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1.  Secondary health conditions and spinal cord injury: an uphill battle in the journey of care 
Disability and Rehabilitation  2013;35(11-13):894-906.
Purpose
To understand the journey of care in the prevention and management of secondary health conditions (SHCs) following spinal cord injury (SCI).
Method
This was a case study design with ‘Ontario’ as the case. The Network Episode Model was used as the conceptual framework. Data sources included in depth interviews with persons with SCI, care providers, and policy and decision makers. Document analysis was also conducted on relevant materials and policies. Key informants were selected by purposeful sampling as well as snowball sampling to provide maximum variation. Data analysis was an iterative process and involved descriptive and interpretive analyses. A coding structure was developed based on the conceptual framework which allowed for free nodes when emerging ideas or themes were identified.
Results
Twenty-eight individuals were interviewed (14 persons with SCI and 14 persons representing care providers, community advocacy organization representatives, system service delivery administrators and policy-makers). A major over-arching domain that emerged from the data was the concept of ‘fighting’. Eleven themes were identified: at the micro-individual level: (i) social isolation and system abandonment, (ii) funding and equitable care, (iii) bounded freedom and self-management; at the meso care provider level: (iv) gender and caregiving strain, (v) help versus disempowerment, (vi) holistic care-thinking outside the box, (vii) poor communication and coordination of care; and at the macro health system level: (viii) fight for access and availability, (ix) models of care tensions, (x) private versus public tensions and (xi) rigid rules and policies.
Conclusions
Findings suggest that the journey is challenging and a persistent uphill struggle for persons with SCI, care providers, and community-based advocates. If we are to make significant gains in minimizing the incidence and severity of SHCs, we need to tailor efforts at the health system level.
Implications for Rehabilitation
Secondary health conditions are problematic for individuals with a spinal cord injury (SCI).
This study aimed to understand the journey of care in the prevention and management of secondary health conditions (SHCs) following SCI.
Findings suggest that the journey is challenging and a persistent uphill struggle for persons with SCI, care providers, and community-based advocates.
All stakeholders involved recognized the disparities in access to care and resources that exist within the system. We recommend that if we are to make significant gains in minimizing the incidence and severity of SHCs, we need to tailor efforts at the health system level.
doi:10.3109/09638288.2012.721048
PMCID: PMC3665227  PMID: 23020250
Health services; secondary health conditions; spinal cord injury
2.  Social networks and secondary health conditions: The critical secondary team for individuals with spinal cord injury 
Objectives
To describe the structure of informal networks for individuals with spinal cord injury (SCI) living in the community, to understand the quality of relationship of informal networks, and to understand the role of informal networks in the prevention and management of secondary health conditions (SHCs).
Design
Mixed-method descriptive study.
Setting
Ontario, Canada
Participants
Community-dwelling adults with an SCI living in Ontario
Interventions/methods
The Arizona Social Support Interview Survey was used to measure social networks. Participants were asked the following open-ended questions: (1) What have been your experiences with your health care in the community? (2) What have been your experiences with care related to prevention and/or management of SHCs?, (3)What has been the role of your informal social networks (friends/family) related to SHCs?
Results
Fourteen key informant interviews were conducted (6 men, 8 women). The overall median for available informal networks was 11.0 persons (range 3–19). The informal network engaged in the following roles: (1) advice/validating concerns; (2) knowledge brokers; (3) advocacy; (4) preventing SHCs; (5) assisting with finances; and (6) managing SHCs. Participants described their informal networks as a “secondary team”; a critical and essential force in dealing with SHCs.
Conclusions
While networks are smaller for persons with SCI compared with the general population, these ties seems to be strong, which is essential when the roles involve a level of trust, certainty, tacit knowledge, and flexibility. These informal networks serve as essential key players in filling the gaps that exist within the formal health care system.
doi:10.1179/2045772312Y.0000000035
PMCID: PMC3459562  PMID: 23031170
Social support; Health care; Community networks; Spinal cord injuries; Secondary complications
3.  How can we improve guideline use? A conceptual framework of implementability 
Background
Guidelines continue to be underutilized, and a variety of strategies to improve their use have been suboptimal. Modifying guideline features represents an alternative, but untested way to promote their use. The purpose of this study was to identify and define features that facilitate guideline use, and examine whether and how they are included in current guidelines.
Methods
A guideline implementability framework was developed by reviewing the implementation science literature. We then examined whether guidelines included these, or additional implementability elements. Data were extracted from publicly available high quality guidelines reflecting primary and institutional care, reviewed independently by two individuals, who through discussion resolved conflicts, then by the research team.
Results
The final implementability framework included 22 elements organized in the domains of adaptability, usability, validity, applicability, communicability, accommodation, implementation, and evaluation. Data were extracted from 20 guidelines on the management of diabetes, hypertension, leg ulcer, and heart failure. Most contained a large volume of graded, narrative evidence, and tables featuring complementary clinical information. Few contained additional features that could improve guideline use. These included alternate versions for different users and purposes, summaries of evidence and recommendations, information to facilitate interaction with and involvement of patients, details of resource implications, and instructions on how to locally promote and monitor guideline use. There were no consistent trends by guideline topic.
Conclusions
Numerous opportunities were identified by which guidelines could be modified to support various types of decision making by different users. New governance structures may be required to accommodate development of guidelines with these features. Further research is needed to validate the proposed framework of guideline implementability, develop methods for preparing this information, and evaluate how inclusion of this information influences guideline use.
doi:10.1186/1748-5908-6-26
PMCID: PMC3072935  PMID: 21426574
4.  Does accreditation stimulate change? A study of the impact of the accreditation process on Canadian healthcare organizations 
Background
One way to improve quality and safety in healthcare organizations (HCOs) is through accreditation. Accreditation is a rigorous external evaluation process that comprises self-assessment against a given set of standards, an on-site survey followed by a report with or without recommendations, and the award or refusal of accreditation status. This study evaluates how the accreditation process helps introduce organizational changes that enhance the quality and safety of care.
Methods
We used an embedded multiple case study design to explore organizational characteristics and identify changes linked to the accreditation process. We employed a theoretical framework to analyze various elements and for each case, we interviewed top managers, conducted focus groups with staff directly involved in the accreditation process, and analyzed self-assessment reports, accreditation reports and other case-related documents.
Results
The context in which accreditation took place, including the organizational context, influenced the type of change dynamics that occurred in HCOs. Furthermore, while accreditation itself was not necessarily the element that initiated change, the accreditation process was a highly effective tool for (i) accelerating integration and stimulating a spirit of cooperation in newly merged HCOs; (ii) helping to introduce continuous quality improvement programs to newly accredited or not-yet-accredited organizations; (iii) creating new leadership for quality improvement initiatives; (iv) increasing social capital by giving staff the opportunity to develop relationships; and (v) fostering links between HCOs and other stakeholders. The study also found that HCOs' motivation to introduce accreditation-related changes dwindled over time.
Conclusions
We conclude that the accreditation process is an effective leitmotiv for the introduction of change but is nonetheless subject to a learning cycle and a learning curve. Institutions invest greatly to conform to the first accreditation visit and reap the greatest benefits in the next three accreditation cycles (3 to 10 years after initial accreditation). After 10 years, however, institutions begin to find accreditation less challenging. To maximize the benefits of the accreditation process, HCOs and accrediting bodies must seek ways to take full advantage of each stage of the accreditation process over time.
doi:10.1186/1748-5908-5-31
PMCID: PMC2882897  PMID: 20420685
5.  An exploration of how guideline developer capacity and guideline implementability influence implementation and adoption: study protocol 
Background
Practice guidelines can improve health care delivery and outcomes but several issues challenge guideline adoption, including their intrinsic attributes, and whether and how they are implemented. It appears that guideline format may influence accessibility and ease of use, which may overcome attitudinal barriers of guideline adoption, and appear to be important to all stakeholders. Guideline content may facilitate various forms of decision making about guideline adoption relevant to different stakeholders. Knowledge and attitudes about, and incentives and capacity for implementation on the part of guideline sponsors may influence whether and how they develop guidelines containing these features, and undertake implementation. Examination of these issues may yield opportunities to improve guideline adoption.
Methods
The attributes hypothesized to facilitate adoption will be expanded by thematic analysis, and quantitative and qualitative summary of the content of international guidelines for two primary care (diabetes, hypertension) and institutional care (chronic ulcer, chronic heart failure) topics. Factors that influence whether and how guidelines are implemented will be explored by qualitative analysis of interviews with individuals affiliated with guideline sponsoring agencies.
Discussion
Previous research examined guideline implementation by measuring rates of compliance with recommendations or associated outcomes, but this produced little insight on how the products themselves, or their implementation, could be improved. This research will establish a theoretical basis upon which to conduct experimental studies to compare the cost-effectiveness of interventions that enhance guideline development and implementation capacity. Such studies could first examine short-term outcomes predictive of guideline utilization, such as recall, attitude toward, confidence in, and adoption intention. If successful, then long-term objective outcomes reflecting the adoption of processes and associated patient care outcomes could be evaluated.
doi:10.1186/1748-5908-4-36
PMCID: PMC3224968  PMID: 19573246
6.  The efficiency and effectiveness of utilizing diagrams in interviews: an assessment of participatory diagramming and graphic elicitation 
Background
This paper focuses on measuring the efficiency and effectiveness of two diagramming methods employed in key informant interviews with clinicians and health care administrators. The two methods are 'participatory diagramming', where the respondent creates a diagram that assists in their communication of answers, and 'graphic elicitation', where a researcher-prepared diagram is used to stimulate data collection.
Methods
These two diagramming methods were applied in key informant interviews and their value in efficiently and effectively gathering data was assessed based on quantitative measures and qualitative observations.
Results
Assessment of the two diagramming methods suggests that participatory diagramming is an efficient method for collecting data in graphic form, but may not generate the depth of verbal response that many qualitative researchers seek. In contrast, graphic elicitation was more intuitive, better understood and preferred by most respondents, and often provided more contemplative verbal responses, however this was achieved at the expense of more interview time.
Conclusion
Diagramming methods are important for eliciting interview data that are often difficult to obtain through traditional verbal exchanges. Subject to the methodological limitations of the study, our findings suggest that while participatory diagramming and graphic elicitation have specific strengths and weaknesses, their combined use can provide complementary information that would not likely occur with the application of only one diagramming method. The methodological insights gained by examining the efficiency and effectiveness of these diagramming methods in our study should be helpful to other researchers considering their incorporation into qualitative research designs.
doi:10.1186/1471-2288-8-53
PMCID: PMC2527311  PMID: 18691410
7.  Consensus guidelines on analgesia and sedation in dying intensive care unit patients 
BMC Medical Ethics  2002;3:3.
Background
Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia.
Methods
Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12).
Results
After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU.
Conclusion
Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
doi:10.1186/1472-6939-3-3
PMCID: PMC122088  PMID: 12171602
Palliation; Death; Sedation; Analgesia; Double effect; Terminal sedation; Euthanasia; Assisted suicide; Consensus guidelines; Intensive Care

Results 1-7 (7)