Cancer Self-Management app (CanSelfMan) for supporting Self-management in children with ALL and their parents: User-Centered Design Approach (Preprint)

2021 ◽  
Author(s):  
Hamed Mehdizadeh ◽  
Farkhondeh Asadi ◽  
Hassan Emami ◽  
Azim Mehrvar ◽  
Eslam Nazemi
Keyword(s):  
Side Effects ◽  
Lymphocytic Leukemia ◽  
The Self ◽  
Reliable Information ◽  
Self Management ◽  
Accurate Information ◽  
Preliminary Evaluation ◽  
User Centered Design ◽  
Management Skills ◽  
Good Opportunity

BACKGROUND Acute lymphocytic leukemia (ALL) is the most prevalent form of pediatric cancer with numerous side effects during the treatment period. Children and their families require knowledge and information about the disease in order to control and manage these side effects. The use of mHealth provides a good opportunity for this group to receive information and education without having to visit specialists and healthcare centers, thus improving their quality of life through self-management OBJECTIVE This study aimed to develop the CanSelfMan app to empower and support children with ALL and their parents. METHODS This study was conducted in collaboration with a multidisciplinary team in six stages: 1) requirement analysis, 2) conformity assessment, 3) determining the educational content, 4) app prototyping, 5) preliminary evaluation, and 6) producing the final version. RESULTS The app comprised five main modules (ALL knowledge base, self-management skills, self-assessment report, ask a question, and reminder) that provide access to reliable information about ALL and the self-management skills required for side-effect measurement, reporting, and control. The app also improves communication between this group and the healthcare providers to help promote medication adherence through a reminder function. A web-based version of the app was also developed for Oncologists and included a dashboard for monitoring the users’ symptoms and answering their questions. CONCLUSIONS The use of mHealth can facilitate access to accurate information about cancer and its management by patients and their families. Therefore, in this study, we developed a smartphone app to address the self-management needs of children with ALL and their parents/caregivers. CanSelfMan can support these groups by providing access to reliable information, symptoms management skills, and facilitate communication between child/parents and oncologists.

scholarly journals AB0894-HPR THE JOURNEY OF PATIENTS WITH RHEUMATOID ARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1470.2-1471
Author(s):  
M. Fusama ◽  
S. Oliver ◽  
H. Nakahara ◽  
Y. Van Eijk-Hustings ◽  
Y. Kuroe
Keyword(s):  
Rheumatoid Arthritis ◽  
Side Effects ◽  
Social Life ◽  
Life Story ◽  
Daily Life ◽  
Financial Burden ◽  
Psychological State ◽  
Self Management ◽  
Stable Phase ◽  
Management Skills

Background:The course of rheumatoid arthritis (RA) differs from patient to patient, and each patient has a unique story. The disease condition affects psychological and social aspects, greatly affecting the quality of life. The disease course is unpredictable, and each patient’s story can be seen as a lifelong journey, full of ups and downs. Therefore, it is crucial to know what kind of support is required during the course of their life.Objectives:The aim of this study is to examine the life story of patients with RA and clarify a common situation in their stories in order to consider what kind of support is needed.Methods:This is a qualitative study using life story interview for patients with RA in Japan. Interview included disease history, patients’ behaviors, effects on daily life, the patients’ perspectives regarding psychological considerations and useful support. Data were analyzed using content analysis. This study was approved by the ethics committee and informed consent was obtained.Results:Eight patients participated in this study. They were all females and the average age was 57 years old. As a result of the categorization, we extracted the following eight situations: (1) Emergence of symptom; patients thought joint pain would go away, however, the symptom did not improve and began to affect their daily life and work, (2) Choose a hospital to visit; pain and anxiety have continued and decided to visit a hospital, (3) Encounter with their doctors; patients expected their doctor to relieve their pain, while they were afraid of being told that they were suffering from a serious disease. (4) Diagnosis of RA; patients were shocked when diagnosed and anxious about what would happen and wondered why they had such a disease, (5) Choice of treatment; patients were afraid of the side effects. They wanted to make a decision discussing with their doctor, but they could not understand the explanation about drugs well and, therefore, followed the doctor’s opinion. (6) Change of treatment; a biological agent was often recommended. Patients were also worried about side effects and the financial burden. (7) Remission or stable phase; they felt better mentally too, however, they often felt anxiety about disease flare, side effect of drugs and financial burden, and (8) Flare and remission; patients felt shocked and disappointed when RA flared, and then, they noticed that patients with RA had alternating periods of relapse and remission and they had to live with RA.These interviews revealed repeated worsening and improvement of symptoms and many similar repeated psychological reactions such as anxiety, shock, denial, conflict, acceptance, giving up and relief. To cope with these fluctuating disease and mental conditions, patients were supported by educational and psychological assistance, timely consultations, social life help from nurses and support from their family. The patients considered a trusting relationship with their doctors is necessary. The patients had also realized through their experience the importance of enhancing their own abilities, such as decision-making, prevention of infections and self-management skills. Moreover, they noticed that it is important to have their own goals including hobbies and work.Conclusion:This study elucidated the common behaviors of patients with RA, the impact of RA on their psychological state and daily and social life, and the required support. The psychological condition and daily and social life also had a great influence on medical behavior. Therefore, psychosocial support and establishment of trust between healthcare professionals and patients are crucial. In addition, improving patients’ self-management skills including self-efficacy and empowerment is also necessary. As patients with RA often feel anxious in various situations and expect nurses’ support, nurses should listen to patients, pay attention to their concerns and anxieties, and show a solution-oriented attitude. In order for patients to feel at ease in their Patient Journey, nurses should sail with them while maintaining a patient-centered perspective.Disclosure of Interests:None declared

PLAYING WITH THE COLORS-PRE-SCHOOL CHILDREN’S SELF-DIRECTED DRAWING EXPERIANCE

2019 ◽  
Vol 2 ◽  
pp. 585
Author(s):  
Antra Randoha
Keyword(s):  
Preschool Children ◽  
The Self ◽  
Self Management ◽  
Skills Development ◽  
Drawing Process ◽  
Management Skills ◽  
Psychological Literature ◽  
Meaningful Activity ◽  
Observation Results

At the pre-scool age, playing is the main key to the child’s way to express them selfs in drawing process. In order to ensure the self-directed drawing, there is a need for the availability of diverse naterials throughout of the day, enabling the child to act and play in accordance with his intentions. In a drawing process, trying out different techniques, tools,mixing colors, trying to discover new ways of expression, observing and imitating other (children’s or adult) actions, provides the basic conditions for meaningful activity of a child. The aim of the thesis is to find out theoretically and practically the essence of self-directed drawing activity of preschool children and possibilities of the improvement of it in the pedagogical process. Materials and methods. Used the analysis of pedagogical and psychological literature on the possibilities of self-management skills development in the pedagogical process - drawing and accomplished pegogical observation. Results. The essence of self-directed drawing activity of preschool children was updated and possibilities of improvement reviewed .

scholarly journals Factors determining the self-management skills of diabetic patients

1987 ◽  
Vol 4 (2) ◽  
pp. 63-65 ◽  
Author(s):  
Pauline M Fowler ◽  
Penelope L Hoskins ◽  
S M Dunn ◽  
Thyra M Bolton ◽  
D K Yue ◽  
...  
Keyword(s):  
The Self ◽  
Self Management ◽  
Diabetic Patients ◽  
Management Skills

Patients, Caregivers, and Healthcare Professionals’ Needs When Designing the Content of a Mobile Application for the Clinical Monitoring of Patients with Chronic Obstructive Pulmonary Disease and Home Oxygen Therapy: A User-Centered Design (Preprint)

2021 ◽  
Author(s):  
Anisbed Naranjo Rojas ◽  
Guillermo Molina-Recio ◽  
Luis Angel Perula-de-torres
Keyword(s):  
Focus Groups ◽  
Mobile Application ◽  
Oxygen Therapy ◽  
Healthcare Professionals ◽  
The Self ◽  
Clinical Monitoring ◽  
Self Management ◽  
User Centered Design ◽  
Home Oxygen Therapy ◽  
User Centered

BACKGROUND Patients with chronic respiratory diseases require oxygen supply in a considerable amount to reduce their symptoms and increase their survival. The development of abilities for the self-management of chronic diseases has been shown to be essential to decrease exacerbation of symptoms. Therefore, the design and development of health mobile applications (apps) that aid in educating and training for disease self-management are cost-effective strategies. OBJECTIVE The purpose of this research was to describe the main characteristics that, according to final users, should be included in a mobile application for monitoring patients prescribed home oxygen therapy. METHODS A participative-qualitative design was used, involving direct participation of patients, caregivers, and healthcare professionals. Focus groups were conducted to identify the needs and perspectives related to the app. A card sorting method was used to determine the contents and basic architecture of the app. RESULTS By means of the focus groups, we could identify nine basic functions of the app for the clinical monitoring of patients under home oxygen therapy. For both profiles, the app structure was determined by identifying the most frequent contents among participants. CONCLUSIONS The implementation of a user-centered design allowed for the detection of the functions, contents, and basic architecture of the app by identifying healthcare professionals and patients’ needs and preferences regarding the self-management and monitoring of home oxygen prescriptions. CLINICALTRIAL Trial Registration: The study is registered in ClinicalTrials.gov: NCT04820790

Self-Management of Cancer

2017 ◽  
pp. 225-261
Author(s):  
Amy Deckert ◽  
Gerald M. Devins
Keyword(s):  
Physical Activity ◽  
Smoking Cessation ◽  
Health Behavior ◽  
Cancer Care ◽  
Essential Elements ◽  
The Self ◽  
Self Management ◽  
Future Research ◽  
Management Skills ◽  
Treatment Benefits

Cancer self-management aims to minimize the physical and psychosocial suffering that people can experience due to cancer and its treatment. The self-management of cancer is important in light of changes to the cancer-care system that rely on the affected person to administer and follow treatments (e.g., chemotherapy) and to initiate changes to lifestyle (e.g., physical activity) or health behavior (e.g., smoking cessation) to maximize treatment benefits and prevent complications or recurrence. This chapter highlights distinctions between chronic medical conditions and cancer. It describes the essential elements of self-management programs and the application of self-management skills to the problems introduced by cancer. It reviews and critiques the cancer self-management literature in relation to four categories of self-management targets and offers suggestions for future research.

Six-Month Data From a Pilot Self-Management Intervention ForAdolescents With Sickle Cell Disease

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 1675-1675 ◽  
Author(s):  
Lori E Crosby ◽  
Naomi Joffe ◽  
Karen Kalinyak ◽  
Alex Bruck ◽  
Clinton H Joiner
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Self Efficacy ◽  
The Self ◽  
Self Management ◽  
Cell Disease ◽  
Management Skills ◽  
Post Intervention ◽  
Management Behaviors

Abstract Background Tanabe and colleagues (2010) highlighted the importance of engaging patients with Sickle Cell Disease (SCD) in disease self-management activities to improve health outcomes. Specifically, they recommended interventions that address disease self-efficacy, patient-provider communication, healthy lifestyle behaviors, future planning, and advocacy. The Stanford Chronic Disease Self-Management Program (CDSMP) is a six-week, structured intervention for adults with a chronic disease that helps them develop self-management skills in all of these areas. The CDSMP has been implemented with adults with a variety of chronic diseases (e.g., arthritis, Type II diabetes), and outcome data has shown improvements in health utilization, health status and self-management behaviors for participants six-months post participation in the CDSMP (Lorig et al. 2001). There is limited data available on the effectiveness of the CDSMP for adults with SCD, particularly young adults and adolescents. As a first step in examining the effectiveness of the CDSMP in adolescents with SCD, we conducted two CDSMP intervention groups with SCD patients 16-24 years of age. Objective The objective of the study was to assess: 1) the feasibility, acceptability and utility of the CDSMP with this population, and, 2) changes in disease self-efficacy, quality of life (QOL), and self-management behaviors from pre to 6-months after participation in the CDSMP. Methods Patients were eligible if they: 1) had a diagnosis of SCD; 2) were followed by the University of Cincinnati Health Complex or Cincinnati Children’s Hospital Medical Center (CCHMC) sickle cell clinics; 3) were between the ages of 16 -24; and, 4) had no significant cognitive limitations. Participants received a letter followed by a phone call inviting them to participate in the CDSMP and were compensated at the end of each weekly session. Results Eighteen adolescents completed the CDSMP (i.e., attended four of the six sessions) and have completed their 6-month follow-up. The majority of patients were female (56%) and had Hb SS (SS 67%; SC 28%; Sβ+Thal 5%); the mean age for participants was 19.06 (SD = 2.44). Acceptability data indicated that sessions 2 and 6 (physical activity and exercise, managing difficult emotions, working with your healthcare provider, and planning for the future) were the most beneficial. Overall participant satisfaction with the CDSMP was high, M=8.88 (SD=1.67) on a scale of 1-10 (10=totally satisfied). Qualitative comments suggest that the participants enjoyed interacting with other patients and learning skills to help manage their illness. Repeated measures ANOVAs were used to examine the QOL and disease self-efficacy data. There was not a significant improvement on PedsQL total scores over time. Patient-reported disease self-efficacy scores showed a positive trend (F(1.572, 9.432) = 3.442, P = .083). Participants reported continuing to use a number of the self-management skills/strategies they learned during the intervention such as better breathing (86.7%), problem solving (73.3%), and action planning (66.7%). Discussion Initial Results from this small pilot suggest that the CDSMP may have some promising benefits as an intervention for adolescents and young adults with SCD given its feasibility, acceptability, and potential impact on disease self-efficacy and utilization of skills learned. In addition to participants being satisfied with the content, structure, and opportunity to interact with other participants, they also reported that they continued to use the self-management skills that they had developed. Disease self-efficacy also trended upwards for participants over the course of the intervention. Although improvements in quality of life were not observed at six-months post-intervention, the small sample size likely had an impact. The next steps will be to examine these outcomes for the duration of the post-intervention period (i.e., nine and twelve-month follow-ups) to determine whether the improvements in disease self-efficacy are maintained and whether we see quality of life improving once analyses are completed with a more complete sample size. Disclosures: No relevant conflicts of interest to declare.

scholarly journals The Mediating Role of Stress on the Effect of Self-Control and Self-Management on Level of Hope in Coaches

2019 ◽  
Vol 8 (2) ◽  
pp. 279
Author(s):  
Serdar Sucan
Keyword(s):  
Perceived Stress ◽  
The Self ◽  
Self Control ◽  
Self Management ◽  
Management Skills ◽  
Self Assessment ◽  
Self Evaluation ◽  
Mediating Role ◽  
Research Population

The aim of this study was to the role of stress on the effect of self-control and self-management on hope level in coaches. The research population consisted of 196 (80 females, 116 males) physical education teachers working in schools in Kayseri. Participants were administered the Self-Control and Self-Management Scale (SCMS), Perceived Stress Scale (PSS-10) and Adult Hope Scale (AHS). As a result of the correlation analysis, there was a positive and significant relationship between the self-control and self-management skills and level of hope scores of the coaches (p<0.01). In addition, there was a high and negative correlation between self-control and self-management skills and perceived stress scores of coaches (p<0.01). As a result of the regression analysis, the level of hope of the coaches on self-control and self-evaluation; on the level of self-control and self-assessment of coaches; The perceived stress of the coaches was a significant predictor of the level of hope (p<0.01). In conclusion, this study showed that perceived stress directly affects self-control and self-management.

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