Expectations of an Online-Self-Management Program for Rheumatoid Arthritis

2021 ◽  
pp. 105477382110416
Author(s):  
Su-Hui Chen ◽  
Kuang-Hui Yu ◽  
Yi-Hui Lee ◽  
Jung-Hua Shao
Keyword(s):  
Rheumatoid Arthritis ◽  
Healthcare Providers ◽  
Management Program ◽  
Ease Of Use ◽  
Self Management ◽  
Structured Interviews ◽  
Future Health ◽  
Self Monitoring ◽  
Disease Trajectory ◽  
The Individual

This qualitative descriptive study aimed to explore expectations of patients and healthcare experts for an online self-management program for rheumatoid arthritis. Participants were recruited from rheumatology clinics, medical centers, and universities in Taiwan. Individual face-to-face, semi-structured interviews were conducted with patients ( n = 16) and healthcare experts ( n = 7). Content analysis of the interview data resulted in five subthemes for expectations of an online self-management program: information about how the disease trajectory would impact future health status, availability of opportunities for self-monitoring, opportunities to interact with fellow patients and healthcare providers, simplicity and ease-of-use of the program, and methods to facilitate patient-motivation. These subthemes formulated two overarching themes: content and format. An online self-management program for patients with rheumatoid arthritis should provide evidence-based information about disease variables and behaviors aligned with the specific needs of the individual and adopt strategies that encourage and increase motivation and confidence.

scholarly journals “It’s Just Always Eating”: The Experiences of Young People Growing up Medium Chain Acyl-coA Dehydrogenase Deficiency

2021 ◽  
Vol 8 ◽  
pp. 233339362110322
Author(s):  
Hilary Piercy ◽  
Charlotte Nutting ◽  
Sufin Yap
Keyword(s):  
Metabolic Disorder ◽  
Dehydrogenase Deficiency ◽  
Healthcare Providers ◽  
Self Management ◽  
Growing Up ◽  
Structured Interviews ◽  
Self Monitoring ◽  
Screening Programs ◽  
Medium Chain ◽  
Chain Acyl

Medium chain acyl-CoA dehydrogenase deficiency (MCADD) is a rare metabolic disorder, and commonly now part of newborn screening programs. Those diagnosed at birth are now progressing from childhood to adulthood. The study aim was to explore young people’s experiences of living with MCADD and managing their condition. A descriptive qualitative study design involving semi-structured interviews with 12 participants aged 10 to 15 years, recruited from one regional pediatric metabolic disorder service in England. Data were analyzed using thematic analysis. The two major themes were “Eating for energy” and “Growing into a self-management role.” Self-monitoring and self-management skills had been nurtured from early childhood by parents and healthcare providers. Young people’s anxieties concerned having to maintain adequate energy input to stay safe and the associated burden of responsibility. Growing up with MCADD presents specific challenges. Self-management and ongoing support are important for dealing with those challenges.

scholarly journals Exploring the potential for introducing home monitoring of blood pressure during pregnancy into maternity care: current views and experiences of staff—a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (12) ◽  
pp. e037874
Author(s):  
Lisa Hinton ◽  
James Hodgkinson ◽  
Katherine L Tucker ◽  
Linda Rozmovits ◽  
Lucy Chappell ◽  
...  
Keyword(s):  
Blood Pressure ◽  
Maternity Care ◽  
Healthcare Providers ◽  
Home Monitoring ◽  
Structured Interviews ◽  
Group Discussions ◽  
Self Monitoring ◽  
Team Members ◽  
Registration Number ◽  
In Pregnancy

ObjectiveOne in 20 women are affected by pre-eclampsia, a major cause of maternal and perinatal morbidity, death and premature birth worldwide. Diagnosis is made from monitoring blood pressure (BP) and urine and symptoms at antenatal visits after 20 weeks of pregnancy. There are no randomised data from contemporary trials to guide the efficacy of self-monitoring of BP (SMBP) in pregnancy. We explored the perspectives of maternity staff to understand the context and health system challenges to introducing and implementing SMBP in maternity care, ahead of undertaking a trial.DesignExploratory study using a qualitative approach.SettingEight hospitals, English National Health Service.ParticipantsObstetricians, community and hospital midwives, pharmacists, trainee doctors (n=147).MethodsSemi-structured interviews with site research team members and clinicians, interviews and focus group discussions. Rapid content and thematic analysis undertaken.ResultsThe main themes to emerge around SMBP include (1) different BP changes in pregnancy, (2) reliability and accuracy of BP monitoring, (3) anticipated impact of SMBP on women, (4) anticipated impact of SMBP on the antenatal care system, (5) caution, uncertainty and evidence, (6) concerns over action/inaction and patient safety.ConclusionsThe potential impact of SMBP on maternity services is profound although nuanced. While introducing SMBP does not reduce the responsibility clinicians have for women’s health, it may enhance the responsibilities and agency of pregnant women, and introduces a new set of relationships into maternity care. This is a new space for reconfiguration of roles, mutual expectations and the relationships between and responsibilities of healthcare providers and women.Trial registration numberNCT03334149.

scholarly journals Prostate Cancer Survivors’ and Caregivers’ Experiences Using Behavior Change Techniques during a Web-Based Self-Management and Physical Activity Program: A Qualitative Study

2020 ◽  
Vol 9 (10) ◽  
pp. 3244
Author(s):  
Laura Hallward ◽  
Keryn Chemtob ◽  
Sylvie D. Lambert ◽  
Lindsay R. Duncan
Keyword(s):  
Physical Activity ◽  
Prostate Cancer ◽  
Qualitative Study ◽  
Behavior Change ◽  
Management Program ◽  
Self Management ◽  
Positive Outcomes ◽  
Structured Interviews ◽  
Behavior Change Techniques ◽  
Web Based

Both men with prostate cancer and their caregivers report experiencing a number of challenges and health consequences, and require programs to help support the cancer patient–caregiver dyad. A tailored, web-based, psychosocial and physical activity self-management program (TEMPO), which implements behavior change techniques to help facilitate behavior change for the dyads was created and its acceptability was tested in a qualitative study. The purpose of this secondary analysis was to explore the dyads’ experiences using behavior change techniques to change behavior and address current needs and challenges while enrolled in TEMPO. Multiple semi-structured interviews were conducted with 19 prostate cancer-caregiver dyads over the course of the program, resulting in 46 transcripts that were analyzed using an inductive thematic analysis. Results revealed four main themes: (1) learning new behavior change techniques, (2) engaging with behavior change techniques learned in the past, (3) resisting full engagement with behavior change techniques, and (4) experiencing positive outcomes from using behavior change techniques. The dyads’ discussions of encountering behavior change techniques provided unique insight into the process of learning and implementing behavior change techniques through a web-based self-management program, and the positive outcomes that resulted from behavior changes.

Participant Perspectives on Benefits and Challenges of Engaging in an Online Pain Self-Management Program

2020 ◽  
pp. 146-167
Author(s):  
Marian Wilson ◽  
Michele R. Shaw
Keyword(s):  
Health Care Providers ◽  
Controlled Trial ◽  
Management Program ◽  
Ease Of Use ◽  
Self Management ◽  
Care Providers ◽  
Online Programs ◽  
Positive Reframing ◽  
Qualitative Descriptive ◽  
Participant Perspectives

The purpose of this study was to evaluate participants' perspectives after engaging in an 8-week online pain self-management program. Unexplored qualitative data for this analysis were collected via secure online surveys distributed during a previously published randomized controlled trial. Participants for the present study were 47 adults prescribed opioid medicines for chronic pain. A qualitative descriptive approach using content analysis methods was used to identify common themes regarding online participation. Three themes described the benefits of the program and included: positive reframing, improved accountability, and feeling supported. Two themes described how participants would like to improve the program experience and included: ease of use and desire for personalizing. Participants' insights can assist health care providers and program developers in understanding how online programs may improve chronic disease self-management for a multitude of health problems.

Experiences of Participants Who Then Become Coaches in a Peer Coach Diabetes Self-Management Program: Lessons for Future Programs

2021 ◽  
pp. 174239532110642
Author(s):  
Kirin Saint ◽  
Michele Heisler
Keyword(s):  
Iterative Process ◽  
Peer Coaching ◽  
Management Program ◽  
Support Programs ◽  
Self Management ◽  
Structured Interviews ◽  
Shared Experiences ◽  
Management Coaching ◽  
Peer Coach ◽  
Insight Into

Objectives Peer support programs are effective in improving outcomes among low-resource populations. Prior studies suggest that shared experiences improve peer partnerships. We hypothesized that participants in a peer coaching program who then became coaches might bring insight into their coaching role. We explored the motivations of coaches in a diabetes self-management coaching program who became coaches after completing the program as participants. Methods Between June 2016 and April 2017 we conducted semi-structured interviews with eight participants-turned-coaches and four of their peer partners in a six-month peer coaching program for patients with poor glycemic control at the Detroit VA. The interviews were transcribed, reviewed and coded by two researchers in an iterative process until consensus was reached. Key themes were identified and analyzed. Results Participants-turned-coaches reported the importance of their own peer coach in their decision to become a coach. Participants-turned-coaches described commitment to their partners, providing realistic encouragement, and fostering a reciprocal partnership. Participants-turned-coaches shared their own difficulties to motivate their partners and create a sense of commonality. Discussion Encouraging participants who complete diabetes peer coach interventions to become coaches appears to be a useful strategy for developing peer coaches who bring sensitivity, commitment, and reciprocity to their role.

Research Implementing the Flinders Model of Self-management Support with Aboriginal People who have Diabetes: Findings from a Pilot Study

2008 ◽  
Vol 14 (1) ◽  
pp. 66 ◽  
Author(s):  
Malcolm W. Battersby ◽  
Jackie Ah Kit ◽  
Colleen Prideaux ◽  
Peter W. Harvey ◽  
James P. Collins ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assessment Tool ◽  
Aboriginal People ◽  
Health Workers ◽  
South Australia ◽  
Management Program ◽  
Self Management ◽  
Management Support ◽  
Structured Interviews

A pilot program for Aboriginal people with diabetes on Eyre Peninsula, South Australia, aimed to test the acceptability and impact of using the Flinders model of self-management care planing to improve patient self-management. A community development approach was used to conduct a twelve-month demonstration project. Aboriginal health workers (AHWs) conducted patient-centred, self-management assessment and care planning. Impacts were measured by patient-completed diabetes self-management assessment tool, goal achievement, quality of life and clinical measures at baseline and 12 months. Impact and acceptability were also assessed by semi-structured interviews and focus groups of AHWs. Sixty Aboriginal people with type 2 diabetes stated their main problems as family and social dysfunction, access to services, nutrition and exercise. Problems improved by 12% and goals by 26%, while quality of life scores showed no significant change. Self-management scores improved in five of six domains. Mean HbA1c reduced from 8.74-8.09 and mean blood pressure was unchanged. AHWs found the process acceptable and appropriate for them and their patients. It was concluded that a diabetes self-management program provided by AHWs is acceptable, improves self-management and is seen to be useful by Aboriginal communities. Barriers include lack of preventative health services, social problems and time pressure on staff. Enablers include community concern regarding the prevalence and mortality associated with diabetes.

scholarly journals A Qualitative Evaluation of the Acceptability of a Tailored Smartphone Alcohol Intervention for a Military Population: Information About Drinking for Ex-Serving Personnel (InDEx) App (Preprint)

2018 ◽  
Author(s):  
Jo-Anne Puddephatt ◽  
Daniel Leightley ◽  
Laura Palmer ◽  
Norman Jones ◽  
Toktam Mahmoodi ◽  
...  
Keyword(s):  
Alcohol Consumption ◽  
Text Messaging ◽  
Telephone Interview ◽  
Armed Forces ◽  
Text Messages ◽  
Ease Of Use ◽  
Smartphone App ◽  
Self Monitoring ◽  
The Individual ◽  
Sms Text Messaging

BACKGROUND Alcohol consumption in the UK Armed Forces is higher than in the general population, and this pattern continues after leaving the service. Smartphone apps may be useful to increase ex-serving personnel’s awareness of their alcohol consumption, support self-monitoring, and prompt a change in behavior. OBJECTIVE The study aimed to explore the acceptability of Information about Drinking in Ex-serving personnel (InDEx), a tailored smartphone app, combined with personalized short message service (SMS) text messaging designed to target ex-serving personnel who meet the criteria for hazardous alcohol use. METHODS The InDEx intervention included 4 key modules: (1) assessment and normative feedback, (2) self-monitoring and feedback, (3) goal setting and review, and (4) personalized SMS text messaging. A semistructured telephone interview study was conducted with ex-serving personnel after using the app for a 28-day period. Interviews were used to explore the acceptability of app modules and its functionality and the perceived changes in participant’s drinking. Interview transcripts were analyzed using inductive thematic analysis. RESULTS Overall, 94% (29/31) participants who used InDEx agreed to take part in a telephone interview. Overall, 4 themes were identified: Credibility, Meeting their needs, Simplicity, and Helpful for ex-serving personnel. The importance of credibility, functionality, and meeting the individual needs of ex-serving personnel was emphasized. Acceptability and engagement with specific modules of the app and text messages were influenced by the following: (1) if they felt it provided credible information, (2) whether the content was appropriately personalized to them, (3) the ease of use, and (4) beliefs about their own drinking behaviors. Participants recommended that the app would be most suitable for personnel about to leave the Armed Forces. CONCLUSIONS InDEx was an acceptable smartphone app for ex-serving personnel for monitoring alcohol consumption and in providing meaningful feedback to the individual. Pages that met the participant’s interests and provided real time personalized, credible feedback on their drinking and text messages tailored to participant’s interactions with the app were particularly favored.

scholarly journals Pain self-management experiences in haemophilia patients: a qualitative study

2018 ◽  
Vol 5 (1) ◽  
pp. 76-82 ◽  
Author(s):  
Masoume Rambod ◽  
Farkondeh Sharif ◽  
Zahra Molazem ◽  
Kate Khair
Keyword(s):  
Pain Relief ◽  
Qualitative Study ◽  
Lived Experience ◽  
Sense Of Self ◽  
Healthcare Providers ◽  
Phenomenological Approach ◽  
Complementary Therapy ◽  
Self Management ◽  
Self Awareness ◽  
Structured Interviews

Abstract Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.

scholarly journals (In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0248151
Author(s):  
Susie Donnelly ◽  
Anthony G. Wilson ◽  
Hasheem Mannan ◽  
Claire Dix ◽  
Laura Whitehill ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Lived Experience ◽  
Sense Of Self ◽  
Health Care Systems ◽  
Analysis Data ◽  
Situational Factors ◽  
Self Management ◽  
Management Support ◽  
Structured Interviews ◽  
Care Systems

Background Chronic illnesses, such as Rheumatoid Arthritis (RA), are a growing burden on health care systems worldwide. Self-management emphasises the patient’s central role in managing their illness. This is pertinent given the majority of care is provided by the individual themselves; yet how individuals make sense of self-management in everyday life is largely unseen. Objective The purpose of this study was to capture the strengths and concerns of individuals with RA in self-managing their illness, raise awareness of their lived experience and spark a dialogue among stakeholders. Methods A community-based participatory approach, Photovoice, was adopted. A purposive sample of participants were tasked with taking photographs to represent the challenges and solutions to living with RA. Group workshops and semi-structured interviews were conducted to facilitate reflection, dialogue and analysis. Data analysis followed Braun and Clarke’s thematic analysis. Public exhibitions were held throughout the Autumn of 2019. Results Eight women and three men (n = 11) across suburban and urban regions of Ireland were recruited (mean age 57 years, disease duration 4–21 years). Participants identified four main themes which reflected the lived experience of self-managing RA: (i) I’m Here but I’m Not, (ii) Visible Illness, (iii) Medicine in All its Forms, (iv) Mind Yourself. These themes captured the challenge of reduced agency, limited contribution and participation, and a complex relationship between visible and invisible illness. Solutions focused on improving psychological and emotional resilience, particularly through personal reflection and increased agency. Conclusions Our findings suggest that RA is experienced as a fluid relationship between states of masking and surfacing of illness shaped by contextual and situational factors. Photovoice was a highly effective tool to capture and communicate this complexity. Supporting increased agency among individuals with RA to control the (in)visibility of illness and disability can inform the development of future self-management support.

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