Design and development of myFAMI application framework: a mHealth self-management intervention for family members of pediatric transplant recipients (Preprint)

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, ( myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.

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Self-management Determinants in Kidney Transplant Recipients according to the Health Belief Model

The Journal of Tolooebehdasht ◽

10.18502/tbj.v18i4.1858 ◽

2019 ◽

Author(s):

Farahnaz Farnia ◽

Mehdi Shafiezadeh ◽

Mostafa Javadi

Keyword(s):

Health Belief Model ◽

Kidney Transplant ◽

Qualitative Content Analysis ◽

Family Members ◽

Health Belief ◽

Self Management ◽

Transplant Recipients ◽

Kidney Transplant Recipients ◽

Belief Model ◽

The Health Belief Model

Introduction: Kidney transplant recipients, as chronic patients, need lifelong self-management. Therefore, identification of the effective factors is helpful in strengthening the individuals' adherence and planning self-management in the post-transplant period. However, the empirical research on this area is limited. The purpose of this study was "Explaining self-management determinants in kidney transplant recipients according to the health belief model". Methods: This qualitative content analysis was conducted in Kohgiluyeh and Boyer Ahmad province. The participants were included in the study by purposive and theoretical sampling methods until theoretical and classical saturations were achieved. The data were collected and analysed using 24 semi-structured interviews by 19 participants (14 transplant recipients, 4 family members, and a patient with a history of transplant rejection). The MAXQDA10 software was used to organize and manage the data. Results. After analysing the data, 264 primary conceptual codes were extracted. The findings were reported in 20 sub- categories and in accordance with six categories of the health belief model (perceived susceptibility, perceived severity, perceived benefits, perceived barriers, self-efficacy, and cues to actions). Conclusion. The findings of this qualitative study provided a profound understanding over the experiences of kidney transplant recipients and their family members about self-management determinants. The findings confirmed the health belief model constructs and its application in predicting these patients' self-management. In addition, the findings can be a guide for health planners and policy makers to select the suitable interventions and strategies to improve the adherence to recipients' self-management.

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An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study (Preprint)

10.2196/preprints.32785 ◽

2021 ◽

Author(s):

Riddhiman Adib ◽

Dipranjan Das ◽

Sheikh Iqbal Ahamed ◽

Stacee Marie Lerret

Keyword(s):

Family Members ◽

Self Management ◽

Smartphone App ◽

Solid Organ ◽

Care Providers ◽

Management Intervention ◽

Transplant Patients ◽

Web App ◽

Survey Responses ◽

The Web

BACKGROUND Solid-organ transplantation is the treatment of choice for children with end-stage organ failure. Ongoing recovery and medical management at home after transplant are important for recovery and transition to daily life. Smartphones are widely used and hold the potential for aiding in the establishment of mobile health (mHealth) protocols. Health care providers, nurses, and computer scientists collaboratively designed and developed mHealth family self-management intervention (myFAMI), a smartphone-based intervention app to promote a family self-management intervention for pediatric transplant patients’ families. OBJECTIVE This paper presents outcomes of the design stages and development actions of the myFAMI app framework, along with key challenges, limitations, and strengths. METHODS The myFAMI app framework is built upon a theory-based intervention for pediatric transplant patients, with aid from the action research (AR) methodology. Based on initially defined design motivation, the team of researchers collaboratively explored 4 research stages (research discussions, feedback and motivations, alpha testing, and deployment and release improvements) and developed features required for successful inauguration of the app in the real-world setting. RESULTS Deriving from app users and their functionalities, the myFAMI app framework is built with 2 primary components: the web app (for nurses’ and superadmin usage) and the smartphone app (for participant/family member usage). The web app stores survey responses and triggers alerts to nurses, when required, based on the family members’ response. The smartphone app presents the notifications sent from the server to the participants and captures survey responses. Both the web app and the smartphone app were built upon industry-standard software development frameworks and demonstrate great performance when deployed and used by study participants. CONCLUSIONS The paper summarizes a successful and efficient mHealth app-building process using a theory-based intervention in nursing and the AR methodology in computer science. Focusing on factors to improve efficiency enabled easy navigation of the app and collection of data. This work lays the foundation for researchers to carefully integrate necessary information (from the literature or experienced clinicians) to provide a robust and efficient solution and evaluate the acceptability, utility, and usability for similar studies in the future. INTERNATIONAL REGISTERED REPORT RR2-10.1002/nur.22010

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Development of a self-management intervention for stroke survivors with aphasia using co-production and behaviour change theory: An outline of methods and processes

PLoS ONE ◽

10.1371/journal.pone.0259103 ◽

2021 ◽

Vol 16 (11) ◽

pp. e0259103

Author(s):

Faye Wray ◽

David Clarke ◽

Madeline Cruice ◽

Anne Forster

Keyword(s):

Behaviour Change ◽

Research Team ◽

Development Process ◽

Family Members ◽

Change Theory ◽

Intervention Development ◽

Self Management ◽

Stroke Survivors ◽

Management Intervention ◽

Behaviour Change Theory

Background Self-management is a promising approach to improve quality of life after stroke. However, evidence for the appropriateness and effectiveness of self-management for stroke survivors with aphasia is limited. This article reports on the process used to develop a supported self-management intervention for stroke survivors with aphasia (SSWA) using co-production and behaviour change theory. Preparatory research included systematic reviews, and qualitative interviews and focus groups with SSWA, family members and speech and language therapists (SLTs). Materials and methods We conducted six, 2 hour long intervention development workshops with key stakeholders. The workshops were informed by principles of co-production and the intervention development process outlined by the Behaviour Change Wheel (BCW). We also incorporated the findings of our preparatory research within workshops. Each workshop included an introduction, 1–2 co-production tasks and time for feedback at the end of the session. Data were analysed on an ongoing basis so that findings could be used to feed in to subsequent workshops and intervention development. Results Workshop participants (n = 12) included; SSWA (n = 5), family members (n = 3) and SLTs (n = 4). Together, participants engaged with accessible and participatory co-production tasks which aligned with the BCW framework. Participants engaged in discussion to define self-management in behavioural terms (behavioural diagnosis) and to identify what needed to change to support self-management. Participant’s co-produced solutions for supporting self-management and discussed options to implement these in practice. Prototype materials were generated by the research team and evaluated by participants. Intervention functions and behaviour change techniques (BCTs) were mapped to the solutions generated by participants by the research team, after the final workshop. A supported self-management intervention for SSWA was developed which will be delivered by SLTs through community stroke services. Conclusions This paper reports the process we used to integrate co-production work with behaviour change theory to develop a complex self-management intervention. This is of relevance for researchers looking to harness the strengths of co-production methods and theory in intervention design. Future research will feasibility test the supported self-management intervention developed. This paper provides transparency to our intervention development process which will help others to better interpret the findings of our feasibility work.

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A Randomized Trial of Self-Management Intervention for Chronic Fatigue Syndrome in Primary Care

PsycEXTRA Dataset ◽

10.1037/e656742011-001 ◽

2011 ◽

Author(s):

Fred Friedberg

Keyword(s):

Primary Care ◽

Chronic Fatigue Syndrome ◽

Randomized Trial ◽

Chronic Fatigue ◽

Self Management ◽

Management Intervention ◽

Fatigue Syndrome

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The SEA CHANGE Study: A Self Management Intervention for Head and Neck Cancer Survivors

Case Medical Research ◽

10.31525/ct1-nct04051697 ◽

2019 ◽

Author(s):

Keyword(s):

Head And Neck Cancer ◽

Cancer Survivors ◽

Head And Neck ◽

Neck Cancer ◽

Self Management ◽

Management Intervention

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Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families

Translational Behavioral Medicine ◽

10.1093/tbm/ibaa132 ◽

2021 ◽

Author(s):

Shannon Phillips ◽

Julie Kanter ◽

Martina Mueller ◽

Amy Gulledge ◽

Kenneth Ruggiero ◽

...

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Rating Scale ◽

Management Strategies ◽

Self Management ◽

Cell Disease ◽

Vessel Occlusion ◽

Feasibility Assessment ◽

Management Intervention ◽

Scale Scores

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.

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TEXT4myBACK – The development process of a self-management intervention delivered via text message for low back pain

Archives of Rehabilitation Research and Clinical Translation ◽

10.1016/j.arrct.2021.100128 ◽

2021 ◽

pp. 100128

Author(s):

Carolina G. Fritsch ◽

Paulo H. Ferreira ◽

Joanna L Prior ◽

Giovana Vesentini ◽

Patricia Schlotfeldt ◽

...

Keyword(s):

Low Back Pain ◽

Back Pain ◽

Development Process ◽

Text Message ◽

Self Management ◽

Low Back ◽

Management Intervention

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The effectiveness of nurse-led self-management support program for people with chronic kidney disease stage 3-4 (CKD-NLSM): Study protocol for a randomized controlled trial

Science Progress ◽

10.1177/00368504211026159 ◽

2021 ◽

Vol 104 (2) ◽

pp. 003685042110261

Author(s):

Al Sawad Ayat Ali ◽

Soo Kun Lim ◽

Li Yoong Tang ◽

Aneesa Abdul Rashid ◽

Boon-How Chew

Keyword(s):

Kidney Disease ◽

Controlled Trial ◽

Self Management ◽

Control Group ◽

Management Support ◽

Disease Knowledge ◽

Management Intervention ◽

Randomized Controlled ◽

Ckd Stage ◽

Management Behaviors

The complexity of chronic kidney disease (CKD) and its treatments have made self-management behaviors inevitably challenging. However, supplementing education with self-management skills may improve numerous health outcomes in people with nondialysis CKD. This study protocol describes a randomized controlled trial (RCT) aimed to evaluate the effects of a nurse-led self-management support program as an intervention for kidney disease knowledge and CKD self-management behaviors among people with pre-dialysis CKD. In Phase 1, people with CKD stage 3–4 and their family members are involved in co-designing, development and pilot testing of a theory-based self-management intervention. In Phase 2, we perform a cross-cultural adaptation of the Kidney Disease Knowledge Survey, CKD Self-Management and Self-efficacy for Managing Chronic Disease questionnaires. In Phase 3, a parallel RCT will be conducted to evaluate the intervention where 154 participants with CKD stage 3–4 will be randomly assigned to either the intervention ( n = 77) or control group ( n = 77). The intervention group will receive 6-week self-management program from a nurse-coach in addition to standard usual care, while the control group will receive only standard usual care. Outcome measures include kidney disease knowledge, CKD self-management behavior, self-efficacy, quality of life, blood pressure control and adherence to CKD diet as indicated by 24-h urine urea nitrogen, 24-h urine sodium and net endogenous acid production. Data will be collected at baseline and 12-week post-baseline. The between- and within-group intervention effects will be estimated using the Generalized Estimating Equations. The self-management intervention offers strategies to delay CKD progression and to encourage motivation to better self-manage at home. This study integrates self-management education and psychosocial support with culturally relevant scenarios, and evaluates important self-reported and objective outcomes. Clinical Trials Registration: www.ClinicalTrials.gov , identifier: NCT03974646.

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