Dataset Information

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

ABSTRACT: BACKGROUND:Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. OBJECTIVE:To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. METHODS:Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. RESULTS:Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint-5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is "dry" and "boring," could be "scary," and was either hard to understand or not relevant to individuals' circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a "normal" life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a "normal" life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. CONCLUSIONS:Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes.

SUBMITTER: Nightingale R

PROVIDER: S-EPMC5516103 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

Nightingale Ruth R Hall Andrew A Gelder Carole C Friedl Simone S Brennan Eileen E Swallow Veronica V

Journal of medical Internet research 20170704 7

<h4>Background</h4>Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care managem ...[more]

PMID: 28676470

Similar Datasets

Project description:IntroductionApproximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.MethodsThrough a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns.ResultsTen people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs.ConclusionDespite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.Patient or public contributionThis work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Project description:BackgroundThe postnatal period poses numerous challenges for new parents. Various educational programs are available to support new parents during this stressful period. However, the usefulness of educational programs must be evaluated to ascertain their credibility.ObjectiveThe aim of this descriptive, qualitative study was to explore the views of parents of newborns with regard to the content and delivery of a mobile health (mHealth) app-based postnatal educational program.MethodsA qualitative semistructured interview guide was used to collect data from 17 participants who belonged to the intervention group of a randomized controlled trial. The intervention, a 4-week-long access to a mHealth app-based educational program, was evaluated. The interviews were conducted in English and at the participants' homes. Thematic analysis was used to analyze the data. The Consolidated Criteria for Reporting Qualitative Research checklist was used to report the findings.ResultsThe interviews revealed 4 main themes: (1) positive features of the mHealth app, (2) advice from midwives, (3) experiences gained from using the mHealth app, and (4) recommendations for the future. The participants evaluated the educational program to be a good source of information that was tailored to the local context. The different modes of delivery, including audio and video, accentuated the accessibility of information. The parents evaluated that the facilitator of the featured communication platform, a midwife, provided trustworthy advice. Belongingness to a virtual community beyond the hospital endowed the parents the confidence that they were not alone and were supported by other parents and health care professionals.ConclusionsAccording to the parents, the mHealth app-based educational program was helpful in supporting a multi-ethnic sample of parents during the postnatal period. This insight indicates that the program could be implemented in a wide community of parents in the postnatal period. The helpfulness of the educational program is a testament of the potential benefits of using telemedicine among new parents postnatally. Resources can also be dedicated toward extending the duration of access to the app beyond 1 month and developing relevant content for parents across the perinatal period.

Project description:BACKGROUND:Plantar heel pain is a common source of pain and disability. Evidence-based treatment decisions for people with plantar heel pain should be guided by the best available evidence, expert clinical reasoning, and consider the needs of the patient. Education is a key component of care for any patient and needs to be tailored to the patient and their condition. However, no previous work has identified, far less evaluated, the approaches and content required for optimal education for people with plantar heel pain. The aim of this study was to gather the patients' perspective regarding their lived experience, attitudes and educational needs in order to inform the content and provision of meaningful education delivery approaches. METHODS:Using a qualitative descriptive design, semi-structured interviews were conducted with participants with a clinical diagnosis of plantar heel pain. A topic guide was utilised that focused on the experience of living with plantar heel pain and attitudes regarding treatment and educational needs. Interviews were audio recorded, transcribed verbatim and analysed using the Framework approach. Each transcription, and the initial findings, were reported back to participants to invite respondent validation. RESULTS:Eighteen people with plantar heel pain were interviewed. Descriptive analysis revealed eight themes including perceptions of plantar heel pain, impact on self, dealing with plantar heel pain, source of information, patient needs, patient unmet needs, advice to others and interest in online education. Participants revealed doubt about the cause, treatment and prognosis of plantar heel pain. They also expressed a desire to have their pain eliminated and education individually tailored to their condition and needs. Respondent validation revealed that the transcripts were accurate, and participants were able to recognise their own experiences in the synthesised themes. CONCLUSION:Plantar heel pain has a negative impact on health-related quality of life. Participants wanted their pain eliminated and reported that their expectations and needs were frequently unmet. Health professionals have an important role to be responsive to the needs of the patient to improve their knowledge and influence pain and behaviour. Our study informs the content needed to help educate people with plantar heel pain.

Project description:BackgroundThe period surrounding childbirth is one of profound change, which can often be experienced as stressful and overwhelming. Indeed, around 20% of women may experience significant levels of anxiety in the perinatal period. However, most women experiencing perinatal anxiety (PNA) go unrecognised and untreated. The Internet offers a potentially scalable solution to improve access to support, however a dearth of research in this area means that work is needed to better understand women's experience of PNA, so that potential targets for intervention can be identified and possible barriers to support overcome. This study aimed to qualitatively explore women's experience of anxiety triggers and support in the perinatal period; and gain insight into what online support is acceptable for women with PNA.MethodsWomen who were either pregnant or within one-year postpartum were invited to participate in focus groups across the UK. Focus groups were used to allow a diversity of perspectives to be heard, while simultaneously promoting the identification and prioritisation of important support needs and solutions. Interviews were transcribed and thematically analysed.ResultsFive key themes emerged in relation to women's experience with PNA: holding unrealistic expectations of birth and motherhood; stigma; the importance of peer support; uncertainty and poor maternal confidence; and a lack of mental health support and knowledge. Perinatal women felt under-supported and poorly prepared for motherhood. A mismatch between their expectations and the reality of their experience, alongside a pressure to be the 'perfect mum' was the primary source of their anxiety. Furthermore, stigma associated with PNA may have exacerbated these issues and led to help-seeking avoidance. Overall, women felt these issues could be addressed via online support, through the delivery of more realistic information, providing psychoeducation about PNA symptoms and management, and the inclusion of authentic peer experiences. Thus, delivering evidence-based information and interventions online may provide a solution that is acceptable to this cohort.ConclusionsThis work provides unique insight into potential sources of anxiety for women in the perinatal period, while also offering potential internet-based support solutions that are likely to be acceptable and helpful for women with PNA.

Project description:BACKGROUND:Maternity Waiting Homes (MWHs) have been advocated to improve the utilization of skilled birth attendants. Nevertheless, delivery attended by skilled personnel is low in Ethiopia and may indicate that the utilization of MWH is also low. The aim of this study is to explore the factors influencing women's access to the MWHs in rural Southwest Ethiopia. METHODS:Qualitative data were collected through focus group discussions with MWHs users and in-depth interviews with MWHs non-users, health extension workers and the clinicians. Four focus group discussions and 18 in-depth interviews were conducted between May 1 and June 1, 2017. Furthermore, observations were made to assess the availability of basic facilities at selected MWHs. Data were thematically analyzed using NVivo version 7. The concept of access defined by Thiede et al was applied to guide the analysis. RESULTS:Women had interest on MWHs and are aware of the existence of MWHs in their immediate vicinity. Health information disseminations and referral linkages by frontline health workers enabled women to timely access the MWHs. However, Women didn't understand the aims and benefits of MWHs. At the facility level, there were attempts to improve the acceptability of MWHs by allowing women to choose their delivery positions. But, participants claimed lack of privacy and presence of disrespectful care. Physical barriers (long distance, unavailability of transport options & unfavorable roads) were considered as potential problems for women residing in remote areas. MWH users mentioned absences of sufficient basic facilities, poor quality and varieties of food. Because of insufficient facilities, the cost of living was high for most users. The communities try to overcome the indirect costs through contributions in-kind and in-cash. CONCLUSIONS:The factors influencing women's access to the MWHs were structural and individual and resonate with Thiede et al. dimensions of access. A better understanding of which factors are most influential in preventing women's access to the MWHs in rural Southwest Ethiopia is needed to appropriately target interventions.

Project description:Ageing societies and a rising prevalence of dementia are associated with increasing demand for care home places. Monitoring technologies (e.g. bed-monitoring systems; wearable location-tracking devices) are appealing to care homes as they may enhance safety, increase resident freedom, and reduce staff burden. However, there are ethical concerns about the use of such technologies, and it is unclear how they might be implemented to deliver their full range of potential benefits.This study explored facilitators and barriers to the implementation of monitoring technologies in care homes.Embedded multiple-case study with qualitative methods.Three dementia-specialist care homes in North-West England.Purposive sample of 24 staff (including registered nurses, clinical specialists, senior managers and care workers), 9 relatives and 9 residents.36 semi-structured interviews with staff, relatives and residents; 175h of observation; resident care record review. Data collection informed by Normalization Process Theory, which seeks to account for how novel interventions become routine practice. Data analysed using Framework Analysis.Findings are presented under three main themes: 1. Reasons for using technologies: The primary reason for using monitoring technologies was to enhance safety. This often seemed to override consideration of other potential benefits (e.g. increased resident freedom) or ethical concerns (e.g. resident privacy); 2. Ways in which technologies were implemented: Some staff, relatives and residents were not involved in discussions and decision-making, which seemed to limit understandings of the potential benefits and challenges from the technologies. Involvement of residents appeared particularly challenging. Staff highlighted the importance of training, but staff training appeared mainly informal which did not seem sufficient to ensure that staff fully understood the technologies; 3. Use of technologies in practice: Technologies generated frequent alarms that placed a burden upon staff, but staff were able to use their contextual knowledge to help to counter some of this burden. Some technologies offered a range of data-gathering capabilities, but were not always perceived as useful complements to practice.Implementation of monitoring technologies may be facilitated by the extent to which the technologies are perceived to enhance safety. Implementation may be further facilitated through greater involvement of all stakeholders in discussions and decision-making in order to deepen understandings about the range of potential benefits and challenges from the use of monitoring technologies. Staff training might need to move beyond functional instruction to include deeper exploration of anticipated benefits and the underlying rationale for using monitoring technologies.

Dataset Information

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

Publications

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets