scholarly journals A Mixed-Methods Feasibility Study of Integrated Pediatric Complex Care: Experiences of Parents With Care and the Value of Parent Engagement in Research

2021 ◽  
Vol 2 ◽  
Author(s):  
Oksana Hlyva ◽  
Charlene Rae ◽  
Shelby Deibert ◽  
Rakhshan Kamran ◽  
Haniah Shaikh ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Groups ◽  
Feasibility Study ◽  
Parent Engagement ◽  
Well Being ◽  
Recruitment Rate ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Care Experience ◽  
Family Centered

Introduction: Children with medical complexity (CMC) are among the most vulnerable children in society. These children and their families face challenges of fragmented care and are at risk for poorer health outcomes. Families with CMC play a vital role in providing care and navigating the complexities of healthcare systems. It is essential to understand the best ways to engage these families in research to improve the care and optimize the health of CMC.Objectives: This study explored parent engagement within the context of a feasibility study evaluating an Integrated Tertiary Complex Care (ITCC) clinic created to support CMC closer to home. This paper aimed: (1) to understand the family experiences of care and (2) to explore parent engagement in the study.Method: This mixed-methods feasibility study included three components. First, feedback from focus groups was used to identify the common themes that informed interviews with parents. Second, one-on-one interviews were conducted with parents to explore their experience with care, such as the ITCC clinic, using an interpretative description approach. Third, the questionnaires were completed by parents at baseline and 6-months post-baseline. These questionnaires included demographic and cost information and three validated scales designed to measure the caregiver strain, family-centered care, and parental health. The recruitment rate, percentage completion of the questionnaires, and open-ended comments were used to assess parent engagement in the study.Results: The focus groups involved 24 parents, of which 19 (14 women, five men) provided comments. The findings identified the importance of Complex Care Team (CC Team) accessibility, local access, and family-centered approach to care. The challenges noted were access to homecare nursing, fatigue, and lack of respite affecting caregiver well-being. In this study, 17 parents participated in one-on-one interviews. The identified themes relevant to care experience were proximity, continuity, and coordination of care. The parents who received care through the ITCC clinic appreciated receiving care closer to home. The baseline questionnaires were completed by 44 of 77 (57%) eligible parents. Only 24 (31%) completed the 6-month questionnaire. The challenges with study recruitment and follow-up were identified.Conclusion: Family engagement was a challenging yet necessary endeavor to understand how to tailor the healthcare to meet the complex needs of families caring for CMC.

Impact of Engaging Students in Health Survey Data Analysis and as Full Partners in School Change: Results From a Mixed Methods Study

2021 ◽  
pp. 152483992110484
Author(s):  
Helen M. Beattie ◽  
Courtney A. FitzGerald ◽  
Sharon N. Koller ◽  
Karen S. Scott ◽  
Bernice Raveche Garnett ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Focus Groups ◽  
Risk Behavior ◽  
Youth Development ◽  
School Change ◽  
Well Being ◽  
Youth Risk Behavior Survey ◽  
Youth Risk Behavior ◽  
Health And Well Being

Young people demand and deserve participation in shaping the health and well-being of their community. Getting to Y: Youth Bring Meaning to the Youth Risk Behavior Survey (GTY) is a positive youth development initiative, whereby students analyze local youth health data and create change. This article adds definitive evidence to support the theoretical foundations of GTY expounded by Garnett et al. (2019). A mixed methods convergent study design, collecting quantitative data from pre- and postintervention surveys and qualitative data from focus groups, was enacted during the 2018–2019 school year. Survey participants were 256 students attending 20 Vermont middle/high schools. Surveys measured self-efficacy, health literacy, civic engagement, resiliency, and knowledge. Focus groups with 50 students solicited open-ended feedback. Wilcoxon signed-rank tests determined student-level change over time. Focus group transcripts were coded using grounded theory and a priori codes from the survey. Statistically significant improvements were seen in average scores from pre- to postintervention surveys in all five domains and differences in effect by gender. Results from the focus group complement the quantitative findings. Participation in GTY positively affected youth participant’s understanding of their own health and well-being and increased agency to take action on behalf of themselves and their community. As the Youth Risk Behavior Survey is available nationwide, GTY is poised for replication to critically engage youth with relevant data to inform social change.

scholarly journals Improving access to organ donor registration in general practice: a feasibility study

2020 ◽  
Vol 70 (696) ◽  
pp. e497-e504
Author(s):  
Catrin P Penn-Jones ◽  
Chris Papadopoulos ◽  
Gurch Randhawa ◽  
Zeeshan Asghar
Keyword(s):  
Decision Making ◽  
General Practice ◽  
Mixed Methods ◽  
Focus Groups ◽  
Feasibility Study ◽  
Organ Donor ◽  
Mixed Methods Design ◽  
Waiting Room ◽  
Face To Face ◽  
The Uk

BackgroundOrgan donor registration helps guide decision making for families. UK general practice provides the facility to register on the NHS Organ Donor Register, but only to new patients. An intervention was developed to present a registration opportunity to existing patients in this setting.AimTo assess the feasibility and acceptability of an organ donation intervention implemented in UK general practice.Design and settingThe intervention ran in a large practice in Luton in the UK, for 3 months in 2018. A single practice feasibility study was conducted using an embedded experimental mixed methods design.MethodStaff were trained to ask patients in consultations if they wished to join the register, and leaflets and posters were displayed in the waiting room. Data on feasibility and acceptability were captured using SystmONE questionnaires, surveys, and focus groups.ResultsOver 3 months, in 12.4% of face-to-face consultations, patients were asked if they would like to join the register (812 of 6569), and 244 (30.0%) of these patients joined the register. Common reasons staff did not ask patients were due to telephone consultations, lack of time, and it not being appropriate. Nurses and healthcare assistants performed prompted choice more than doctors (23.4%, 17.1%, and 1.6% respectively). Certain clinic types, such as phlebotomy or routine clinics, facilitated asking compared to those where patients presented with unknown or more serious issues.ConclusionThe intervention was found to be feasible and acceptable by some staff and patients. Feasibility criteria were met; therefore, the intervention can progress to further testing.

scholarly journals Vocational rehabilitation to enhance return to work after trauma (ROWTATE): protocol for a non-randomised single-arm mixed-methods feasibility study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Denise Kendrick ◽  
◽  
Roshan das Nair ◽  
Blerina Kellezi ◽  
Richard Morriss ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Qualitative Study ◽  
Return To Work ◽  
Focus Groups ◽  
Vocational Rehabilitation ◽  
Case Studies ◽  
Feasibility Study ◽  
Traumatic Injuries

Abstract Background Traumatic injuries are common amongst working-age adults. Survivors often experience physical and psychological problems, reduced quality of life and difficulty returning to work. Vocational rehabilitation improves work outcomes for a range of conditions but evidence of effectiveness for those with traumatic injuries is lacking. This study assesses feasibility of delivering a vocational rehabilitation intervention to enhance return to work and improve quality of life and wellbeing in people with at least moderate trauma to inform design of a definitive randomised controlled trial (RCT). Methods Non-randomised, single-arm, multi-centre mixed-methods feasibility study with nested case studies and qualitative study. The case studies comprise interviews, observations of clinical contacts and review of clinical records. The qualitative study comprises interviews and/or focus groups. Participants will be recruited from two UK major trauma centres. Participants will comprise 40 patients aged 16–69 with an injury severity score of > 8 who will receive the intervention and complete questionnaires. Interviews will be conducted with 10 patients and their occupational therapists (OTs), clinical psychologists (CPs), employers and commissioners of rehabilitation services. Fidelity will be assessed in up to six patients by observations of OT and CP—patient contacts, review of patient records and intervention case report forms. OT and CP training will be evaluated using questionnaires and competence to deliver the intervention assessed using a team objective structured clinical examination and written task. Patients participating in and those declining participation in the study will be invited to take part in interviews/focus groups to explore barriers and facilitators to recruitment and retention. Outcomes include recruitment and retention rates, intervention fidelity, OT and CP competence to deliver the intervention, experiences of delivering or receiving the intervention and factors likely to influence definitive trial delivery. Discussion Effective vocational rehabilitation interventions to enhance return to work amongst trauma patients are urgently needed because return to work is often delayed, with detrimental effects on health, financial stability, healthcare resource use and wider society. This protocol describes a feasibility study delivering a complex intervention to enhance return to work in those with at least moderate trauma. Trial registration ISRCTN: 74668529. Prospectively registered on 23 January 20

scholarly journals Standing frames for children with cerebral palsy: a mixed-methods feasibility study

2018 ◽  
Vol 22 (50) ◽  
pp. 1-232 ◽  
Author(s):  
Jane Goodwin ◽  
Jan Lecouturier ◽  
Anna Basu ◽  
Allan Colver ◽  
Sarah Crombie ◽  
...  
Keyword(s):  
Cerebral Palsy ◽  
Mixed Methods ◽  
Young People ◽  
Focus Groups ◽  
Clinical Effectiveness ◽  
Well Being ◽  
Subjective Well Being ◽  
Mineral Density ◽  
Irreversible Damage ◽  
Patient Reported

Background Standing frames are recommended as part of postural management for young people with cerebral palsy (CP) Gross Motor Function Classification System (GMFCS) level IV or V. They may have a variety of benefits, including improving bone mineral density, gastrointestinal function and social participation. The NHS needs to know if these benefits are real, given the cost implications of use and the reported negative effects (e.g. pain). The lack of evidence for the clinical effectiveness of standing frames demonstrates the need for evaluative research. Objective(s) The aim of the study was to explore the acceptability of a future trial to determine the clinical effectiveness of standing frames. Design A sequential mixed-methods design was used. The findings of each stage informed the next stage. We conducted surveys, focus groups and in-depth interviews. Participants Professionals who work with young people who use standing frames and parents who have a child who uses a standing frame took part in a survey of current standing frame practice (n = 551), a series of focus groups (seven focus groups, 49 participants in total) and a survey of research trial acceptability and feasibility (n = 585). Twelve young people who use a standing frame were interviewed. Results Standing frames were widely used as part of postural management for young people with CP both in school and at home but more frequently in school, and particularly by young people in primary school. Achieving the prescribed use was not always possible owing to resources, environment and family factors. Participation and activity engagement were important to young people. The majority of participants believed that standing frames research is necessary. Some reported concern that stopping standing frame use for a trial would cause irreversible damage. The maximum amount of time most health professionals and parents would agree to suspend standing frame use would be 12 weeks. Limitations Owing to the nature of recruitment, we could not calculate response rates or determine non-response bias. Therefore, participants may not be representative of all standing frame users. Conclusions Although parents and professionals who engaged in the qualitative aspect of this research and stakeholders who took part in the design workshops appreciated the lack of clinical evidence, our surveys, qualitative information and PPI demonstrated that most people had strong beliefs regarding the clinical effectiveness of standing frames. However, with key stakeholder engagement and careful planning, a trial would be acceptable. Future work We recommend a carefully planned trial that includes a pilot phase. The trial should evaluate the following question: ‘does using a standing frame in school improve patient-reported outcomes of participation (primary outcome), quality of life, subjective well-being, body function and body structure (secondary outcomes) in young children (aged 4–11 years) with CP GMFCS III–V?’. Funding The National Institute for Health Research Health Technology Assessment programme.

Examining the Psychosocial Needs of Adolescents With Craniofacial Conditions: A Mixed-Methods Approach

2019 ◽  
Vol 57 (2) ◽  
pp. 177-185
Author(s):  
Eric Riklin ◽  
Dominique Calandrillo ◽  
Aileen Blitz ◽  
Dina Zuckerberg ◽  
Rachel A. Annunziato
Keyword(s):  
Social Support ◽  
Mixed Methods ◽  
Focus Groups ◽  
Medical Center ◽  
Intervention Development ◽  
Well Being ◽  
Psychosocial Needs ◽  
Post Traumatic Stress ◽  
Normal Ranges ◽  
Cutoff Scores

Objective: To determine, for intervention development, the psychosocial needs of adolescents diagnosed with a craniofacial condition who attended focus group sessions. Design: A mixed-methods design combining qualitative focus groups with quantitative measures. Setting: An outpatient clinic at a major medical center in Manhattan, New York. Participants: Fourteen adolescents, aged 14 to 18, with craniofacial conditions. Main Measures: Participants completed measures assessing a range of psychological constructs. Average scores were compared to clinical cutoff scores and normative data for adolescents. The 2 focus groups were coded using an inductive approach to assess pertinent themes. Additionally, the acceptability and feasibility of a proposed intervention was measured. Results: Adolescents with craniofacial conditions were within normal ranges for quality of life, self-esteem, and body image and they reported higher resiliency. They were above cutoff scores for perceived stress and post-traumatic stress disorder symptoms and below cutoff scores for mindfulness. When compared to normative samples, they displayed higher perceived social support, but lower coping. Based on qualitative analyses, 6 themes emerged: stress, bullying, coping, resiliency, mindfulness, and social support. Both qualitative and quantitative analyses revealed most participants were supportive of a future intervention for this population. Conclusions: The present study identified several factors associated with psychological well-being of adolescents with craniofacial diagnoses and demonstrates the importance of creating interventions to target specific psychosocial needs. Findings from this study may guide researchers in developing and refining a specific program for this population and provide information to help those with craniofacial conditions who are experiencing psychosocial challenges.

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