scholarly journals Down syndrome caregivers' support needs: a mixed‐method participatory approach

2020 ◽  
Vol 65 (1) ◽  
pp. 60-76
Author(s):  
K. M. Hart ◽  
N. Neil
Keyword(s):  
Down Syndrome ◽  
Mixed Method ◽  
Participatory Approach ◽  
Support Needs

scholarly journals ‘I’m fine!’: Assertions of lack of support need among patients with chronic obstructive pulmonary disease: A mixed-methods study

2021 ◽  
pp. 174239532110003
Author(s):  
A Carole Gardener ◽  
Caroline Moore ◽  
Morag Farquhar ◽  
Gail Ewing ◽  
Efthalia Massou ◽  
...  
Keyword(s):  
Chronic Obstructive Pulmonary Disease ◽  
Pulmonary Disease ◽  
Mixed Method ◽  
Self Report ◽  
Design Stage ◽  
Chronic Obstructive ◽  
Support Needs ◽  
Obstructive Pulmonary Disease ◽  
Stage 1 ◽  
The Impact

Objectives To understand how people with Chronic Obstructive Pulmonary Disease (COPD) disavow their support needs and the impact on care. Methods Two stage mixed-method design. Stage 1 involved sub-analyses of data from a mixed-method population-based longitudinal study exploring the needs of patients with advanced COPD. Using adapted criteria from mental health research, we identified 21 patients who disavowed their needs from the 235 patient cohort. Qualitative interview transcripts and self-report measures were analysed to compare these patients with the remaining cohort. In stage 2 focus groups (n = 2) with primary healthcare practitioners (n = 9) explored the implications of Stage 1 findings. Results Patients who disavowed their support needs described non-compliance with symptom management and avoidance of future care planning (qualitative data). Analysis of self-report measures of mental and physical health found this group reported fewer needs than the remaining sample yet wanted more GP contact. The link between risk factors and healthcare professional involvement present in the rest of the sample was missing for these patients. Focus group data suggested practitioners found these patients challenging. Discussion This study identified patients with COPD who disavow their support needs, but who also desire more GP contact. GPs report finding these patients challenging to engage.

scholarly journals Differentiating Aging Among Adults With Down Syndrome and Comorbid Dementia or Psychopathology

2016 ◽  
Vol 121 (1) ◽  
pp. 13-24 ◽  
Author(s):  
Anna J. Esbensen ◽  
Emily Boshkoff Johnson ◽  
Joseph L. Amaral ◽  
Christine M. Tan ◽  
Ryan Macks
Keyword(s):  
Differential Diagnosis ◽  
Down Syndrome ◽  
Behavior Problems ◽  
Social Life ◽  
Health Conditions ◽  
Support Needs ◽  
Functional Abilities ◽  
Comorbid Conditions ◽  
Clinical Diagnoses ◽  
Comorbid Psychopathology

Abstract Differences were examined between three groups of adults with Down syndrome in their behavioral presentation, social life/activities, health, and support needs. We compared those with comorbid dementia, with comorbid psychopathology, and with no comorbid conditions. Adults with comorbid dementia were more likely to be older, have lower functional abilities, have worse health and more health conditions, and need more support in self-care. Adults with comorbid psychopathology were more likely to exhibit more behavior problems and to be living at home with their families. Adults with no comorbidities were most likely to be involved in community employment. Differences in behavioral presentation can help facilitate clinical diagnoses in aging in Down syndrome, and implications for differential diagnosis and service supports are discussed.

Helping patients communicate with oncologists when cancer treatment resistance occurs: a sequential collaborative mixed-method study (HECTOR) to develop, test and implement a patient communication aid. (Preprint)

2020 ◽  
Author(s):  
Anne Bredart ◽  
Johanna Terrasson ◽  
Etienne Seigneur ◽  
Leanne De Koning ◽  
Elisabeth Hess ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Mixed Method ◽  
Metastatic Breast ◽  
Patient Communication ◽  
Support Needs ◽  
Cancer Resistance ◽  
Clinical Implementation ◽  
Advanced Cancer Patients ◽  
Process Step ◽  
Communication Aid

BACKGROUND Most cancer deaths result from disseminated disease that develops resistance to anti-cancer treatments. Inappropriate communication in this challenging situation may result in unmet patients’ information and support needs. Patient communication aids such as Question Prompt Lists (QPLs) may help. OBJECTIVE This study develops, tests and implements in France, a specific QPL in two contrasted clinical contexts after cancer resistance has developed: 1) the triple negative and luminal B metastatic breast cancer (MBC) and 2) metastatic uveal melanoma (MUM). METHODS A sequential study design, mixed-method collaborative approach is applied. The first step aims to build a specific QPL. Step 1a explores oncologist-patient communication issues, from oncology professionals’ interviews (n~30). Step 1b appraises information and support needs as experienced by patients affected with MBC or MUM, both quantitatively (n=80) and qualitatively (n~20). These data are used to further develop and adapt a QPL for advanced cancer patients, selected from a literature review. We expect to obtain a core QPL comprising questions and concerns commonly expressed by patients affected with a resistant cancer, complemented by specific issues for either MBC or MUM cancer sites. In step 1c, focus groups (n=2) of ‘expert’ cancer patients (n=3), oncologists (n=3) and supportive care specialists (n=3) are conducted to revise the content of a preliminary QPL and to elaborate an acceptable and feasible clinical implementation, potentially facilitated by a coaching intervention. In Step 1d, the content of the QPL V.1 and implementation guidance are validated in a national Delphi process. Step 2 tests the QPL V.1 in real practice with MBC and MUM patients (n=80). Clinical utility is assessed in a pre- versus post-test design, comparing responses to questionnaires administered in step 1b and step 2. RESULTS This study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of December 2020, 28 interviews with oncology professionals have been conducted and are being analyzed. CONCLUSIONS A clinically and culturally tailored QPL is expected to facilitate patients’ participation in consultations, to improve oncologists’ response to their information and support needs, and so foster patients’ psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment. CLINICALTRIAL NCT04118062

Inclusive Education: A Question of Justice

1996 ◽  
Vol 20 (2) ◽  
pp. 29-39 ◽  
Author(s):  
Maureen Whiting ◽  
Janelle Young
Keyword(s):  
Professional Development ◽  
Down Syndrome ◽  
Qualitative Study ◽  
Primary School ◽  
Inclusive Education ◽  
Support Needs ◽  
Exceptional Children ◽  
Exceptional Child ◽  
Professional Needs ◽  
Integrated Classrooms

This paper presents the findings of a qualitative study of the integration of an exceptional child with Down syndrome into a regular primary school. In investigating the demands made on the teachers in this situation, the researcher attempted to discover personal, professional development and support needs. The data revealed that there were greatly increased demands placed on the teachers of the exceptional child and their personal and professional needs were significant. The study concluded that it is only with adequate professional, financial and moral support of the entire school community that justice for teachers of exceptional children in integrated classrooms is both done and seen to be done.

Alopecia areata and Down syndrome

1976 ◽  
Vol 112 (10) ◽  
pp. 1397-1399 ◽  
Author(s):  
D. M. Carter
Keyword(s):  
Down Syndrome ◽  
Alopecia Areata
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