Åsa Dorell1, Hanne Konradsen1,2,3, Ana Paula Kallström1, Zarina Nahar Kabir1. 1. Department of Neurobiology, Care Sciences and Society, NVS, Karolinska Institutet, Stockholm, Sweden. 2. Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark. 3. Department of Gastroenterology, Herley and Gentofte Hospital, Herlev, Denmark.
The number of adults living with dementia is increasing. In 2018, fifty million people worldwide were diagnosed with dementia and it is estimated that this figure will triple by 2050 [1]. The number of family members involved in providing care will increase accordingly and supporting them is crucial in order to increase the quality of life of persons with dementia. Although there have been advances in the treatment of dementia diseases, caregiving is still a challenging situation for the family. Across Europe, family caregivers are confronted with significant challenges regarding supportive care needs for persons with dementia living at home [2, 3]. These include personal care, housekeeping, logistics and financial problems, being responsible for medications, and contact with the healthcare authorities [4]. Such a caregiving role leads to a significant responsibility and little free time for the family caregiver to take care of themselves [5]. A meta-analysis focusing on stress and coping for family caregivers to persons with dementia shows that being a family caregiver is a significant risk factor which can lead to decreased physical health and increased psychological stress [6]. It is well known that family caregiving for persons with dementia is associated with negative consequences for the caregivers such as care burden [7], stress, strain [8], sadness, depression, and anxiety [9], feelings of loneliness and social isolation [10-12] and reduced quality of life [13]. Social isolation and lack of formal support have a negative impact on family caregivers’ personal and social life [10]. Evidence indicates a strong association between being a family caregiver of a person with dementia and symptoms of depression [14, 15]. Lower perceived health of family caregivers is associated with an increased risk for the institutionalisation of persons with dementia [16]. Even in terms of physical health, it has been reported that it is easier to be a caregiver to persons with other chronic diseases compared to persons with dementia [17].The various types of support given to family caregivers to counteract their stress, burden, lack of subjective well-being and social isolation include organising support groups, education about dementia, social work services and face-to-face conversations [18, 19]. Different technical solutions can provide an alternative way and a platform for family caregivers to obtain support from care professionals or to exchange experiences with other family caregivers who are in similar situations [20]. The use of app-based technologies in smartphones is rapidly growing in all age groups. Mobile health (mHealth) applications have increased throughout the world and have been developed for a wide variety of health interventions, predominantly as mobile applications (app) for self-care such as for asthma [21] and diabetes [22]. mHealth is defined as “medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants and other wireless devices” [23]. Older people are more likely to use technology that they are already familiar with [24]. For older people, their motivation and perceived relevance of the interventions are important determinants of the use of mHealth tools [25-27]. Other important factors for using mHealth interventions include their usability and accessibility [27]. Compared to face-to-face meetings with family caregivers, the technical solutions available in the home provide a tool to connect with care professionals without leaving home. mHealth tools are always available and accessible, and they are especially useful for people living in rural areas because of the distance they may be forced to travel to obtain healthcare services [28]. mHealth-based interventions have emerged as a potential solution to support family caregivers and address some of the challenges related to caregiving. Studies have shown that technology-based interventions can reduce depression [6, 29], anxiety, and stress [29, 30] which may lead to improved health and wellbeing of the family caregivers [6, 31–33]. Recent research from Sweden and Denmark, conducted by our research group, on expectations of family caregivers of persons with dementia about a mobile app through which they could be supported by care professionals reported that it would help caregivers to be recognized as individuals needing support [34, 35]. The family caregivers also mentioned that they should receive the support as and when they needed it, at their own pace. The aim of the present study was to describe the experiences of family caregivers of persons with dementia who received professional support through a mobile app and usage of the app.
Method
Study design
This qualitative descriptive study describes the experience of receiving professional support through the interactive mobile app STAV [” STöd för AnhörigVårdare” (Support for family caregivers)] by family caregivers of persons with dementia living at home.
Intervention
Support was offered to family caregivers of persons with dementia (henceforth referred to as family caregivers) by two nurses of the research team through a mobile app over an eight-week period. The mobile application is unique as it was developed by involving the stakeholders, family caregivers and health care professionals and because of it is interactive nature. When developing the app, family caregivers were asked about the contents they would like to have in such a mobile application. The healthcare professionals were asked which types of care needs could be addressed through a mobile application or if it could facilitate communication with caregivers. Both the family caregivers and professionals suggested several functions which would facilitate support in addressing challenging caregiving situations [34]. The mobile app STAV has the following features: 1) chat, 2) mindfulness exercises, 3) weblinks to relevant sites, 4) own contact list, and 5) personal diary [36]. These features were meant to encourage dialogue with care professionals (via chat), to take care of oneself as a caregiver (by using mindfulness exercises), to get an overview of relevant information (collection of web links), and by taking own notes in the diary to record challenging situations to discuss with the care professionals at a later stage. Family caregivers could also create their own contact list of services relevant to their caregiving tasks. The mobile app can be downloaded on a smartphone or tablet that uses the operating systems Android or iOS. A log-in with a username and a pin code is required to use the app.
Participants
Fifteen family caregivers of persons with dementia were recruited to test STAV. Family caregivers who accompanied a family member with dementia to the outpatient cognitive clinic at a major hospital in Stockholm were approached to participate in the study and were selected consecutively. Inclusion criteria of the family caregivers of persons with dementia were that the persons with dementia would live at their own home, the family caregivers were 18 years or older, they were able to read and write Swedish, and they had their own mobile device (smartphone or tablet) with their own internet connection. Family caregivers who were physically or cognitively challenged to communicate were excluded from the study. A total of 12 family caregivers agreed to use the app and to be interviewed. Of the participating family caregivers, seven were women and five men (one was a child to the person with dementia and 11 were partners).
Data collection
The interviews were conducted 4–16 weeks after the use of the mobile app. Although the interviews were meant to take place immediately after the eight-week long support by the nurses in the research team, in late January 2020, data collection was interrupted due to the restrictions related to Covid19 in Sweden. This also resulted in 10 interviews having to be conducted over the telephone instead of face to face. The initial two interviews were conducted face to face at the participants’ homes.A semi-structured interview guide was developed with the specific purpose of exploring the experiences of using the mobile app and its different features. The interviews were between 12–51 minutes long and conducted by one of the co-authors of the study (APK). The respondents were asked about the relevance of each of the features and ease of use of the mobile app. The questions in the semi-structured interview guide with family caregivers were open yet focused on the aim of the study. For example, family caregivers were asked what they thought about the app, their experiences of using the app, and what they thought about the specific features of the app. All the interviews were recorded with permission from the participants.
Data analysis
All the recorded interviews were transcribed verbatim. The interview text was analysed using Braun & Clarke’s [37] six-step thematic analysis approach. The first step was to become familiar with the data. The transcriptions were read and re-read by three of the authors (ÅD, HK, ZNK) several times, taking notes and marking initial ideas. In the second and third steps, coded extracts from the entire data set were independently generated by the three and grouped into potential themes (see example of the analysis process in Table 1). In the fourth step, the three co-authors (ÅD, HK, ZNK) refined the themes together and produced a thematic overview. In the fifth step, the same co-authors continued to name and define the themes together. The last step was to produce the report based on the analysis. All co-authors read and commented on the results.
Table 1
Example of the data analysis.
Data
Extraction of code
Theme
Yes, exactly, I also felt it felt safe and. . .yes it was helpful to know that there was someone, somewhere to get in touch with as well
Support
Filling a gap
At the same time, I thought mindfulness was really good, you sometimes stress yourself out completely unnecessarily and try to unwind—it benefits everyone.
Calming
Foundation for inner calm
I wrote down all of my worries, it was a lot of worries and there was so much then everything and I thought it was awful, I wrote and wrote
Diary
Way of offloading
Ethical considerations
Written informed consent was obtained from the participants of the feasibility study to test the intervention of providing professional support using STAV. Verbal and recorded informed consent was taken prior to conducting the qualitative interviews of the current study. Participants were also reminded that they could withdraw from the study at any point, that the data provided by them would be kept confidential and assured anonymity. The study was approved by the Swedish Ethical Review Authority (Ref.: 2018/1160-31/5).
Results
As a result of the analysis, six themes emerged. The themes were named Filling a gap, Right time and right place, Foundation for inner calm, Better introduction and overcoming technical barriers, Relevant information in one place, and Way of offloading.
Filling a gap
This theme highlights the need for a mobile app for family caregivers. The general experience with the chat and the interaction with the nurse was positive.“Good contact point with experts” (Interview 3)The family caregivers also said that they would recommend the app to others if it was available. The chat feature allowed them to get in touch with a professional if needed.”It was helpful to know that there was someone, somewhere” (Interview 9)Most family caregivers experienced that they received a good response from the nurse when posing a question.“I got ideas and tips about how to handle the future and it was good.” (Interview 8)They said that the chat was the best feature as it provided the possibility to have direct contact with a health professional at their own convenience. This gave a sense of security to the family caregivers.“It felt like having a friend during troubled times.” (Interview 6)Several caregivers requested to be part of a group where peers could communicate with each other. They missed the possibility to join a group chat where they could share experiences and get support from others in similar situations if they were sad or felt lost.“It would have been valuable to exchange some experiences with each other.” (Interview 10)Some family caregivers valued a group chat but wanted to be anonymous in the chat. However, not all family caregivers were interested in participating in a group chat with other caregivers but would appreciate the opportunity to join one if they felt differently with time. It was described as difficult to discuss personal issues without compromising the privacy and dignity of the family member with dementia. The family provided all the support that was needed and there was no need for support from peers in a group chat.“I will never discuss my wife’s situation with anyone else outside the family.” (Interview 2)Some family caregivers indicated that they did not use the app so much but would use the mobile app in the future if it were available and if the situation of their family member with dementia deteriorated. Although they did not necessarily use the app it felt reassuring to have it, to know that someone was on the other end.
Right time and right place
This theme discusses the need for a moderator to get the chat to function as support for the family caregivers. It also refers to the possibility for the caregivers to use the mobile app when they have the time and need it most. It entailed no stress, there was no appointment to be met by the family caregivers, it was flexible to use whenever they needed to. Some family caregivers described that they used the app when they were alone. Having the mobile app during the Covid-19 pandemic was a good alternative to face-to-face meetings due to the restrictions about physical distancing.“Felt good during Corona to have the chat, it is a good idea, this must continue, to provide chat” (Interview 8)The app was not needed during the entire time the person with dementia was cared for by the family caregiver. Rather, the need for support varied depending on the progression of the disease. The family caregivers described that when they first started testing the app, they did not use it so much, but it became of greater value later when the disease had progressed and the need for information, advice, and support increased.“Yes, I missed it afterwards… So, I did not use it that much just during the test period, but I noticed it (its absence) because my husband has recently been diagnosed so it is worse with each passing day, it would probably have been needed now.” (Interview 3)The app was a good contact point with experts.“Great support, I felt a support, from the health care, from you. When I was home alone with the problems, I had to ask and could get answers pretty quickly.” (Interview 3)The nurses played an important role as a moderator to stimulate the family caregivers to use the chat feature on the mobile app. The caregivers felt that they needed someone else to take the initiative to engage in a dialogue.“Need someone else (other than themselves) to take initiative to start a dialogue” (Interview 1)Receiving short messages was appreciated by the family caregivers and to get answers directly so they did not have to wait for the next doctor’s appointment.“Information and prompt answers in small quantity was good” (Interview 4)The possibility to chat individually with the nurse through the mobile app was experienced as positive. It was good to have the opportunity to ask questions. The family caregivers described it as valuable to get quick answers to their questions. However, some caregivers experienced that they did not get answers from the nurse in time or it was too sporadic, so they stopped using the chat.
Foundation for inner calm
This theme relates to the individual experience of using the mindfulness feature in the mobile app. It worked as a foundation for inner calm for the family caregivers when they were in a mood to relax. They needed a starting point of inner calm to take advantage of this feature. If they had time and space for themselves, the mindfulness feature helped to relax. The family caregivers experienced the feature as good and calming. It reminded them to take time for themselves, to sit down, listen and unwind. This is when they had their own time and could focus solely on themselves.“Mindfulness was really good, you sometimes stress yourself out completely unnecessarily and try to unwind—it benefits everyone.” (Interview 3)Some of the caregivers were a little sceptical to the mindfulness feature, the reason being the lack of time for them to wind down. Some mentioned that it was not suitable in a home with a person with dementia, that they could not relax that much. Limited time and a lack of energy were described as obstacles in using the mindfulness feature. Family caregivers also mentioned that they could not use it in the right way, it did not give them the calm and stillness it suggested. However, they had an interest in exploring the mindfulness feature further if time permitted.“The mindfulness features were well thought out, I am very happy with it.” (Interview 6)The mindfulness session was a good length so they could keep their focus on it.
Better introduction and overcoming technical barriers
This theme encapsulates the need family caregivers have for an introduction to the mobile app STAV. Most caregivers had a positive response to the mobile app, but they felt they needed a better introduction about its purpose, the relevance of each feature, and how it could benefit the users.“I probably did not understand its purpose clearly, what I should do, because I had a few problems in the beginning.” (Interview 4)They also requested better information about who they were chatting with. Being introduced to the nurse was important to feel secure when discussing personal emotions and problems.“…..and the question is who I am sharing it (the problems) with then?” (Interview 9)The family caregivers felt that the mobile app needed to be simple, user-friendly, and easy to navigate. Using the mobile app was not a problem for most of the family caregivers given their technical know-how, but there were certain technical difficulties with the mobile app itself which created problems for the users, necessitating a restart of the app several times.“It was difficult to get into the app but was easy to use.” (Interview 8)
Relevant information in one place
The theme addresses the value of having all available information sources in one place. Family caregivers said it was good to have relevant information collected in the mobile app which was a way of keeping oneself updated and receiving useful information that related to one’s specific situation.“This (the links) has given me what I need in principle.” (Interview 11)Through the weblinks, the family caregivers got information about the different associations and organisations available for dementia care. The information also gave ideas and support on how to handle the future and the progression of the diseases. Some of the caregivers stated that the links were the best feature of the mobile app.“The app provides security, I can look for answers to questions I have and find the help I need, so it helps me in this way.” (Interview 6)
Way of offloading
The theme focuses on the diary in the mobile app as a way of documenting issues related to caregiving for the family member with dementia and have it as a basis for discussion with care professionals. It was good to have the notes so as not to forget points of discussion. It was also used as a timeline for the progress of the disease as it is difficult to notice small changes in a person with dementia when together all the time. The diary also served as a platform to write down own thoughts where they wrote down their worries.“I wrote down my worries, there was so much then, so I wrote and wrote.” (Interview 8)It was a way to lift the burden from their shoulders.
Discussion
The results of this study provide insight into experiences, needs, and the barriers faced by family caregivers of persons with dementia in receiving professional support through the mobile app STAV and its usage. The main findings show that there is a need for a mobile app for family caregivers to receive support and information easily and without having to leave home to meet health care professionals. This is in line with studies that describe technical solutions as useful for those who are unable to leave their family member with dementia unattended for a while [38, 39]. Digital-based interventions offer family caregivers the opportunity to access the information at their convenience in terms of time and from the privacy of their own homes [40]. In the present study, the family caregivers had the opportunity to use it when they had the time and at their own pace. The interactivity of the app was appreciated by the family caregivers and most said they would recommend the app to others. Most apps are designed for information seeking, medical advice, advice for self-management, or designed for advanced care planning of patients with chronic conditions [41]. To the best of our knowledge, there are no scientific reports describing how such interactive apps were developed and evaluated. Rathnayake et al. [42] found in their study that caregivers had a positive attitude towards the mHealth app as being useful and addressing information and caregivers’ educational needs. It is essential for family caregivers to get suggestions as to what they as caregivers can do to provide better care for a person with dementia [43]. The results from this study show that the mobile app STAV fills a gap for the family caregivers and its flexibility is appreciated by the caregivers. They can use it whenever it is convenient for them. The feeling of a sense of security was an experience many caregivers shared, to know that there was a person on the other end ready to help if needed. The chat feature was described as the best part of the app. The family caregivers had mixed reactions about the possibility of a group chat. Some family caregivers lacked the opportunity to have a group chat and wanted to share experiences with peers in a similar situation. Studies describe peer support as a key component of support for family caregivers of persons with dementia. Specifically, support received from other participants in an e-health or m-health programme in the form of discussing emotions, having supportive messages, sharing information, and motivation are key factors to bring about positive effect on caregiver stress [44].The family caregivers in the current study had varying needs of the app and it was mainly based on the progression of the disease of the family member and the time available for oneself. The interaction with the nurse through STAV was valued. Caregivers expressed that the app had the potential to provide support when the nurses were active and took contact with the family caregivers. This is in line with a study where the health care professional had a proactive approach and contacted the family caregivers which significantly decreased hardship and grief compared to the control group [45]. Overall, the contact with the nurse was a positive experience for the family caregivers. Some of the family caregivers mentioned challenges in the interaction with the nurse, such as the nurse was not always proactive, the time between asking a question and receiving a response was sometimes too long. Some described a lack of continuity not knowing who the contact nurse was, which created feelings of confusion and insecurity. Other research also mentions that facilitating factors in communication with health care professionals are motivation, support, and feedback from the staff [25].One caregiver mentioned he had no interest in using the group chat feature in the app because it was not the right way to obtain support. His own family was a better source of support. Family and friends are an important factor for family caregivers of persons with dementia [46]. Family support and reflections of their situation are particularly important when life situation changes and their roles in the family changes from being partner or children to caregiver [47].An expressed need by the family caregivers in the present study was to be better informed about the objective and relevance of the app, more information about each of the features, and when to use the different features. The family caregivers mentioned that the app was easy to use although some technical problems were faced during the test period. The contents in the app were considered relevant by most family caregivers. The web links in the app were perceived as an easy and accessible source of information. Using the app for support provides the caregivers with a sense of being connected to the health team which can lead to more effective support for caregivers [48].
Strengths and limitations
To strengthen the credibility of this study, three of the co-authors discussed with each other at each step of the analysis process and reached a consensus regarding the themes. The three co-authors also independently reflected upon the results in relation to the interview texts to ensure that nothing was overlooked. A limitation in this study was that the data collection could not be conducted directly after the intervention due to the COVID-19 pandemic. The lapse of time between the end of the intervention to data collection spanned over a couple of weeks to four and a half months which could have led to some recall bias. All participating family caregivers were supposed to be interviewed face-to-face but due to the restrictions on physical distancing during the COVID-19 pandemic, some of the interviews were conducted via telephone. This affected the length of the interviews, the telephone interviews being significantly shorter than the two face-to-face interviews. Although interviews on distance are often shorter than face-to-face interviews, both have shown to contain the same range of topics [49]. Telephone interviews may also have affected how much the family caregivers expressed about their experiences over the telephone. It is reported that telephone interviews can give the participants a feeling of confidence to share their inner thoughts [50]. A limitation of the current study was that one of the nurses providing support through the app was the same person responsible for the follow-up interviews with the family caregivers. This could potentially have inhibited the family caregivers in sharing their experiences frankly.
Conclusion
Interactive apps for family caregivers of persons with dementia have the potential of being an important tool through which to provide professional support. This is particularly of relevance given “ageing in place” policy and digitalisation of health and social care services in Sweden. This app has a core that is the same for all but can be modified to provide support to other FCs providing care to persons with other chronic conditions. The chat feature enabled direct communication at the time and place when the caregiver needed it. This especially filled a gap during the COVID 19 pandemic when face to face meetings were not possible.Our research indicated that care professionals have to take an active role in the chat forum to simulate interaction with the family caregivers. The mindfulness feature was used to facilitate selfcare of the family caregivers. The app enabled caregivers to access information and support when it was convenient for them. However, the users need careful introduction to the use of the app and help to overcome technical barriers. Further research is needed to assess the feasibility of the app as an intervention tool for family caregivers to persons with dementia and also to assess it is effectiveness on relieving impact of caregiving.(DOCX)Click here for additional data file.21 Sep 2021
PONE-D-21-18728
“A friend during troubled times”: Experiences of family caregivers looking after people with dementia when receiving professional support via a mobile app
PLOS ONE
Dear Dr. Dorell,Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.It is requested to (see the enclosed reviewers' comments):-include more and longer quotations presenting the words of the interviewee;-provide more information or references about the STAV app;- carefully discuss the "gaps of knowledge" behind this work in relation to the relevant literature;-include a table that displays the sub-themes that emerged, in addition to just listing the six themes;- revise the declaration of intent in the abstract;- better specify the narrative in the introduction;- revise the conclusion adding future directions and perhaps the specificities of the Swedish case;- carefully revise the language;-add a few lines explaining the differences between the terms "dementia" and "Alzheimer";-harmonize the presentation of numbers in the manuscript.
Please submit your revised manuscript by Nov 05 2021 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.Please include the following items when submitting your revised manuscript:
A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols.We look forward to receiving your revised manuscript.Kind regards,Filomena PapaAcademic EditorPLOS ONEJournal Requirements:When submitting your revision, we need you to address these additional requirements.1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found athttps://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf2. Please ensure that you include a title page within your main document. We do appreciate that you have a title page document uploaded as a separate file, however, as per our author guidelines (http://journals.plos.org/plosone/s/submission-guidelines#loc-title-page) we do require this to be part of the manuscript file itself and not uploaded separately.Could you therefore please include the title page into the beginning of your manuscript file itself, listing all authors and affiliations.3. Please include additional information regarding the interview guide used in the study and ensure that you have provided sufficient details that others could replicate the analyses. Please include a copy, in both the original language and English, as Supporting Information.4. In your Data Availability statement, you have not specified where the minimal data set underlying the results described in your manuscript can be found. PLOS defines a study's minimal data set as the underlying data used to reach the conclusions drawn in the manuscript and any additional data required to replicate the reported study findings in their entirety. All PLOS journals require that the minimal data set be made fully available. For more information about our data policy, please see http://journals.plos.org/plosone/s/data-availability."Upon re-submitting your revised manuscript, please upload your study’s minimal underlying data set as either Supporting Information files or to a stable, public repository and include the relevant URLs, DOIs, or accession numbers within your revised cover letter. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. Any potentially identifying patient information must be fully anonymized.Important: If there are ethical or legal restrictions to sharing your data publicly, please explain these restrictions in detail. Please see our guidelines for more information on what we consider unacceptable restrictions to publicly sharing data: http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. Note that it is not acceptable for the authors to be the sole named individuals responsible for ensuring data access.We will update your Data Availability statement to reflect the information you provide in your cover letter.[Note: HTML markup is below. Please do not edit.]Reviewers' comments:Reviewer's Responses to Questions
Comments to the Author1. Is the manuscript technically sound, and do the data support the conclusions?The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: PartlyReviewer #2: Yes********** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/AReviewer #2: N/A********** 3. Have the authors made all data underlying the findings in their manuscript fully available?The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: YesReviewer #2: Yes********** 4. Is the manuscript presented in an intelligible fashion and written in standard English?PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: YesReviewer #2: Yes********** 5. Review Comments to the AuthorPlease use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: I do NOT have any potential or perceived competing interests that may influence my review. For further certainty, I state that I have NO actual or potential pecuniary, professional, reputational or other interests that might influence or might be perceived to influence my review.In the interest of transparency, the Comments to the Author are identical to those provided to the Editor.Thank you for the opportunity to review this manuscript, which presents the results of a qualitative study of a mobile application designed to support caregivers of people with dementia. The subject (dementia) is perennially important, it addresses a substantial clinical need (caregiver strain), and it involves a novel intervention (mHealth app). It is clearly written and easy to follow. It appears to conform to reporting guidelines.I entertain some concern that the size of the study (12 interviewees) may not be large enough to justify publication in a large journal of general interest, but I will leave this matter to the Decision Editor.I recommend that the manuscript be resubmitted with MAJOR REVISIONS.In general, the ratio of analysis to evidence is too high. I would like to see more and longer quotations to let the interviewees "speak for themselves" a bit more. I think richer quotations would be helpful in illuminating and in some cases supporting your findings, and in allowing the reader to critically assess your conclusions.As an example, on page 7, the first 2 paragraph state many different observations about multiple aspects of the theme but then this is only supported by basically 2 sentences of quoted text.Particularly as your study about the basis for your app is unpublished, I would also like to know a lot more about STAV, how it was developed (and any research that it was informed by), what you think is unique about it, and so on. It's a bit hard to get a sense of how the app works and how exactly it addresses perceived needs.You also state that "not much attention has focused on the physical and mental health of the family members who have to look after their loved ones who have dementia and who take care of them at home." I think this statement needs to be qualified a bit. There are in fact at least three fairly recent reviews of interventions focused on dementia caregivers; Gitlin and colleagues state that there have been around 200 such interventions to date.Gitlin et al. Gerontologist 2015;55:210–26Walter et al. Gerontologist 2019;20:1–11Hinton et al. BMJ Glob Health. 2019 Nov 12;4(6):e001830Lastly, one specific point -- I would suggest you include a table that displays the subthemes that emerged, in addition to just listing the six Themes. This would be useful in signposting the discussion for the reader.Reviewer #2: The paper introduces a qualitative study with caregivers of persons with dementia living at home using a mobile app.I appreciated the article, but also found the necessity for the following revisions.1. More information or references should be provided about the STAV app.ABSTRACT2. The abstract mentions "to evaluate the app's usability". I found this one a rather emphatic declaration, whereas the paper only discusses a few considerations about usablity. I suggest softening the declaration of intent.INTRODUCTION3. Some references report studies in specific populations (e.g. ref.2 in Sweden, ref.3 in Europe,...), yet the first paragraph of the introduction is very generic and does not account for geographic differences. I suggest a better level of specification in the narrative.METHOD4. At the beginning of the "Intervention" section, the sentence "an overview of availableinformation channels (collection of web links)" needs a verb.5. At the beginning of the "Data collection" section, the sentence "it had to be put on hold" should be rephrased as "they had to be put on hold".6. At the beginning of the "Ethical considerations" section, the sentence "Written informed consent were obtained" should be rephrased as "Written informed consent was obtained".7. Similar mistakes appear here and there in the text: I suggest a careful langiage revision.8. I am curious about the chats between nurses and caregivers via the app. Could you provide examples of topics and themes, and the level of detail they were dealt with?CONCLUSION9. I felt the "Conclusion" section was rather meager and generic. I suggest to improve it by also adding future directions, and perhaps the specificities of the Swedish case (if any).10. I am not an expert of neurobiology, therefore I found it difficult to navigate through the terms "dementia" and "Alzheimer", both used in the paper. I guess it could be useful for readers like me to add a few lines explaining the differences.11. Throughout the paper numers are sometimes written as digits and sometimes as words: please harmonise.********** 6. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.If you choose “no”, your identity will remain anonymous but your review may still be made public.Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: Yes: Thom RingerReviewer #2: Yes: Bartolomeo Sapio[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.]While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.26 Jan 2022Include more and longer quotations presenting the words of the interviewee: See response to reviewer 1’s comment below.Provide more information or references about the STAV app: See response to reviewer 1 & 2s’ comments below.Carefully discuss the "gaps of knowledge" behind this work in relation to the relevant literature: The background has been revised to highlight the necessity of providing support to family caregivers of persons with dementia through mHealth solutions.Include a table that displays the sub-themes that emerged, in addition to just listing the six themes:See response to reviewer 1’s comment below.Revise the declaration of intent in the abstract: The abstract has been revised.Better specify the narrative in the introduction: This is done following the reviewers’ advice.Revise the conclusion adding future directions and perhaps the specificities of the Swedish case;- carefully revise the language;-add a few lines explaining the differences between the terms "dementia" and "Alzheimer";-harmonize the presentation of numbers in the manuscript.:See response to reviewer 1 & 2s’ comments below.Please include additional information regarding the interview guide used in the study and ensure that you have provided sufficient details that others could replicate the analyses. Please include a copy, in both the original language and English, as Supporting Information: The interview guide both in the Swedish and English is added.Reviewer #11. I would like to see more and longer quotations to let the interviewees "speak for themselves" a bit more. I think richer quotations would be helpful in illuminating and in some cases supporting your findings, and in allowing the reader to critically assess your conclusions. We have added more quotations. However, as mentioned in the paper, interviews from distance are often shorter than face-to-face interviews but contains the same range of topics.2. Particularly as your study about the basis for your app is unpublished, I would also like to know a lot more about STAV, how it was developed (and any research that it was informed by), what you think is unique about it, and so on. We have expanded the description of development oft the intervention in the method section. We have also referred to the publication that described how the proposed intervention was to be developed (Kabir et al, 2020).3. You also state that "not much attention has focused on the physical and mental health of the family members who have to look after their loved ones who have dementia and who take care of them at home." I think this statement needs to be qualified a bit. The sentence is rewritten. We thank the reviewer for the references on interventions for family caregivers. One of these references has been incorporated in the introduction describing different types of support for family caregivers.4. I would suggest you include a table that displays the subthemes that emerged, in addition to just listing the six Themes. This would be useful in signposting the discussion for the reader.A table on data analysis process has been included. As described in the section on data analysis, we did not include subthemes as part of the analytic process. We refer to Braun & Clark’s (2006) article in describing the steps of analysis undertaken in the study.Reviewer #2:1. More information or references should be provided about the STAV app.We have expanded the description of development of the intervention in the method section. We have also referred to the publication that described how the proposed intervention was to be developed (Kabir et al, 2020).2. The abstract mentions "to evaluate the app's usability". I found this one a rather emphatic declaration, whereas the paper only discusses a few considerations about usablity. I suggest softening the declaration of intent. It is changed in the manuscript and the abstract by using the word ‘usage’ instead of ‘usability’ which is a more technical word as the reviewer indicates.3. Some references report studies in specific populations (e.g. ref.2 in Sweden, ref.3 in Europe,...), yet the first paragraph of the introduction is very generic and does not account for geographic differences. I suggest a better level of specification in the narrative.The introduction now begins with the global picture followed by the European situation on challenges faced by family caregivers in caring for persons with dementia. Thereafter we provide examples of specific challenges for caregivers across countries.4. At the beginning of the "Intervention" section, the sentence "an overview of availableinformation channels (collection of web links)" needs a verb. It is corrected.5. At the beginning of the "Data collection" section, the sentence "it had to be put on hold" should be rephrased as "they had to be put on hold".It is reformulated.6. At the beginning of the "Ethical considerations" section, the sentence "Written informed consent were obtained" should be rephrased as "Written informed consent was obtained". It is corrected.7. Similar mistakes appear here and there in the text: I suggest a careful language revision.The manuscript has been thoroughly checked for linguistic errors.8. I am curious about the chats between nurses and caregivers via the app. Could you provide examples of topics and themes, and the level of detail they were dealt with?An example of the topic of the chat between the family caregiver and the researcher included how to address behavioral challenges of the person of dementia. However, the chat data was not saved for analysis as we did not have ethical approval for it.9. I felt the "Conclusion" section was rather meager and generic. I suggest to improve it by also adding future directions, and perhaps the specificities of the Swedish case (if any). The conclusion has been revised to capture the implications of the specific findings of our study.10. I am not an expert of neurobiology, therefore I found it difficult to navigate through the terms "dementia" and "Alzheimer", both used in the paper. I guess it could be useful for readers like me to add a few lines explaining the differences. We have chosen to use the generic term dementia so as not to confuse the readers.11. Throughout the paper numbers are sometimes written as digits and sometimes as words: please harmonise. We have followed the following rule: a number is written in words when a sentence begins with a number; in case of single digital number, it is written in words; and in case of larger numbers than single digit they are written as numeric. The manuscript has been checked for mistakes.Submitted filename: Response to Reviewers.docxClick here for additional data file.2 May 2022
PONE-D-21-18728R1
“A friend during troubled times”: Experiences of family caregivers to persons with dementia when receiving professional support via a mobile app
PLOS ONE
Dear Dr. Dorell,Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.It is requested to revise the manuscript according to comments of Reviewer 2.Please submit your revised manuscript by Jun 16 2022 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.Please include the following items when submitting your revised manuscript:
If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.
A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'.An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'.If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols.We look forward to receiving your revised manuscript.Kind regards,Filomena PapaAcademic EditorPLOS ONEJournal Requirements:Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice.Additional Editor Comments (if provided):The use of pictures (e.g. screen shots, drawings) could be useful to describe the STAV app.[Note: HTML markup is below. Please do not edit.]Reviewers' comments:Reviewer's Responses to Questions
Comments to the Author1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation. Reviewer #2: (No Response)Reviewer #3: All comments have been addressed********** 2. Is the manuscript technically sound, and do the data support the conclusions?The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #2: YesReviewer #3: Yes********** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #2: N/AReviewer #3: N/A********** 4. Have the authors made all data underlying the findings in their manuscript fully available?The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #2: YesReviewer #3: Yes********** 5. Is the manuscript presented in an intelligible fashion and written in standard English?PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #2: YesReviewer #3: Yes********** 6. Review Comments to the AuthorPlease use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #2: Although the authors improved the paper by addressing the reviewers' comments, I must confess I am not satisfied with the ways they chose to address some of those comments.The reviewers asked for more information about the STAV app, how it was developed (andany research that it was informed by), what you think is unique about it, and so on. The authors added a generic sentence bearing little or no extra information.The reviewers asked to improve conclusions by adding future directions and the specificities of the Swedish case. The authors slightly modified one sentence without really tackling the issue.The reviewers asked to include a table that displays the subthemes that emerged. The authors added a table with a few examples of the data analysis, which I do not find helpful at all.I suggest the authors consider the reviewers' comments in a more serious way, if they want to get their paper published in the journal. These are not major revisions and can be done with a little effort.Reviewer #3: (No Response)********** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.If you choose “no”, your identity will remain anonymous but your review may still be made public.Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #2: Yes: Bartolomeo SapioReviewer #3: Yes: Merle Varik[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.]While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.
20 Jun 2022Thanke you for your comments, we have revised the manuscript after the reviewer #2 comments.Submitted filename: Response to Reviewers.docxClick here for additional data file.12 Jul 2022“A friend during troubled times”: Experiences of family caregivers to persons with dementia when receiving professional support via a mobile appPONE-D-21-18728R2Dear Dr. Dorell,We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org.If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org.Kind regards,Filomena PapaAcademic EditorPLOS ONEAdditional Editor Comments (optional):All comments have been addressed. Thank you.Reviewers' comments:Reviewer's Responses to Questions
Comments to the Author1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation. Reviewer #2: All comments have been addressedReviewer #3: All comments have been addressed********** 2. Is the manuscript technically sound, and do the data support the conclusions?The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #2: YesReviewer #3: Yes********** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #2: N/AReviewer #3: N/A********** 4. Have the authors made all data underlying the findings in their manuscript fully available?The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #2: YesReviewer #3: Yes********** 5. Is the manuscript presented in an intelligible fashion and written in standard English?PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #2: YesReviewer #3: Yes********** 6. Review Comments to the AuthorPlease use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #2: Thanks for addressing my comments: tha paper is now ready for publication.Reviewer #3: This qualitative descriptive study's aim is achieved, and the manuscript was well and appropriately revised.********** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.If you choose “no”, your identity will remain anonymous but your review may still be made public.Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #2: Yes: Bartolomeo SapioReviewer #3: No**********20 Jul 2022PONE-D-21-18728R2“A friend during troubled times”: Experiences of family caregivers to persons with dementia when receiving professional support via a mobile appDear Dr. Dorell:I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.If we can help with anything else, please email us at plosone@plos.org.Thank you for submitting your work to PLOS ONE and supporting open access.Kind regards,PLOS ONE Editorial Office Staffon behalf ofDr. Filomena PapaAcademic EditorPLOS ONE
Authors: Esther Parra-Vidales; Felipe Soto-Pérez; Mª Victoria Perea-Bartolomé; Manuel A Franco-Martín; Juan L Muñoz-Sánchez Journal: Actas Esp Psiquiatr Date: 2017-05-01 Impact factor: 1.196
Authors: Patrícia Lindeza; Mário Rodrigues; João Costa; Manuela Guerreiro; Mario Miguel Rosa Journal: BMJ Support Palliat Care Date: 2020-10-14 Impact factor: 3.568
Authors: Matheus Costa Stutzel; Michel Pedro Filippo; Alexandre Sztajnberg; Rosa Maria E M da Costa; André da Silva Brites; Luciana Branco da Motta; Célia Pereira Caldas Journal: BMC Med Inform Decis Mak Date: 2019-07-22 Impact factor: 2.796