths of stay were observed in patients with higher scores. The data found suggest that besides the biological seriousness, the length of stay may be related to psychological or social aspects or even to the health system in which the time patients wait for procedures may be long. The Brazilian version of INTERMED is equivalent to the original; it is reliable, since its items relate to each other and are complementary among themselves; it is valid, on the grounds that it is able to measure the object it is intended to. Having said that, its use is recommendable as a tool to support the patient\'s integrated care management as well as the availability of hospital beds.

Health psychologists with training in integrated care are ideal candidates to work in Federally Qualified Health Centers (FQHCs). However, despite the large documented need for more behavioral health providers in FQHCs, psychologists are underrepresented in this setting compared to other behavioral health professions. The purpose of this study was to: 1) examine the specific beliefs that are most relevant to executives’ intentions to hire psychologists, 2) determine how executives’ perceived control over hiring psychologists varies by several demographic variables, and 3) examine how well the Theory of Planned Behavior (TPB) predicts executives’ intentions to hire psychologists. Method: Executives (N = 222) from every US Census defined division of the country completed an online TBP survey assessing demographics and beliefs about hiring psychologists. Path analysis was used to examine the relationships between TPB variables. Results: Executives ranked psychologists as highly proficient in integrated care and general clinical skills but less proficient in research and leadership skills. Compared to other skills, executives ranked research skills as lower in importance for clinical staff to possess. Longer executive job tenures (but not FQHC budget or rural status) predicted more perceived control over hiring practices. The standard TPB was a poor fit with the data, but a modified version explained 78% of the variance in executives’ intent to hire psychologists. In this model, executives’ normative beliefs were most predictive of their intent to hire. Implications: Results point to the importance of internal champions within FQHCs who advocate for psychologists as well as the need for early interprofessional education. Opportunities exist for health service psychologists to promote the value of research to executives and to differentiate themselves by emphasizing their skills in research and implementation science.

The aim of the study was to determine the practice of nurses employed in integrated care projects in New Zealand from late 1999 to early 2001. Integrated care was a major health reform strategy that emphasised primary health care as a means to improve service provision between the health sectors. An investigation of nurses’ practice sought to determine the extent to which primary health care principles had been adopted in practice, as a comprehensive primary health care approach has been advocated globally in the management of chronic conditions; the leading cause of disability throughout the world and the most expensive problems faced by health care systems. The philosophical basis of the research was postpositivism. The study employed a quantitative non-experimental survey design because it allowed numeric descriptions of the characteristics of integrated care projects to be gained for the purpose of identifying nurses’ practice. The unit of inquiry was the integrated care project, and 80 comprised the study population. Data were obtained on projects from expert informants (n=27) by telephone survey using a structured interview questionnaire developed by the researcher. Data obtained from interviews were statistically analysed in two stages. First, data were produced to comprehensively describe the characteristics of integrated care projects and nurses practice. The ‘Public health interventions model’ was used as a framework to analyses the interventions (activities) and levels of population-based practice of nurses. Following this, the social values embedded in nurses’ practice were determined using ‘Beattie’s model of health promotion’ as a framework for analysis. A strong association was found between nurses’ practice in projects and strategies used in integrated care, such as information sharing, guideline development and promotion, and case management, and projects with an ethnic focus, low income focus, chronic condition focus, and well-health focus. Whilst nurses undertook interventions most frequently at the individual practice level they were also strongly ii associated with the small proportion of interventions that were undertaken at the community level. The majority of interventions by nurses reflected the health promotion value of health persuasion, indicating a paternalist and individual-oriented philosophy. Nurses were engaged in two interventions that indicated a collectiveoriented philosophy - coalition building and community development, the latter reflecting health promotion values of negotiation, partnership and empowerment. The study demonstrated that nurses’ practice in projects was predominantly centred on individual-focused population-based practice suggesting the need for a framework to assist nurses to transition their practice to include more activity at the community and systems levels. Without a reorientation of practice, nurses will remain limited in their ability to achieve health gains for populations. In response to this conclusion, and drawing on research results and reviewed literature, a new model, The ‘Primary Health Care interventions model’ was constructed. Recommendations include advocacy for the acceptance of the model by the health funder, professional nursing bodies, health organisations, educational institutions, nurses, communities, and individuals.

The aim of the study was to determine the practice of nurses employed in integrated care projects in New Zealand from late 1999 to early 2001. Integrated care was a major health reform strategy that emphasised primary health care as a means to improve service provision between the health sectors. An investigation of nurses’ practice sought to determine the extent to which primary health care principles had been adopted in practice, as a comprehensive primary health care approach has been advocated globally in the management of chronic conditions; the leading cause of disability throughout the world and the most expensive problems faced by health care systems. The philosophical basis of the research was postpositivism. The study employed a quantitative non-experimental survey design because it allowed numeric descriptions of the characteristics of integrated care projects to be gained for the purpose of identifying nurses’ practice. The unit of inquiry was the integrated care project, and 80 comprised the study population. Data were obtained on projects from expert informants (n=27) by telephone survey using a structured interview questionnaire developed by the researcher. Data obtained from interviews were statistically analysed in two stages. First, data were produced to comprehensively describe the characteristics of integrated care projects and nurses practice. The ‘Public health interventions model’ was used as a framework to analyses the interventions (activities) and levels of population-based practice of nurses. Following this, the social values embedded in nurses’ practice were determined using ‘Beattie’s model of health promotion’ as a framework for analysis. A strong association was found between nurses’ practice in projects and strategies used in integrated care, such as information sharing, guideline development and promotion, and case management, and projects with an ethnic focus, low income focus, chronic condition focus, and well-health focus. Whilst nurses undertook interventions most frequently at the individual practice level they were also strongly ii associated with the small proportion of interventions that were undertaken at the community level. The majority of interventions by nurses reflected the health promotion value of health persuasion, indicating a paternalist and individual-oriented philosophy. Nurses were engaged in two interventions that indicated a collectiveoriented philosophy - coalition building and community development, the latter reflecting health promotion values of negotiation, partnership and empowerment. The study demonstrated that nurses’ practice in projects was predominantly centred on individual-focused population-based practice suggesting the need for a framework to assist nurses to transition their practice to include more activity at the community and systems levels. Without a reorientation of practice, nurses will remain limited in their ability to achieve health gains for populations. In response to this conclusion, and drawing on research results and reviewed literature, a new model, The ‘Primary Health Care interventions model’ was constructed. Recommendations include advocacy for the acceptance of the model by the health funder, professional nursing bodies, health organisations, educational institutions, nurses, communities, and individuals.

The aim of the study was to determine the practice of nurses employed in integrated care projects in New Zealand from late 1999 to early 2001. Integrated care was a major health reform strategy that emphasised primary health care as a means to improve service provision between the health sectors. An investigation of nurses’ practice sought to determine the extent to which primary health care principles had been adopted in practice, as a comprehensive primary health care approach has been advocated globally in the management of chronic conditions; the leading cause of disability throughout the world and the most expensive problems faced by health care systems. The philosophical basis of the research was postpositivism. The study employed a quantitative non-experimental survey design because it allowed numeric descriptions of the characteristics of integrated care projects to be gained for the purpose of identifying nurses’ practice. The unit of inquiry was the integrated care project, and 80 comprised the study population. Data were obtained on projects from expert informants (n=27) by telephone survey using a structured interview questionnaire developed by the researcher. Data obtained from interviews were statistically analysed in two stages. First, data were produced to comprehensively describe the characteristics of integrated care projects and nurses practice. The ‘Public health interventions model’ was used as a framework to analyses the interventions (activities) and levels of population-based practice of nurses. Following this, the social values embedded in nurses’ practice were determined using ‘Beattie’s model of health promotion’ as a framework for analysis. A strong association was found between nurses’ practice in projects and strategies used in integrated care, such as information sharing, guideline development and promotion, and case management, and projects with an ethnic focus, low income focus, chronic condition focus, and well-health focus. Whilst nurses undertook interventions most frequently at the individual practice level they were also strongly ii associated with the small proportion of interventions that were undertaken at the community level. The majority of interventions by nurses reflected the health promotion value of health persuasion, indicating a paternalist and individual-oriented philosophy. Nurses were engaged in two interventions that indicated a collectiveoriented philosophy - coalition building and community development, the latter reflecting health promotion values of negotiation, partnership and empowerment. The study demonstrated that nurses’ practice in projects was predominantly centred on individual-focused population-based practice suggesting the need for a framework to assist nurses to transition their practice to include more activity at the community and systems levels. Without a reorientation of practice, nurses will remain limited in their ability to achieve health gains for populations. In response to this conclusion, and drawing on research results and reviewed literature, a new model, The ‘Primary Health Care interventions model’ was constructed. Recommendations include advocacy for the acceptance of the model by the health funder, professional nursing bodies, health organisations, educational institutions, nurses, communities, and individuals.

The aim of the study was to determine the practice of nurses employed in integrated care projects in New Zealand from late 1999 to early 2001. Integrated care was a major health reform strategy that emphasised primary health care as a means to improve service provision between the health sectors. An investigation of nurses’ practice sought to determine the extent to which primary health care principles had been adopted in practice, as a comprehensive primary health care approach has been advocated globally in the management of chronic conditions; the leading cause of disability throughout the world and the most expensive problems faced by health care systems. The philosophical basis of the research was postpositivism. The study employed a quantitative non-experimental survey design because it allowed numeric descriptions of the characteristics of integrated care projects to be gained for the purpose of identifying nurses’ practice. The unit of inquiry was the integrated care project, and 80 comprised the study population. Data were obtained on projects from expert informants (n=27) by telephone survey using a structured interview questionnaire developed by the researcher. Data obtained from interviews were statistically analysed in two stages. First, data were produced to comprehensively describe the characteristics of integrated care projects and nurses practice. The ‘Public health interventions model’ was used as a framework to analyses the interventions (activities) and levels of population-based practice of nurses. Following this, the social values embedded in nurses’ practice were determined using ‘Beattie’s model of health promotion’ as a framework for analysis. A strong association was found between nurses’ practice in projects and strategies used in integrated care, such as information sharing, guideline development and promotion, and case management, and projects with an ethnic focus, low income focus, chronic condition focus, and well-health focus. Whilst nurses undertook interventions most frequently at the individual practice level they were also strongly ii associated with the small proportion of interventions that were undertaken at the community level. The majority of interventions by nurses reflected the health promotion value of health persuasion, indicating a paternalist and individual-oriented philosophy. Nurses were engaged in two interventions that indicated a collectiveoriented philosophy - coalition building and community development, the latter reflecting health promotion values of negotiation, partnership and empowerment. The study demonstrated that nurses’ practice in projects was predominantly centred on individual-focused population-based practice suggesting the need for a framework to assist nurses to transition their practice to include more activity at the community and systems levels. Without a reorientation of practice, nurses will remain limited in their ability to achieve health gains for populations. In response to this conclusion, and drawing on research results and reviewed literature, a new model, The ‘Primary Health Care interventions model’ was constructed. Recommendations include advocacy for the acceptance of the model by the health funder, professional nursing bodies, health organisations, educational institutions, nurses, communities, and individuals.

Obiettivo: Accrescere la conoscenza relativa a come supportare il coinvolgimento attivo dei pazienti anziani, descrivendo i contenuti di interventi per il coinvolgimento attivo con pazienti anziani attualmente presenti sul panorama scientifico, sviluppando un nuovo intervento e studiando le prime fasi della sua implementazione. Metodo: Nel primo studio, in risposta al primo obiettivo, è stata condotta una analisi sistematica della letteratura scientifica sul tema. Il secondo studio ha visto la conduzione di focus groups con professionisti sanitari e interviste individuali a pazienti anziani per raffinare e validare qualitativamente un nuovo intervento per il coinvolgimento attivo. Nel terzo studio, si è studiata l’implementazione iniziale dell’intervento in un contesto italiano di cure integrate attraverso una ricerca partecipativa. Risultati: Il principale risultato del primo studio è stato la sbilanciata attenzione tra i 35 interventi per il coinvolgimento attivo presenti in letteratura per le componenti emotive a favore di quelle educative e comportamentali. È sulla base dei risultati del primo studio e di un modello teorico che è stata sviluppata una prima bozza di intervento. Nel secondo studio, la prospettiva di professionisti sanitari e pazienti anziani ha fornito indicazioni per modificare l’intervento e renderlo potenzialmente implementabile nella pratica clinica. L’intervento che è risultato consiste di almeno due incontri mensili individuali, più un set personalizzato di esercizi riflessivi per il paziente da compilare in autonomia a casa. Infine, il terzo studio ha osservato come le diverse pratiche educative presenti nei diversi setting – ospedaliero, ambulatoriale, territoriale - di un contesto di cura integrato hanno generato diverse, specifiche, difficoltà per l’implementazione. Un certo sforzo di flessibilità e personalizzazione dei contenuti e delle procedure dell’intervento è stato dunque richiesto. Implicazioni: L’intervento sviluppato mostra potenzialità nel supportare il coinvolgimento attivo dei pazienti anziani, ma necessita di ulteriori studi relativi all’implementabilità sul lungo termine e alla sua efficacia. / Aim: To contribute knowledge about how patient engagement support can be provided to older adults, by describing the contents of interventions aimed at patient engagement for older adults, developing a patient engagement intervention, and studying its early-stage implementation. Methods: In study 1, a systematic review of the literature was performed. In study 2, a qualitative study with focus groups involving healthcare professionals and individual interviews to older adults was conducted to develop the intervention. In study 3, a qualitative study of a participatory process was accomplished to explore the early-stage implementation of the intervention in one integrated-care organization. Results: The main finding of study 1 was that the emotional dimension was less used than the educational and behavioural dimensions among the 35 patient engagement interventions for older adults. The findings from the study 1 were used, together with a theory of patient engagement, to develop a draft of an individual patient engagement intervention for older adults (PHEinAction). In the study 2, the views of healthcare professionals and older adults were used to refine and finally endorse it. The final version of PHEinAction consisted of at least two face-to-face one hour individual sessions one month apart, plus a set of personalized home-based exercises aimed to facilitate a range of emotional, behavioural, cognitive changes for patient engagement. Finally, the study 3 observed how the existing patient education practice of inpatient, outpatient and territorial settings differently challenged the implementation. A certain degree of flexibility of PHEinAction’s contents and procedures was required to address these challenges. Implications: PHEinAction shows promise as an intervention to improve patient engagement in older adults. However, more research is needed, especially focusing on long-term implementation studies and evaluation of effects with experimental studies.