Skriveterapi for ektefeller til personer med demens i tidlig sykdomsfase

Denne studien retter fokus på ektefeller til personer med demenssykdom i tidlig sykdomsfase, deres erfaringer og behov i den livssituasjonen de er i, knyttet til implementeringen av et skrivetiltak, basert på ekspressiv skriving som metode. Det eksisterer lite forskning om pårørendes opplevelse av den tidligste sykdomsfasen, og hvordan man kan legge til rette for en best mulig tilpasning og mestring for denne målgruppen. Andre studier har vist at tidlige intervensjoner og tiltak, særlig for å styrke pårørendes muligheter for å leve opp til forventninger og idealer om egen mestring, er viktig for å fremme en bedre tilpasning i det videre sykdomsforløpet. Dette masterprosjektet har tatt for seg hvordan ektefeller kan nyttiggjøre seg ekspressiv skriving i en tidlig sykdomsfase. Sju deltakere ble inkludert i studien, hvorav fem gjennomførte skriveopplegget på fire uker. Semistrukturerte intervjuer ble gjennomført både før og etter, og oppfølging foregikk over telefon i løpet av perioden. For å svare på hvordan ektefellene har nyttiggjort seg tiltaket har jeg først undersøkt kjennetegn ved konteksten som tiltaket skal inn i, for så å se på hvordan deltakerne har tatt i bruk skrivetiltaket sett i sammenheng med den enkeltes hverdagsutfordringer, og videre hvilken verdi deltakerne selv har tillagt tiltaket. Resultatene viser at ekspressiv skriving kan være et nyttig verktøy for denne målgruppen, særlig knyttet til å gi 1) økt innsikt i og forståelse av egen rolle og håndtering av livssituasjon, 2) en arena for utblåsning, 3) oversikt og perspektiv på egne bekymringer, og 4) en lavere terskel for å snakke om problemer og hendelser med andre. Gjennomgående rapporteres en økt tro på egen mestring og evne til å påvirke og håndtere situasjoner

A human-centered and evidence-informed development process of EPIO; An eHealth selfmanagement intervention for people living with chronic pain

Chronic pain conditions are common, complex and difficult to manage, affecting as much as 30% of the Norwegian adult population. Interdisciplinary care, including psychological self-management treatment have been recommended, however, the availability of such treatments remains scarce, and the need for alternative ways of distributing such care is evident. A growing body of research points to the potential of eHealth interventions in chronic pain management. A number of challenges have been associated with existing solutions however, including lack of evidence-based content and involvement of users and health care providers in the development process. The primary objective of this dissertation project was therefore to design and develop a human-centered and evidence-informed eHealth intervention to support self-management of chronic pain. Utilizing a qualitative, explorative, co-creative and iterative research and development method, this dissertation included an extensive exploration of how an eHealth intervention could be designed and developed to meet the needs and requirements of people living with chronic pain. Including a broad range of stakeholders (e.g., patients, spouses, health care providers, specialists, IT-developers, designer) and a variety of research and development methods (i.e., interviews, observations, co-creative workshops, usability testing, and intervention content and software development), the pain self-management intervention EPIO was developed. This dissertation offers a comprehensive and step-wise example of how to design and develop a human-centered and evidence-informed eHealth intervention to support self-management for people living with chronic pain. Aiming to address identified challenges associated with existing eHealth pain self-management solutions, this project illustrates how an eHealth intervention could be developed to best support the needs and challenges of users in a potentially effective, meaningful and useful way

Health care providers' experiences of pain management and attitudes towards digitally supported self-management interventions for chronic pain: a qualitative study

Background: Chronic pain constitutes a significant burden for the individuals affected, and is a frequent reason why patients seek health care services. While in-person psychosocial interventions can be of support to people living with chronic pain, such interventions are not always accessible. eHealth interventions may provide greater accessibility, but the evidence and use of digital self-management solutions for chronic pain are still limited and the lack of health care provider input in the development process of such solutions a concern. Therefore, the aim of the current study was to investigate health care providers’ experiences of treating patients with chronic pain, their attitudes towards, and use of, digital solutions in pain management, and their suggestions for content and design elements for a potential digital pain self-management intervention. Methods: Twelve health care providers representing a variety of health care disciplines participated in semi-structured interviews. The interviews were analyzed using thematic analysis. Results: The material was analyzed into three main themes: [1] Patients with chronic pain and their current use of the health care services, [2] Health care providers’ own motivation and impression of patient prerequisites for use of digital self-management interventions, and [3] Suggestions for content and design elements in a digital self-management intervention for people living with chronic pain. The challenges faced by patients living with chronic pain were described as numerous. Despite interest and positive attitudes, few of the health care providers had used or recommended eHealth solutions to their patients. A range of potential content and functionality elements were identified, including aspects of motivation and engagement and providers also emphasized the importance of easy access and positive, personal content to support existing treatment. Conclusions: This study offers insights into health care providers’ considerations for the potential of digital self-management interventions supporting patients living with chronic pain. Findings indicate the need for change and a more comprehensive treatment approach to pain management. eHealth solutions may contribute to such change, and providers pointed to a need for health care provider involvement, timely support and follow-up as important factors for integrating digital pain self-management interventions into clinical care

Patients' Needs and Requirements for eHealth Pain Management Interventions: Qualitative Study

BACKGROUND: A growing body of evidence supports the potential effectiveness of electronic health (eHealth) interventions in managing chronic pain. However, research on the needs and preferences of patients with chronic pain in relation to eHealth interventions is scarce. Eliciting user input in the development of eHealth interventions may be a crucial step toward developing meaningful interventions for patients for potentially improving treatment outcomes. OBJECTIVE: This study aimed to explore the experiences of patients with chronic pain with regard to information and communication technology, understand how an eHealth intervention can support the everyday needs and challenges of patients with chronic pain, and identify possible facilitators and barriers for patients' use of an eHealth pain management intervention. METHODS: Twenty patients living with chronic pain and five spouses participated in individual interviews. Semistructured interview guides were used to explore participants' needs, experiences, and challenges in daily life as well as their information and communication technology experiences and preferences for eHealth support interventions. Spouses were recruited and interviewed to gain additional insight into the patients' needs. The study used qualitative thematic analysis. RESULTS: The participants were generally experienced technology users and reported using apps regularly. They were mainly in favor of using an eHealth self-management intervention for chronic pain and considered it a potentially acceptable way of gathering knowledge and support for pain management. The participants expressed the need for obtaining more information and knowledge, establishing a better balance in everyday life, and receiving support for improving communication and social participation. They provided suggestions for the eHealth intervention content and functionality to address these needs. Accessibility, personalization, and usability were emphasized as important elements for an eHealth support tool. The participants described an ideal eHealth intervention as one that could be used for support and distraction from pain, at any time or in any situation, regardless of varying pain intensity and concentration capacity. CONCLUSIONS: This study provides insight into user preferences for eHealth interventions aiming to address self-management for chronic pain. Participants highlighted important factors to be considered when designing and developing eHealth interventions for self-management of chronic pain, illustrating the importance and benefit of including users in the development of eHealth interventions. TRIAL REGISTRATION: ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104

Patients'needs and requirements for ehealth pain management interventions: Qualitative study

Background: A growing body of evidence supports the potential effectiveness of electronic health (eHealth) interventions in managing chronic pain. However, research on the needs and preferences of patients with chronic pain in relation to eHealth interventions is scarce. Eliciting user input in the development of eHealth interventions may be a crucial step toward developing meaningful interventions for patients for potentially improving treatment outcomes. Objective: This study aimed to explore the experiences of patients with chronic pain with regard to information and communication technology, understand how an eHealth intervention can support the everyday needs and challenges of patients with chronic pain, and identify possible facilitators and barriers for patients’ use of an eHealth pain management intervention. Methods: Twenty patients living with chronic pain and five spouses participated in individual interviews. Semistructured interview guides were used to explore participants’ needs, experiences, and challenges in daily life as well as their information and communication technology experiences and preferences for eHealth support interventions. Spouses were recruited and interviewed to gain additional insight into the patients’ needs. The study used qualitative thematic analysis. Results: The participants were generally experienced technology users and reported using apps regularly. They were mainly in favor of using an eHealth self-management intervention for chronic pain and considered it a potentially acceptable way of gathering knowledge and support for pain management. The participants expressed the need for obtaining more information and knowledge, establishing a better balance in everyday life, and receiving support for improving communication and social participation. They provided suggestions for the eHealth intervention content and functionality to address these needs. Accessibility, personalization, and usability were emphasized as important elements for an eHealth support tool. The participants described an ideal eHealth intervention as one that could be used for support and distraction from pain, at any time or in any situation, regardless of varying pain intensity and concentration capacity. Conclusions: This study provides insight into user preferences for eHealth interventions aiming to address self-management for chronic pain. Participants highlighted important factors to be considered when designing and developing eHealth interventions for self-management of chronic pain, illustrating the importance and benefit of including users in the development of eHealth interventions

A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO

Background Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users’ acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. Objective The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. Methods The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. Results Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. Conclusions The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain. Trial Registration ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT0370510

A user-centered approach to an evidence-based electronic health pain management intervention for people with chronic pain: design and development of EPIO

Background: Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users’ acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. Objective: The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. Methods: The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. Results: Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. Conclusions: The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain

A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO

Background: Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users’ acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. Objective: The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. Methods: The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches