| BackgroundAcute Lymphoblastic Leukemia(ALL)is the most common childhood malignancy in children and the peak incidence of childhood ALL occurs among children from 2 to 4 years old.Children with ALL are too young and have limited cognitive and self-care ability.Their parents play a significant role in coordinating complex healthcare services in and out of the hospital.Caring for children with ALL is a challenging experience for the parents who lack clinical knowledge.They urgently need available education and supportive intervention.mHealth empowers chronic diseases self-management,health promotion,treatment adherence and other aspects in healthcare system.Smartphone applications(apps)are important mHealth tools and tend to be convenient,real-time,accessible,and interactively.Studies have documented the effectiveness of apps in healthcare and clinical practice.In order to meet the needs of parents of children with ALL,we have built a multidisciplinary research team with American National Children Medical Center.With the grant fund by Science and Technology Commission of Shanghai Municipality,China(Project No.12410707900),we worked collaboratively and developed an app that run on Android system.Then based on the app,how to construct an mHealth supportive care intervention for parents of children with ALL and how to evaluate its clinical effectiveness are research questions that urgently need to be solved.Objective 1.To construct an mHealth supportive care intervention for parents of children with ALL;2.To evaluate the effectiveness of this mHealth supportive care intervention for parents of children with ALL.Methods 1.Construction of mHealth supportive care intervention program for parents of children with ALL(1)Usability evaluation of the main intervention tool: smartphone app 1)Usability and its evaluation methodology: Literature were searched and reviewed to analysis the concept of usability and its development,usability attributes,usability evaluation and evaluation tools.2)Scoping review of usability evaluation for cancer related mHealth app: Following the Arksey and O’Malley framework,the scoping review conducted with 5 steps: identification of the research question,identifying relevant studies,study selection,charting the data,collating,summarizing and reporting the results.Studieson usability evaluation of cancer related mHealth app from Jan.2000 to Dec.2013 were searched and analyzed.3)Usability evaluation of the app: A stepwise approach and mixed methods study on usability evaluation of our app were conducted.The app was initially tested by healthcare providers,and then by parents of children with ALL.Audit log data from the administration portal was collected to understand how parents use the app.Qualitative and quantitative data were analyzed in the usability evaluation.(2)Construction of mHealth supportive care intervention program for parents of children with ALL 1)Scoping review of app based mHealth intervention for cancer: Following the Arksey and O’Malley framework,the scoping review conducted with 5 steps,studies on app based mHealth intervention for cancer from Jan.2000 to Dec.2014 were searched and analyzed.2)Construction of mHealth supportive care intervention program for parents of children with ALL: Based on the literature review results,the usability evaluation results and this study’s target participants’ characteristics,the draft intervention program was constructed.3)Optimization of mHealth supportive care intervention program for parents of children with ALL: A discussion with healthcare specialists was held to optimize the draft intervention program.Then the draft intervention program was revised according to healthcare specialists’ suggestion and comments.2.Effectiveness evaluation of mHealth supportive care intervention program for parents of children with ALLTo avoid contamination between observation group and intervention group,parents in the observation group were firstly recruited from Shanghai Children’s Medical Center and Soochow University Affiliated Children’s Hospital.The baseline information of parents in observation group was collected when they were recruited.Three months later,they were asked to answer the same questionnaires as the baseline.After all data of parents in the observation group were collected,parents in the intervention group were recruited from the same two hospitals.The baseline information was collected when they were recruited.Then they received the mHealth supportive care intervention.Three months later,data were collected again in the intervention group.Quantitative data from both groups including parents’ social support,anxiety,depression,caregiver burden,uncertainty in illness,quality of life,the current knowledge of ALL and care for children,the need of knowledge of ALL and care for children were collected and analyzed.Qualitative data about parents’ perception of receiving this intervention were collected from the intervention group.Results 1.Construction of mHealth supportive care intervention program for parents of children with ALL(1)Usability evaluation of the main intervention tool: smartphone app 1)Usability and its evaluation methodology review: The concept of usability and its development,usability attributes,usability evaluation and evaluation tools were reviewed and analyzed.2)Scoping review of usability evaluation for cancer related mHealth app: Totally 7178 studies were identified in the database search and finally 10 studies with full text and 6 conference abstracts without full text were included in this review.The publication year was from 2007 to 2013.Types of cancer the apps focused on,study design,participants,duration of usability evaluation,research tools being used in usability evaluation,and attributes of usability evaluated were reviewed.3)Usability evaluation of the app: No software failure occurred during the usability evaluation.All participants completed the whole usability evaluation process.Healthcare providers and parents felt that this app was with understandability,learnability,usability,effectiveness,and satisfaction.Parents were willing to go on using the app in further caring for children.This app has the potential to support parents of children with ALL to provide good quality of care.(2)Construction of mHealth supportive care intervention program for parents of children with ALL 1)Scoping review of app based mHealth intervention for cancer: Totally 8088 studies were identified in the database search and finally 5 studies were reviewed,including 3 study proposals.The publication year was from 2009 to 2014.The included studies were analyzed from the app being used,study design,participants,study methods,duration of intervention,outcomes evaluation,results and conclusion.2)Construction of mHealth supportive care intervention program for parents of children with ALL: The draft intervention program included the instruction of app,intervention procedure,the management of backstage group,and effectiveness evaluation system.3)Optimization of mHealth supportive care intervention program for parents of children with ALL: The intervention program was revised according to suggestion and comments from healthcare specialists.The final version of intervention program included: intervention with the app and We Chat public platform,the instruction of app,the management of backstage group,and effectiveness evaluation system.2.Effectiveness evaluation of the mHealth supportive care intervention program for parents of children with ALLFifty parents were recruited for the observation group in Shanghai Children’s Medical Center and Soochow University Affiliated Children’s Hospital in June 2015.Three months later,43 parents completed the second time of data collection.Then 51 parents were recruited for the intervention group.Totally,49 parents have completed this 3-month intervention.The data comparison results indicated that this mHealth supportive care intervention reduced parents’ anxiety(P=0.030)and uncertainty in illness(P=0.007),improved parents’ social function(P=0.014),increased parents’ knowledge of ALL and care for children(P=0.000),decreased parents’ need of knowledge of ALL and care for children(P=0.000).Qualitative results showed that parents in intervention group were satisfied with our mHealth supportive care intervention and their caregiving for children with ALL.Conclusion 1.Scoping reviews of usability evaluation for cancer related mHealth app and app based mHealth intervention for cancer indicated that this study is with innovation.The results of literature reviews are also necessary basement of the construction of mHealth supportive care intervention program.Moreover,the literature reviews will contribute to other mHealth studies.2.The app is with good usability.It is understandable,learnable,usable,effective,and satisfied.This app can be used to provide support for parents of children with ALL.It has the potential to help parents to give their children good quality of care.3.This study constructed an mHealth supportive care intervention program for parents of children with ALL,and proved the intervention’s effectiveness in reducing parents’ anxiety and uncertainty in illness,improving social function,increasing parents’ knowledge of ALL and care for children,and decreased parents’ need of knowledge of ALL and care for children.Parents were satisfied with this intervention.This study will guide other studies on providing supportive care for parents of children with cancer by mHealth intervention. |
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