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1.
J Am Assoc Nurse Pract ; 35(11): 669-675, 2023 Nov 01.
Article in English | MEDLINE | ID: mdl-37159432

ABSTRACT

ABSTRACT: With a growing population of older adults living with dementia in the community, nurse practitioners (NPs) are increasingly expected to address issues of medical fitness to drive (MFTD) and driving cessation within their clinical practice. With their expertise in clinical assessment and communication skills, NPs are well suited to this area of practice. Studies that examined MFTD and/or driving cessation suggest that NPs want and need further knowledge and training with this population. As part of our aim to develop an online educational program on driving and dementia for health care providers, including NPs, this mixed-methods study explored NPs' preferences regarding the format and content for the proposed online program. Results from an online survey completed by 90 NPs and interviews with six NPs highlighted key areas of focus for virtual modules, where communication strategies, tools to assess MFTD, and the reporting process for medically unfit drivers were emphasized. Reflecting on their team approach to care, participants in this study preferred a hybrid approach of asynchronous and synchronous learning delivery for this educational program. The next step will be to evaluate this program and its impact on both NP knowledge and skills in terms of its real-world application.


Subject(s)
Dementia , Education, Distance , Nurse Practitioners , Humans , Aged , Nurse Practitioners/education , Learning , Dementia/therapy
2.
Cancer Med ; 12(7): 8676-8689, 2023 04.
Article in English | MEDLINE | ID: mdl-36775957

ABSTRACT

BACKGROUND: Childhood cancer survivors face education and employment challenges due to physical, cognitive, and psychosocial effects of the disease and treatments, with few established programs to assist them. The objectives of this study were to describe the implementation of Goal Attainment Scaling (GAS) to evaluate an educational and vocational counseling program established for survivors of childhood cancer, and analyze patterns of program engagement and client outcomes, stratified by demographic and diagnostic characteristics. METHODS: A population-based retrospective cohort study of childhood cancer survivors who were engaged with the Pediatric Oncology Group of Ontario's School and Work Transitions Program (SWTP) between January 2015 and December 2018 was utilized. Survivors were followed from SWTP engagement until May 30, 2019 to capture goal attainment. Individual goals were summarized across various demographic, disease, and treatment strata. RESULTS: In total, 470 childhood cancer survivors (median age = 17.9, 58% male) set 4,208 goals in the SWTP during the study period. The mean length of observation was 130.8 weeks (SD = 56.9). Overall, 68% of the goals were achieved. Eighty-three percent of the goals related to further education. Clients diagnosed with a solid tumor set the most goals on average, followed by those with central nervous system tumors and leukemia/lymphoma. CONCLUSIONS: The SWTP assists childhood cancer survivors in realizing their academic and vocational goals. Application of GAS in this setting is a feasible way to evaluate program outcomes. From the volume and breadth of the GAS goals set and achieved, the overall success of the SWTP appears strong.


Subject(s)
Cancer Survivors , Central Nervous System Neoplasms , Humans , Male , Child , Adolescent , Female , Retrospective Studies , Goals , Survivors/psychology , Counseling
3.
Int Psychogeriatr ; : 1-14, 2023 Jan 30.
Article in English | MEDLINE | ID: mdl-36710624

ABSTRACT

OBJECTIVES: Despite three decades of research, gaps remain in meeting the needs of people with dementia and their family/friend carers as they navigate the often-tumultuous process of driving cessation. This paper describes the process of using a knowledge-to-action (KTA) approach to develop an educational web-based resource (i.e. toolkit), called the Driving and Dementia Roadmap (DDR), aimed at addressing some of these gaps. DESIGN: Aligned with the KTA framework, knowledge creation and action cycle activities informed the development of the DDR. These activities included systematic reviews; meta-synthesis of qualitative studies; interviews and focus groups with key stakeholders; development of a Driving and Dementia Intervention Framework (DD-IF); and a review and curation of publicly available resources and tools. An Advisory Group comprised of people with dementia and family carers provided ongoing feedback on the DDR's content and design. RESULTS: The DDR is a multi-component online toolkit that contains separate portals for current and former drivers with dementia and their family/friend carers. Based on the DD-IF, various topics of driving cessation are presented to accommodate users' diverse stages and needs in their experiences of decision-making and transitioning to non-driving. CONCLUSION: Guided by the KTA framework that involved a systematic and iterative process of knowledge creation and translation, the resulting person-centered, individualized and flexible DDR can bring much-needed support to help people with dementia and their families maintain their mobility, community access, and social and emotional wellbeing during and post-driving cessation.

4.
Gerontologist ; 63(1): 140-154, 2023 01 24.
Article in English | MEDLINE | ID: mdl-35926470

ABSTRACT

BACKGROUND AND OBJECTIVES: The prospect of automated vehicles (AVs) has generated excitement among the public and the research community about their potential to sustain the safe driving of people with dementia. However, no study to date has assessed the views of people with dementia on whether AVs may address their driving challenges. RESEARCH DESIGN AND METHODS: This mixed-methods study included two phases, completed by nine people with dementia. Phase I included questionnaires and individual semistructured interviews on attitudes toward using different types of AVs (i.e., partially or fully automated). Interpretative phenomenological analysis was used to assess participants' underlying reasons for and against AV use. The participants' identified reasons against AV use informed the focus group discussions in Phase II, where participants were asked to reflect on potential means of overcoming their hesitancies regarding AV use. RESULTS: The results showed that people with dementia might place higher levels of trust in fully automated compared to partially automated AVs. In addition, while people with dementia expressed multiple incentives to use AVs (e.g., regaining personal freedom), they also had hesitations about AV use. These hesitancies were based on their perceptions about AVs (e.g., cost), their own abilities (i.e., potential challenges operating an AV), and driving conditions (i.e., risk of driving in adverse weather conditions). DISCUSSION AND IMPLICATIONS: The findings of this study can help promote the research community's appreciation and understanding of the significant potential of AVs for people with dementia while elucidating the potential barriers of AV use by people with dementia.


Subject(s)
Automobile Driving , Dementia , Humans , Autonomous Vehicles , Attitude , Qualitative Research , Accidents, Traffic
5.
Child Obes ; 18(6): 409-421, 2022 09.
Article in English | MEDLINE | ID: mdl-35085455

ABSTRACT

Background: We developed a multicomponent, family-based intervention for young children with obesity consisting of parent group sessions, home nursing visits, and multidisciplinary clinical encounters. Our objective was to assess intervention feasibility, acceptability, and implementation. Methods: From 2017 to 2020, we conducted a multiple methods study in the obesity management clinic at a tertiary children's hospital (Toronto, Canada). We included 1-6 year olds with a body mass index ≥97th percentile and their parents; we also included health care providers (HCPs) who delivered the intervention. To assess feasibility, we performed a pilot randomized controlled trial (RCT) comparing the intervention to usual care. To explore acceptability, we conducted parent focus groups. To explore implementation, we examined contextual factors with HCPs using the Consolidated Framework for Implementation Research. Results: There was a high level of ineligibility (n = 34/61) for the pilot RCT. Over 21 months, 11 parent-child dyads were recruited; of 6 randomized to the intervention, 3 did not participate in group sessions or home visits. In focus groups, themes identified by parents (n = 8) related to information provided at referral; fit between the intervention and patient needs; parental gains from participating in the intervention; and feasibility of group sessions. HCPs (n = 10) identified contextual factors that were positively and negatively associated with intervention implementation. Conclusions: We encountered challenges related to intervention feasibility, acceptability, and implementation. Lessons learned from this study will inform the next iteration of our intervention and are relevant to intervention development and implementation for young children with obesity. Clinical Trial Registration number: NCT03219658.


Subject(s)
Pediatric Obesity , Body Mass Index , Canada , Child , Child, Preschool , Feasibility Studies , Humans , Parents , Pediatric Obesity/therapy
6.
Gerontology ; 68(1): 106-120, 2022.
Article in English | MEDLINE | ID: mdl-33895746

ABSTRACT

INTRODUCTION: An active lifestyle may protect older adults from cognitive decline. Yet, due to the complex nature of outdoor environments, many people living with dementia experience decreased access to outdoor activities. In this context, conceptualizing and measuring outdoor mobility is of great significance. Using the global positioning system (GPS) provides an avenue for capturing the multi-dimensional nature of outdoor mobility. The objective of this study is to develop a comprehensive framework for comparing outdoor mobility patterns of cognitively intact older adults and older adults with dementia using passively collected GPS data. METHODS: A total of 7 people with dementia (PwD) and 8 cognitively intact controls (CTLs), aged 65 years or older, carried a GPS device when travelling outside their homes for 4 weeks. We applied a framework incorporating 12 GPS-based indicators to capture spatial, temporal, and semantic dimensions of outdoor mobility. RESULTS: Despite a small sample size, the application of our mobility framework identified several significant differences between the 2 groups. We found that PwD participated in more medical-related (Cliff's Delta = 0.71, 95% CI: 0.34-1) and fewer sport-related (Cliff's Delta = -0.78, 95% CI: -1 to -0.32) activities compared to the cognitively intact CTLs. Our results also suggested that longer duration of daily walking time (Cliff's Delta = 0.71, 95% CI: 0.148-1) and longer outdoor activities at night, after 8 p.m. (Hedges' g = 1.42, 95% CI: 0.85-1.09), are associated with cognitively intact individuals. CONCLUSION: Based on the proposed framework incorporating 12 GPS-based indicators, we were able to identify several differences in outdoor mobility in PwD compared with cognitively intact CTLs.


Subject(s)
Cognitive Dysfunction , Dementia , Activities of Daily Living , Aged , Geographic Information Systems , Humans , Walking
7.
Gerontologist ; 62(7): 1050-1062, 2022 08 12.
Article in English | MEDLINE | ID: mdl-34971373

ABSTRACT

BACKGROUND AND OBJECTIVES: Driving cessation is a complex challenge with significant emotional and health implications for people with dementia, which also affects their family care partners. Automated vehicles (AVs) could potentially be used to delay driving cessation and its adverse consequences for people with dementia and their care partners. Yet, no study to date has investigated whether care partners consider AVs to be potentially useful for people with dementia. RESEARCH DESIGN AND METHODS: This mixed-methods study assessed the views of 20 former or current family care partners of people with dementia on AV use by people with dementia. Specifically, questionnaires and semistructured interviews were used to examine care partners' acceptance of AV use by people with dementia and their views about the potential usefulness of AVs for people with dementia. RESULTS: The results demonstrated that care partners identified possible benefits of AV use by people with dementia such as their anticipated higher social participation. However, care partners also voiced major concerns around AV use by people with dementia and reported significantly lower levels of trust in and perceived safety of AVs if used by the person with dementia in their care compared to themselves. Care partners' concerns about AV use by people with dementia included concerns around the driving of people with dementia that AVs are not designed to address; concerns that are specific to AVs but are not relevant to the nonautomated driving of people with dementia; and concerns that arise from existing challenges around the nonautomated driving of people with dementia but may be exacerbated by AV use. DISCUSSION AND IMPLICATIONS: Findings from this study can inform future designs of AVs that are more accessible and useful for people with dementia.


Subject(s)
Automobile Driving , Dementia , Automobile Driving/psychology , Autonomous Vehicles , Caregivers/psychology , Dementia/psychology , Humans , Surveys and Questionnaires
8.
J Med Internet Res ; 23(3): e25505, 2021 03 03.
Article in English | MEDLINE | ID: mdl-33656445

ABSTRACT

BACKGROUND: Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. OBJECTIVE: The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. METHODS: The study was a hybrid type II mixed methods design to simultaneously evaluate Loop's clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. RESULTS: We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop's potential value for engaging the patient and caregiver, and for improving communication within the patient's circle of care, Loop's relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. CONCLUSIONS: Fundamental structural and implementation challenges persist toward realizing Loop's potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.


Subject(s)
Communication , Patient Portals , Adult , Caregivers , Child , Electronic Health Records , Health Personnel , Humans
9.
JMIR Aging ; 3(2): e18008, 2020 Jul 28.
Article in English | MEDLINE | ID: mdl-32720647

ABSTRACT

BACKGROUND: Outdoor mobility is an important aspect of older adults' functional status. GPS has been used to create indicators reflecting the spatiotemporal dimensions of outdoor mobility for applications in health and aging. However, outdoor mobility is a multidimensional construct. There is, as of yet, no classification algorithm that groups and characterizes older adults' outdoor mobility based on its semantic aspects (ie, mobility intentions and motivations) by integrating geographic and domain knowledge. OBJECTIVE: This study assesses the feasibility of using GPS to determine semantic dimensions of older adults' outdoor mobility, including destinations and activity types. METHODS: A total of 5 healthy individuals, aged 65 years or older, carried a GPS device when traveling outside their homes for 4 weeks. The participants were also given a travel diary to record details of all excursions from their homes, including date, time, and destination information. We first designed and implemented an algorithm to extract destinations and infer activity types (eg, food, shopping, and sport) from the GPS data. We then evaluated the performance of the GPS-derived destination and activity information against the traditional diary method. RESULTS: Our results detected the stop locations of older adults from their GPS data with an F1 score of 87%. On average, the extracted home locations were within a 40.18-meter (SD 1.18) distance of the actual home locations. For the activity-inference algorithm, our results reached an F1 score of 86% for all participants, suggesting a reasonable accuracy against the travel diary recordings. Our results also suggest that the activity inference's accuracy measure differed by neighborhood characteristics (ie, Walk Score). CONCLUSIONS: We conclude that GPS technology is accurate for determining semantic dimensions of outdoor mobility. However, further improvements may be needed to develop a robust application of this system that can be adopted in clinical practice.

10.
Gerontologist ; 60(7): 1261-1272, 2020 09 15.
Article in English | MEDLINE | ID: mdl-32301497

ABSTRACT

BACKGROUND AND OBJECTIVES: Despite the well-recognized difficulty that persons with dementia and family carers experience in the decision making and transition to nondriving, there are few interventions and resources to support them. As part of our ongoing research to develop a driving cessation toolkit that addresses this gap, we sought to examine the context-specific factors relevant to its effective implementation in settings that support older adults with dementia. RESEARCH DESIGN AND METHODS: A qualitative descriptive approach was used to explore the perspectives of Alzheimer Society (AS) staff in their work of supporting people with dementia and family carers within the context of driving cessation. Individual in-depth interviews were conducted with 15 AS staff members in 4 Canadian provinces. Data were examined using interpretative thematic analysis. RESULTS: The study results revealed an overarching paradox that despite the importance of driving cessation in people with dementia, it continues to be largely avoided at the individual and system levels. This is explored via the themes of (a) paradox of importance and avoidance identified in AS settings; (b) lack of awareness and understanding about dementia and driving among people with dementia and family carers; (c) distress and avoidance rooted in ongoing system issues; and (d) moving driving cessation to the "front burner." DISCUSSION AND IMPLICATIONS: Viewed through the emerging social health paradigm, which focuses on the social and emotional consequences of dementia, our results highlight the urgent need to mobilize our communities, medical education systems, and transportation authorities to finally resolve the dementia and driving cessation paradox.


Subject(s)
Automobile Driving , Dementia , Aged , Canada , Caregivers , Health Behavior , Humans , Qualitative Research
11.
Soc Sci Med ; 253: 112948, 2020 05.
Article in English | MEDLINE | ID: mdl-32244151

ABSTRACT

Trust is vital in mental healthcare where uncertainty and risk prevail and where relationship building is central to effective service delivery. Despite its significance, research on trust, particularly among multi-disciplinary healthcare teams and between service providers and users is limited and explored only tangentially within early psychosis intervention (EPI) programs. An institutional ethnographic approach is used to examine how trust within an EPI setting is produced and operates. Drawing on participant observation, textual analysis of clinic documents and in-depth interviews with 27 participants (staff, young people and family members), our analysis outlines how the clinic manager's and staff's resistance to hospital rulings that impeded EPI policy principles were part of the extended sequence of activities that produced trust. These acts of resistance, alongside the clinic manager's reflective leadership practices, cultivated spaces for staff to take risks, share their ideas and build consensus - culminating in staff-designed protocols that produced trust among one another, and between service providers and young people and their families. Drawing from Brown and Calnan's framework of "vicious" and "virtuous" cycles of (dis)trust, we highlight how management and staff responses to vulnerability and uncertainty generated trust through their communication practices and knowledge sharing. We also suggest that protocols to manage the risk of medication non-adherence and treatment dis-engagement among young people contained regulatory functions, pointing to the complex interplay of trust, control and risk. Study implications suggest shifting the emphasis from risk management and quality governance as an organizing framework in mental health to a framework based on trust.


Subject(s)
Psychotic Disorders , Trust , Adolescent , Communication , Delivery of Health Care , Humans , Mental Health , Psychotic Disorders/therapy
12.
J Can Acad Child Adolesc Psychiatry ; 28(3): 99-104, 2019 Nov.
Article in English | MEDLINE | ID: mdl-31798648

ABSTRACT

BACKGROUND: This study explores the physician referral and engagement process of a pediatric telemental health program based in a large urban teaching children's hospital, and identifies the processes, strengths and challenges from the perspectives of Primary Care Physicians (PCPs) and telepsychiatrist consultants. METHODS: A mixed methods approach was used. This included an online survey completed by 43 PCPs in Ontario rural communities who had referred patients to the telemental health program. Qualitative interviews were conducted with 11 child/adolescent telepsychiatrists who provide consultations via teleconferencing. RESULTS: The majority of PCPs (61%) reported somewhat to moderate satisfaction with referral experiences. Challenges identified by physicians were related to communication and administration issues including: lack of timely follow-up appointments and continuity of care; lengthy referral forms; and recommendations for mental health services not accessible in their communities. Similarly, psychiatrist consultants expressed frustration with the sparse information they received from referring physicians and most significantly, the absence of appropriate service providers/professionals during the consultation to provide collateral information and ensure uptake of recommendations. CONCLUSION: Telemental health programs provide a valuable service to PCPs and their child and youth clients that could be significantly enhanced with a different consultation model. Such models of service delivery require protocols to educate PCPs, improve communication and information sharing and establish clear expectations between PCPs and telepsychiatry consultants.


CONTEXTE: Cette étude explore l'aiguillage d'un médecin et le processus de participation à un programme de télésanté mentale pédiatrique situé dans un vaste hôpital universitaire pour enfants en milieu urbain, et mentionne les processus, les forces et les difficultés du point de vue des médecins des soins de première ligne (MPL) et des télépsychiatres consultants. MÉTHODES: Une approche de méthodes mixtes a été utilisée, ce qui comprenait un sondage en ligne auquel ont répondu 43 MPL des communautés rurales de l'Ontario qui avaient aiguillé des patients au programme de télésanté mentale. Des entrevues qualitatives ont été menées auprès de 11 télépsychiatres de l'enfant et de l'adolescent qui offrent des consultations par téléconférence. RÉSULTATS: La majorité des MPL (61 %) ont déclaré une satisfaction de passable à modérée à l'égard des expériences d'aiguillage. Les difficultés identifiées par les médecins étaient liées aux enjeux de communication et d'administration, notamment l'absence de rendez-vous de suivi ponctuels et de continuité des soins; les formulaires d'aiguillage fastidieux; et les recommandations de services de santé mentale qui ne sont pas offerts dans leur communauté. De même, les psychiatres consultants ont exprimé leur frustration quant à l'information insuffisante reçue des médecins de l'aiguillage et surtout, en raison de l'absence de prestataires/professionnels appropriés durant la consultation qui apporteraient l'information collatérale et assureraient l'adoption des recommandations. CONCLUSION: Les programmes de télésanté mentale fournissent un service valable aux MPL et à leurs clients pédiatriques, mais ils pourraient être améliorés significativement par un modèle de consultation différent. Ces modèles de prestation des services exigent des protocoles pour éduquer les MPL, améliorer l'échange de communication et d'information, et établir des attentes bien définies entre MPL et consultants en télépsychiatrie.

13.
J Pediatr Hematol Oncol ; 36(7): 559-65, 2014 Oct.
Article in English | MEDLINE | ID: mdl-24577546

ABSTRACT

This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.


Subject(s)
Decision Making , Patient Participation/psychology , Purpura, Thrombocytopenic, Idiopathic/psychology , Purpura, Thrombocytopenic, Idiopathic/therapy , Adolescent , Anxiety/psychology , Child , Confusion/psychology , Fear/psychology , Female , Focus Groups , Hemorrhage/psychology , Hemorrhage/therapy , Humans , Male , Parents/psychology , Psychology, Adolescent , Psychology, Child , Purpura, Thrombocytopenic, Idiopathic/diagnosis , Registries
14.
Early Interv Psychiatry ; 7(2): 193-9, 2013 May.
Article in English | MEDLINE | ID: mdl-22404861

ABSTRACT

AIM: To identify factors that contribute to the initiation of alcohol and street drug use from the perspective of people who were enrolled in early intervention programmes for a first episode of psychosis. METHOD: Eight focus groups were conducted involving an average of four to six participants per group, with each group consisting of young people who met provincial inclusion criteria for early intervention programmes. Thematic analysis was used to systematically code transcripts from the focus groups for concepts, patterns and themes related to early use of illicit substances. RESULTS: Participants included 45 young people diagnosed with affective psychosis or non-affective spectrum disorders. Seventy-three percent were male, with a median age of 23 years. In general, substance use was an important topic that emerged across all focus groups. Participants talked about three main factors attracting them to initiate use of substances, most predominantly cannabis: (i) using within a social context; (ii) using as a self-medication strategy; and (iii) using to alter their perceptions. CONCLUSIONS: The need for social relationships, coping strategies and pleasurable experiences appear to be important reasons for initiating substance use. Additional research is needed to identify whether prodromal youth report the same factors that attract them to initiate use in order to develop more effective prevention strategies.


Subject(s)
Alcohol Drinking/psychology , Psychotic Disorders/psychology , Substance-Related Disorders/psychology , Adolescent , Adult , Female , Focus Groups , Humans , Interpersonal Relations , Male , Pleasure , Psychotic Disorders/complications , Self Medication/psychology , Substance-Related Disorders/complications , Young Adult
15.
Early Interv Psychiatry ; 7(2): 170-86, 2013 May.
Article in English | MEDLINE | ID: mdl-22390350

ABSTRACT

AIM: This paper aims to identify the ways in which youth at ultra high risk for psychosis access mental health services and the factors that advance or delay help seeking, using the Revised Network Episode Model (REV NEM) of mental health care. METHODS: A case study approach documents help-seeking pathways, encompassing two qualitative interviews with 10 young people and 29 significant others. Theoretical propositions derived from the REV NEM are explored, consisting of the content, structure and function of the: (i) family; (ii) community and school; and (iii) treatment system. RESULTS: Although the aspects of the REV NEM are supported and shape pathways to care, we consider rethinking the model for help seeking with youth at ultra high risk for psychosis. CONCLUSIONS: The pathway concept is important to our understanding of how services and supports are received and experienced over time. Understanding this process and the strategies that support positive early intervention on the part of youth and significant others is critical.


Subject(s)
Mental Health Services , Patient Acceptance of Health Care/psychology , Psychotic Disorders/psychology , Adolescent , Family/psychology , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Models, Psychological , Residence Characteristics , Risk , Schools , Young Adult
16.
J Med Ethics ; 37(8): 504-9, 2011 Aug.
Article in English | MEDLINE | ID: mdl-21636608

ABSTRACT

BACKGROUND: In Canadian jurisdictions without specific legislation pertaining to research consent, the onus is placed on researchers to determine whether a child is capable of independently consenting to participate in a research study. Little, however, is known about how child health researchers are approaching consent and capacity assessment in practice. The aim of this study was to explore and describe researchers' current practices. METHODS: The study used a qualitative descriptive design consisting of 14 face-to-face interviews with child health researchers and research assistants in Southern Ontario. Transcribed interviews were analysed for common themes. RESULTS: Procedures for assessing capacity varied considerably from the use of age cutoffs to in-depth engagement with each child. Three key issues emerged from the accounts: (1) requirements that consent be provided by a single person thwarted researchers' abilities to support family decision-making; (2) little practical distinction was made between assessing if a child was capable, versus determining if study information had been adequately explained by the researcher; and (3) participants' perceived that review boards' requirements may conflict with what they considered ethical consent practices. CONCLUSION: The results suggest that researchers' consent and capacity knowledge and skills vary considerably. Perceived discrepancies between ethical practice and ethics boards' requirements suggest the need for dialogue, education and possibly ethics board reforms. Furthermore we propose, where appropriate, a 'family decision-making' model that allows parents and their children to consent together, thereby shifting the focus from separate assent and consent procedures to approaches that appropriately engage the child and family.


Subject(s)
Decision Making , Informed Consent By Minors/ethics , Child , Child Welfare , Comprehension , Harm Reduction , Humans , Information Dissemination/methods , Informed Consent By Minors/legislation & jurisprudence , Parent-Child Relations , Personal Autonomy , Qualitative Research
17.
Early Interv Psychiatry ; 4(1): 7-24, 2010 Feb.
Article in English | MEDLINE | ID: mdl-20199476

ABSTRACT

AIM: The aim of this paper is to provide a descriptive review of published qualitative research studies on first episode psychosis (FEP). METHODS: A review was undertaken to describe the findings of qualitative studies in early psychosis. Keyword searches in Medline, CINAHL, ASSIA, PsychINFO databases, as well as manual searches of other relevant journals and reference lists of primary papers, were conducted. RESULTS: Thirty-one qualitative papers (representing 27 discrete studies) were identified. The majority reported research concerning young people based in community settings. The research studies were organized according to the following generic social processes: (i) achieving identity; (ii) acquiring perspectives; (iii) doing activity; and, (iv) experiencing relationships. The papers reviewed are based on first-person accounts obtained from individuals who have experienced FEP, their family members and service providers. CONCLUSION: This descriptive review contributes to our understanding of the complex social processes of achieving identity, acquiring perspectives, doing activities and developing relationships as experienced by young people and the significant others in their world. The cumulative findings highlight the contextually rich and detailed information made possible through qualitative studies of FEP. They begin to account for the active engagement of individuals affected by psychosis in making sense of their experience and suggest that this experience should be understood from within young people's own framework of meaning.


Subject(s)
Psychotic Disorders/psychology , Qualitative Research , Employment , Humans , Interpersonal Relations , Mental Health Services , Patient Acceptance of Health Care/psychology , Psychotic Disorders/diagnosis , Social Environment , Social Identification
18.
Implement Sci ; 3: 19, 2008 Apr 09.
Article in English | MEDLINE | ID: mdl-18400090

ABSTRACT

BACKGROUND: Children with emotional and behavioural disorders should be able to count on receiving care that meets their needs and is based on the best scientific evidence available, however, many do not receive these services. Implementation of evidence-based practice (EBP) relies, in part, on the research utilization practices of mental health care providers. This study reports on a survey of research utilization practices among 80 children's mental health (CMH) service provider organizations in Ontario, Canada. METHODS: A web-based survey was distributed to 80 CMH service provider organizations, to which 51 executive directors and 483 children's mental health practitioners responded. Research utilization was assessed using questions with Likert-type responses based on the Canadian Health Services Research Foundation's Four-A's approach: access, assess, adapt, apply. RESULTS: There was general agreement among executive directors and practitioners regarding the capacity of their organizations to use - access, assess, adapt, and apply - research evidence. Overall, both groups rated their organizations as using research information 'somewhat well.' The low response rate to the practitioner survey should be noted. CONCLUSION: These findings provide a useful benchmark from which changes in reported research utilization in the Ontario CMH sector can be tracked over time, as a function of EBP training and implementation initiatives, for instance. The need to improve access to research evidence should be addressed because it relates to the eventual implementation and uptake of evidence-based practices. Communities of practice are recommended as a strategy that would enable practitioners to build capacity in their adaptation and application of research evidence.

19.
J Pediatr Oncol Nurs ; 25(3): 164-74, 2008.
Article in English | MEDLINE | ID: mdl-18353751

ABSTRACT

Multimodal therapy for the treatment of childhood cancer has resulted in increased survival rates, yet as growing cohorts of children mature, late effects are becoming apparent. Specifically, brain tumor survivors tend to have poor social skills, peer relationship problems, academic difficulties, and delayed college entry. This article addresses findings specific to the unique experience of childhood cancer survivors as they transition from adolescence to adulthood. Qualitative methods involving focus groups and in-depth interviews with 14 childhood cancer survivors and 22 family members were used. The dialectic of incompetence/competence pervaded all narratives. Contradictory concepts of integration/ isolation, realistic/unrealistic goals, and the need for special help/no help were underscored by respondents. The struggle to deal with these contradictory factors led to the simultaneous resistance and acceptance of feelings of competence.


Subject(s)
Adaptation, Psychological , Brain Neoplasms/psychology , Cognition Disorders/psychology , Self Efficacy , Social Behavior , Survivors/psychology , Adolescent , Adult , Attitude to Health , Brain Neoplasms/complications , Child , Cognition Disorders/etiology , Cognition Disorders/prevention & control , Education, Special , Female , Focus Groups , Health Services Needs and Demand , Humans , Interpersonal Relations , Male , Narration , Nursing Methodology Research , Ontario , Peer Group , Psychology, Adolescent , Psychology, Child , Qualitative Research , Social Isolation , Surveys and Questionnaires
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