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Theory Testing of Patient Perspectives Using a Mobile Health Technology System in Heart Failure Self-care

Hägglund, Ewa RN, PhD; Strömberg, Anna RN, PhD; Hagerman, Inger MD, PhD; Lyngå, Patrik RN, PhD

doi: 10.1097/JCN.0000000000000595
ARTICLES: Heart Failure
Free

Background: There is an increasing interest in mobile health (mHealth), the use of mobile devices for supporting self-care in persons with heart failure. However, an established theoretical framework to explain, predict, and understand the phenomena of mHealth to support self-care is lacking.

Objective: The aim of this study was to deductively test if the situation-specific theory of heart failure self-care could be applied in the context of persons with heart failure using an mHealth system with a tablet computer connected to a weighing scale to support their self-care. We wanted to test whether the 3 phases of the self-care process (ie, self-care maintenance, symptom perception, and self-care management) could be validated in the experiences of persons with heart failure using an mHealth tool.

Methods: A qualitative study design was used with semistructured interviews. Data were analyzed deductively using content analysis and coded according to a structured matrix into 1 of the 3 predefined categories: self-care maintenance, symptom perception, or self-care management

Results: Seventeen persons with heart failure, with mean age of 75 years, participated. The mHealth system was found to be feasible, influencing adherence and providing support for maintaining self-care as well as influencing both physical and psychological symptom perception.

In persons with heart failure, the mHealth tool experience influenced the development and use of skills and fostered independence in self-care management. An interaction with healthcare professionals was sometimes needed in combination with the mHealth tool.

Conclusions: The findings confirmed that “the situation-specific theory of heart failure self-care” could be applied in this context.

Ewa Hägglund, RN, PhD Department of Cardiology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.

Anna Strömberg, RN, PhD Professor, Division of Nursing Science, Department of Medical and Health Sciences and Department of Cardiology, Linköping University, Sweden.

Inger Hagerman MD, PhD Department of Cardiology, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.

Patrik Lyngå, RN, PhD Karolinska Institutet, Department of Clinical Science and Education and Department of Cardiology, Karolinska Institutet, Södersjukhuset, Stockholm, Sweden.

Disclosure: All authors confirm the ICMJE criteria for authorship credit concerning best practice and ethical standards in the conduct and reporting of research (http://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html) as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, and (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.

The authors have no funding or conflicts of interest to disclose.

Correspondence Ewa Hägglund, RN, PhD, Heart and Vascular Outpatient Clinic C289, Karolinska University Hospital, Huddinge, 14186 Stockholm, Sweden (eva.hagglund@sll.se).

Online date: July 31, 2019

Improving the self-care process in patients with heart failure is of great importance because self-care has been shown to decrease hospitalizations and improve survival.1–4 Poor self-care is estimated to explain approximately 50% of hospitalizations for acute decompensated heart failure.5 Self-care is strongly emphasized in clinical guidelines for heart failure treatment and care.3,6

In The Situation-Specific Theory of Heart Failure Self-Care, self-care is defined as “a naturalistic decision-making process that influences actions that maintain physiologic stability, facilitate the perception of symptoms and direct the management of those symptoms.”7(p226) The self-care process is described as 3 phases: self-care maintenance, symptom perception, and self-care management.7 Self-care maintenance includes adherence to medication, daily weighing, physical activity, following salt restriction, eating a heart-healthy diet, smoking/nicotine cessation, moderate alcohol intake, and obtaining appropriate immunizations. Symptom perception is the process where the patient recognizes symptoms related to heart failure.7 However, this is a difficult task under the influence of co-morbidities which may affect bodily sensations from conditions other than HF.8 Symptom perception is followed by self-care management, where an ability to evaluate symptoms and signs of deterioration and to maintain health occurs.7 These 3 phases can be challenging for persons with heart failure,7,9–12 and self-care is dependent on motivation and the person's ability to use his or her knowledge and acquire new insights and skills.13,14

There is a trend toward increased use of technology in heart failure care, and investigators have shown that technology can improve the self-care process and health-related quality of life as well as reduce morbidity and mortality.9,15,16 Over the last decade, a shift towards a greater emphasis on the ill person’s responsibility, together with the family’s role of involvement in the self-care process, has been seen.6,17 A mobile health (mHealth) system is defined as the use of a patient monitoring device for medical and public health practice.18 Different mHealth systems can offer help and support in the self-care process, such as adherence to medical treatment or when to contact the healthcare team, and can provide knowledge about the condition itself and self-care behaviors.15

If and how mHealth can support the self-care process in persons with heart failure or when, and in what form, it should be delivered is not yet known.18 Two meta-analyses have shown positive results with mHealth regarding outcomes in heart failure but conclude that studies often fail to report underlying mechanisms that explain how self-care is supported as well as the theoretical framework.19,20 In this study, we aimed to deductively test whether the situation-specific theory of heart failure self-care could be applied in patients with heart failure who used an mHealth system with a tablet computer connected to a weighing scale (Optilogg—see Box 1) to support their self-care. We wanted to determine if the 3 phases of the self-care process (self-care maintenance, symptom perception, and self-care management) could be validated in the experiences of persons with heart failure using an mHealth tool.

Box 1 Description of the mHealth System Optilogg

Optilogg can be described briefly as a compliance catalyst mHealth system. It consists of a tablet computer locked to custom software, prepared in advance, and wirelessly connected to a weight scale installed in the person's home. By stepping on the scale every morning, the weight was transferred to the tablet. Based on the weight, built-in intelligence could detect a deterioration in the heart failure (HF) status and titrate the dose of diuretics. Every day, together with the recommended dosage of diuretics, a brief tip was given on lifestyle maintenance in HF. Every fifth day, the persons estimated their symptoms (fatigue, shortness of breath, and swelling/edema) together with quality of life. The mHealth system provided the opportunity to search for information via the tablet such as adaptive education with visual feedback at any time concerning self-care, including weight and health-related quality of life trends. If the mHealth system detected HF deterioration, the person was instructed to up-titrate the diuretics. If no change was detected for 3 days, instructions were given to contact their healthcare provider. The goal of using Optilogg was to encourage self-efficacy, as the person had the potential to act and develop within the whole self-care process.

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Method

Design

A qualitative approach with a deductive content analysis, inspired by Elo and Kyngas,21 was used to operationalize the data.

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Study Participants

We recruited participants from the randomized clinical trial “Patient-Centered Management of Heart Failure,” which has been published elsewhere.22 All 32 persons who had used the mHealth system Optilogg in the randomized controlled trial were contacted and asked to participate. Seventeen persons (6 women; mean age, 75 years) agreed to participate and signed a consent form. Reasons given for not participating were not interested, lack of time, traveling, or being burdened by heart failure symptoms.

The principles of the Declaration of Helsinki23 were followed throughout the study and ethical approval was granted by the regional ethical review board in Stockholm (ref. 2012/2176-31). Confidentiality was guaranteed, and the interviewees could withdraw from the interview at any time without giving any explanation.

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Data Collection

Semistructured interviews were conducted by 3 heart failure nurses in a secluded room at the hospitals or in the person's home. The opening question was “Can you tell me about your own experiences of using the tablet computer and the weight scale?” Probing questions were used, such as “Can you tell me in what way…?” and “How did you experience…?” to get a deeper understanding of the experiences. The nurses had no professional relationship with the study participants and the interviews lasted between 20 and 60 minutes. A pilot interview was performed to test the interview guide. As the interview guide worked sufficiently, no changes were made, and the first interview was included in the analysis.

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Data Analysis

The interviews were tape recorded and transcribed verbatim. The text was read several times, and after making sense of the whole, meaning units (≥1 sentences) were selected.21 The data were then coded according to a structured matrix into 1 of the 3 predefined categories: self-care maintenance, symptom perception, or self-care management,7 followed by the analysis process of sorting and summarizing the data into codes. The data were further abstracted and formulated into subcategories, which formed the basis for the presentation of findings.

In accordance with the situation-specific theory of self-care, self-care maintenance, symptom perception, and self-care management were the predetermined categories. For example, statements considered to belong to self-care maintenance, captured treatment adherence and healthy behaviors. Technical barriers were also included as they made it difficult to be adherent. Within the category of symptom perception, statements described the monitoring process of listening to the body and involved detection, interpretation, and labeling of the physical and psychological symptoms and signs. Lastly, there were statements regarding when a patient's evaluation of signs and symptoms led to an action, such as increasing the diuretic dose or contacting the healthcare team when detecting weight gain. This was considered lf-care management.

Trustworthiness was strengthened through the discussion of each step in the analysis process until a consensus on the interpretation was achieved. The analysis process was described (Table 2) and the predefined categories were supported by the subcategories. Further, quotations were used to show a link between data and results, as suggested by Elo and Kyngas.21

TABLE 2

TABLE 2

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Findings

Seventeen patients participated in the study, and demographic data are shown in Table 1. The data were reviewed for content and coded for correspondence with an exemplification of the predefined 3 categories. Eight subcategories emerged from the coding of the interviews, corresponding to 1 of the 3 predefined categories: self-care maintenance, symptom perception or self-care management. An example of the analysis process is presented in Table 2.

TABLE 1

TABLE 1

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Self-care Maintenance

Adherence

All participants in this study weighed themselves daily and stated that they had developed a routine and created a habit. Receiving information as daily pop-ups gave consistent reminders to adhere to daily weighing, leading to reflection and the development of skills and raising awareness of the importance of self-care: “I've learned to be adherent, because now I know…that's important…I weighed myself regularly in the morning.”

Being adherent and creating new self-care habits require effort. Several persons took the mHealth system with them when traveling. Several of the respondents had increased their knowledge of general self-care and tried their best to pursue a healthy lifestyle using current self-care guidelines and to create good habits like increasing physical activity: “Even if I do not feel strong enough to walk long distances, I can always walk a little bit…. That's also a way of being physically active.”

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Support

Involvement with the mHealth system created increased responsibility to perform self-care and increased awareness through a change in the way of thinking and the possibility of gaining knowledge. Weight, diet, physical activity, smoking cessation, and reduction of alcohol intake were mentioned as the most important areas. The mHealth system was described as enjoyable and easy to use for self-care guidance: “I felt I got a lot of support at the beginning…. You got a lot of tips on when to contact healthcare providers.” Several persons living in a relationship emphasized the support from their partners in remembering to perform self-care and sharing self-care advice, thus elucidating the importance of family support in the self-care process.

Although knowledge of heart failure varied, there was considerable appreciation of the tablet as a reminder and the mHealth system served as a support in the transition from hospital care to fending for oneself at home: “It was like a continuation of the hospital care, a small proceeding of care, by doing it yourself, you understood.”

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Barriers

Several persons commented that various technical issues occurred. For example, the mHealth system was sensitive to balance tremors. Other common barriers were a lack of contact between the scale and the tablet or a need to replace batteries: “…sometimes it disconnected, and I didn't know why. It is important that everything works technically so that you do not lose interest.” Technical issues were not considered a problem if rapid technical support was available. Support was important for patients so that they did not lose trust in the mHealth system.

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Symptom Perception

Physical Features Indicating Disease

Most of the persons had noticed a change in weight and expressed an understanding of the weight gain as important, whereas a few did not interpret it as vital. Experiences of symptom perceptions due to excessive fluid accumulation were connected to weight gain, visualized externally, while a feeling of a change in the body occurred. Elucidation in assistance of the mHealth system was considered beneficial and helped with interpreting their symptoms. Persons experienced how symptom perception and objective data, such as body weight, were linked together. This led to the recognition and interpretation of symptoms, which strengthened their own experiences: “…the [mHealth system] increased awareness of what you really knew before, the fluid accumulation in the body is so important to your general condition.” Or, as another person described it: “If you eat something that is very salty, for example, you go straight up…. The next day you see that you have put on more weight, because it's liquid that you store.”

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Psychological Distress

There were experiences of stress in the category of symptom perception. Some of the persons described psychological distress over their heart failure and that symptoms like fluid retention made them feel sad and decreased their well-being. One informant described it as follows: “I gained too much fluids in my lungs…you get breathless and tired and generally depressed.” Some felt that the mHealth system helped persons to manage their heart failure, in a psychological sense by offering support, comfort, and a feeling of not being alone in their situation. The mHealth system thus served as a significant means of support.

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Self-care Management

Developing and Using Skills

Even though adherence to weighing increased, there were differences in response to symptoms when they occurred. Persons gained an insight into their management of heart failure by making a habit of using the tablet and scale on a regular basis. They developed skills over time in monitoring their weight and symptom changes, sometimes through the diagram on the tablet. They also increased their knowledge to gain a deeper insight into how to perform self-care management. They reflected that learning takes time, effort, and being or becoming motivated: “I had taken some more diuretics to get rid of water and I really lost weight again.” Others understood the importance of management but chose other ways of listening to their bodies concerning the side-effects of diuretics. Past experiences also affected the choice of management. They expressed a desire to keep up with a healthy lifestyle and continue to develop.

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Independence

There was a great deal of interest in autonomy by gaining the ability to regulate medication at home, together with determining which action was required. Decisions were made not to follow self-care advice proposed by the tablet as some of the persons felt that they could take responsibility on their own. They trusted their own ability to make considerations that suited their daily life. Their knowledge made them confident. One person made an independent decision not to follow the advice from the tablet about diuretics: “…then I should take diuretic pills, but I never took more than one. I did not need any more, because I decided a bit myself…I saw myself what I needed.” Some persons did not trust the advice from the tablet alone and wanted to consult their doctor before making changes in their treatment. For example, they made decisions that medicine prescriptions from the mHealth system were not useful or even correct and contacted their regular doctor to get support in handling the situation.

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Discussion

The findings from this study demonstrate the usefulness of the situation-specific theory of heart failure self-care7 by exploring the experiences of persons with heart failure using an mHealth system to support their self-care. The analysis revealed that the 3 phases of the self-care process—self-care maintenance, symptom perception, and self-care management—could be confirmed in the experiences of persons with heart failure using the mHealth system with a tablet computer connected to a weighing scale. Daily weighing is recommended in all clinical guidelines and is an important part of self-care.3,9 The importance of weighing in relation to self-care maintenance appeared clearly. It was daily weighing that formed a routine and strengthened adherence, thereby creating an awareness of the importance of self-care.

The persons in the current study described the mHealth system as easy to use and understand, as well helping them increase knowledge and provide deeper insight into the self-care process. It was also seen as an important means of support in the transition from hospital care to home, which is a vulnerable phase for persons with heart failure with increased risk of deterioration.9 The mHealth system helped persons with heart failure to interpret symptoms and identify weight gain and fluid accumulation as signs of deterioration in heart failure, thus creating and building useful knowledge and skills in the self-care process. These observations are confirmed by a recent systematic review summarizing the effects of mHealth tools.18 Knowledge and skills reduced stress and gave a feeling of being in control. On the other hand, learning about symptom perception gave individuals the insight that they suffered from a chronic condition that caused the symptoms—a fact that could not change.

The persons in the current study expressed feelings of security and freedom of choice about when to seek hospital care. They also expressed the possibility of doing something themselves through a sense of autonomous self-esteem and self-efficacy, which could affect the self-care process. The findings in this study indicate a deeper insight into the relationship between the experience of symptoms and knowledge leading to self-efficacy in heart failure management, partially through consistent reminders from the mHealth device. Confidence is a known factor related to self-care behavior7 and seems to be a mediator between knowledge, health literacy, and social support.24,25

The independence in some persons in the study made them act in opposition to self-care guidelines because it suited their personal situation better. It has also been described previously that patients make informed decisions that may not comply with the given recommendation because of a personal cost-benefit analysis.11

Persons with heart failure may well understand what they are supposed to do in relation to their self-care but need help with how to do it.26 This could be offered by the mHealth system. Comorbidities are common in persons with heart failure and may cause problems with following self-care advice,27 but this seemed not to be the case in this study because it was not mentioned by the study participants. This may have been because a greater understanding of symptoms arose through using the mHealth system. It seemed easier for patients to make a connection between the cause and experienced effects of physical symptoms.

The self-care theory used in this study7 suggests that self-care is a process starting with self-care maintenance and leading to self-care management via symptom perception. The persons with heart failure in our study confirmed this by describing self-care management as the result of being adherent and learning to interpret symptoms and signs of deterioration, as well as knowing when and how an adequate reaction should be introduced, implemented, and further evaluated. There is a lack of theoretical framework in many studies developing and evaluating tele-monitoring and eHealth interventions in patients with heart failure. In future research, we recommend that the situation-specific theory of heart failure self-care could be applied as a theoretical framework.

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Limitations

This study has several limitations. A possible selection bias could exist, as the participants in the current study had all been part of a previous trial using the mHealth system. They might have had a positive attitude from the beginning and also agreed to be interviewed. We do not know how the patients who did not take part in the previous randomized controlled trial perform self-care in relation to the situation-specific theory of heart failure self-care. The transferability of the findings to other settings should be considered with caution in qualitative studies, but patient characteristics and the description of the content and the setting may enable a certain degree of transferability.

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Summary

The mHealth system used by those with heart failure was found to be feasible, influenced adherence to self-care, and gave support in maintaining self-care. Technical difficulties with the scale and tablet were considered a barrier but could be overcome by easy access to technical support. The use of the mHealth tool influenced both physical and psychological symptom perception. The mHealth tool experience influenced the development and use of skills and fostered independence in self-care management. An interaction with healthcare professionals was sometimes needed in combination with the mHealth tool. Experiences in the self-care process of persons with heart failure confirmed that the situation-specific theory of heart failure self-care could be used in the context of mHealth.

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What’s New and Important

  • The mHealth system influenced adherence to self-care and gave support in maintaining self-care in persons with heart failure.
  • “The situation-specific theory of self-care” could be applied in the context of mHealth and self-care.
  • Interaction between persons with heart failure and healthcare professionals in using the mHealth system helped develop skills in self-care management.
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Acknowledgment

We wish to acknowledge the kindness, support, and cooperation of the persons who participated in this study.

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Keywords:

heart failure; self-care; mHealth; qualitative research

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