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1.
Pain Rep ; 9(4): e1174, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38962688

RESUMO

Introduction: Chronic pain affects a wide range of physical and psychological aspects of life for those impacted. Psychosocial treatment approaches may be of support, but outreach is still limited. Objectives: To evaluate the efficacy of EPIO, an evidence-informed, user-centered digital self-management intervention for people with chronic pain, in a 12-month randomized controlled trial. Methods: People living with chronic pain (N = 266) were randomized to the EPIO intervention (n = 132) or a usual-care control group (n = 134). The intervention was delivered in a simple blended care model, and outcome measures collected at baseline, 6 months, and 12 months. Generalized linear models for repeated measures were fitted to compare groups over time. Results: Participants were primarily female (81%), median age 49 years (range 22-78), with heterogeneous pain conditions, and had lived with pain >5 years (77.6%). A mixed linear model with all timepoints included revealed no statistically significant group differences for the primary outcome of pain interference. Significant psychological benefits in favor of the intervention group were however detected for depression (P = 0.022), self-regulatory fatigue (P = 0.024), vitality (P = 0.016), and mental health (P = 0.047). Baseline to 12-month changes showed additional favorable effects for anxiety (between-group mean differences [MDs] = 0.79, P = 0.047), depression (MD = 1.08, P = 0.004), self-regulatory fatigue (MD = 2.42, P = 0.021), pain catastrophizing (MD = 2.62, P = 0.009), and health-related quality of life. Conclusions: The EPIO program aims to improve outreach of evidence-based pain self-management interventions. Findings demonstrate how using EPIO can lead to sustainable psychological change, enhancing mental health and health-related quality of life for people suffering from pain, providing a chance to live well with the pain.

2.
J Med Internet Res ; 25: e47284, 2023 08 25.
Artigo em Inglês | MEDLINE | ID: mdl-37624622

RESUMO

BACKGROUND: Chronic pain conditions involve numerous physical and psychological challenges, and while psychosocial self-management interventions can be of benefit for people living with chronic pain, such in-person treatment is not always accessible. Digital self-management approaches could improve this disparity, potentially bolstering outreach and providing easy, relatively low-cost access to pain self-management interventions. OBJECTIVE: This randomized controlled trial aimed to evaluate the short-term efficacy of EPIO (ie, inspired by the Greek goddess for the soothing of pain, Epione), a digital self-management intervention, for people living with chronic pain. METHODS: Patients (N=266) were randomly assigned to either the EPIO intervention (n=132) or a care-as-usual control group (n=134). Outcome measures included pain interference (Brief Pain Inventory; primary outcome measure), anxiety and depression (Hospital Anxiety and Depression Scale), self-regulatory fatigue (Self-Regulatory Fatigue 18 scale), health-related quality of life (SF-36 Short Form Health Survey), pain catastrophizing (Pain Catastrophizing Scale), and pain acceptance (Chronic Pain Acceptance Questionnaire). Linear regression models used change scores as the dependent variables. RESULTS: The participants were primarily female (210/259, 81.1%), with a median age of 49 (range 22-78) years and a variety of pain conditions. Analyses (n=229) after 3 months revealed no statistically significant changes for the primary outcome of pain interference (P=.84), but significant reductions in the secondary outcomes of depression (mean difference -0.90; P=.03) and self-regulatory fatigue (mean difference -2.76; P=.008) in favor of the intervention group. No other statistically significant changes were observed at 3 months (all P>.05). Participants described EPIO as useful (ie, totally agree or agree; 95/109, 87.2%) and easy to use (101/109, 92.7%), with easily understandable exercises (106/109, 97.2%). CONCLUSIONS: Evidence-informed, user-centered digital pain self-management interventions such as EPIO may have the potential to effectively support self-management and improve psychological functioning in the form of reduced symptoms of depression and improved capacity to regulate thoughts, feelings, and behavior for people living with chronic pain. TRIAL REGISTRATION: ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104.


Assuntos
Dor Crônica , Autogestão , Humanos , Feminino , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Dor Crônica/terapia , Qualidade de Vida , Manejo da Dor , Fadiga
3.
J Med Internet Res ; 25: e43267, 2023 04 12.
Artigo em Inglês | MEDLINE | ID: mdl-37043268

RESUMO

BACKGROUND: With the increasing digitalization in health care, an effective instrument is necessary to assess health care consumers' digital competencies-their "eHealth literacy." The 7-scale eHealth Literacy Questionnaire (eHLQ), based on the theoretically robust eHealth Literacy Framework, has shown strong psychometric properties in Denmark and Australia. OBJECTIVE: The aim of this study was to translate, culturally adapt, and evaluate the psychometric properties of the Swedish version of the eHLQ. METHODS: We followed the Translation Integrity Procedure guidelines to translate and culturally adapt the questionnaire to Swedish using forward and backward translations, review by an expert panel, and cognitive interviewing. The psychometric properties of the Swedish eHLQ were investigated by evaluating its internal consistency (Cronbach α) and a priori-defined factor structure (confirmatory factor analysis). RESULTS: A total of 236 primary health care patients and parents of hospitalized children were included in the validation analysis. The mean age was 48.5 years, and 129 (55%) were women. All 7 eHLQ scales showed good internal consistency, with the Cronbach α ranging from .82 to .92. Single-factor and 7-factor confirmatory factor analysis showed satisfactory model-fit values. With one exception, all items demonstrated satisfactory loadings on their respective factors. CONCLUSIONS: The Swedish eHLQ demonstrated strong psychometric properties. It has the potential as a useful tool for a variety of purposes, including population surveys, intervention evaluations, and eHealth service implementations.


Assuntos
Letramento em Saúde , Telemedicina , Criança , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Letramento em Saúde/métodos , Suécia , Reprodutibilidade dos Testes , Telemedicina/métodos , Inquéritos e Questionários , Psicometria/métodos
4.
Nurs Open ; 10(2): 509-524, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36053815

RESUMO

AIM: The aim of the study was to describe different eHealth literacy domains among parents of children needing paediatric surgery in Sweden, and the correlation between these eHealth literacy domains and parents' socioeconomic factors and demographic characteristics. DESIGN: Descriptive correlational design. METHOD: Thirty-five Swedish-speaking parents participated as a historical control group within an ongoing Swedish clinical trial developing eHealth solutions for families after hospital care; of these, 30 completed the eHealth Literacy Questionnaire and the socioeconomic and demographic questionnaire. RESULTS: Of the seven eHealth literacy domains assessed, parents' strengths lay in those pertaining to their own digital competence, control and safety, while their weakness concerned their motivation to engage with digital services, and their ability to access eHealth platforms that work. Overall, parents presented adequate eHealth literacy. Of the five socioeconomic and demographic variables assessed (i.e. monthly wages, education levels, age, gender and residency), monthly wages correlated the strongest, and positively, with the seven eHealth literacy domains.


Assuntos
Letramento em Saúde , Telemedicina , Humanos , Criança , Suécia , Estudos Transversais , Pais , Fatores Socioeconômicos , Demografia
5.
BMC Health Serv Res ; 22(1): 577, 2022 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-35488295

RESUMO

BACKGROUND: Chronic pain conditions entail significant personal and societal burdens and improved outreach of evidence-based pain self-management programs are needed. Digital cognitive-behavioral self-management interventions have shown promise. However, evidence is still scarce and several challenges with such interventions for chronic pain exist. Exploring patients' experiences and engagement with digital interventions may be an essential step towards developing meaningful digital self-management interventions for those living with chronic pain. OBJECTIVES: This study aimed to gain insight into the experiences of people with chronic pain when engaging with EPIO, an application (app)-based cognitive-behavioral pain self-management intervention program. METHODS: Participants (N = 50) living with chronic pain received access to the EPIO intervention in a feasibility pilot-study for 3 months. During this time, all participants received a follow-up phone call at 2-3 weeks, and a subsample (n = 15) also participated in individual semi-structured interviews after 3 months. A qualitative design was used and thematic analysis was employed aiming to capture participants' experiences when engaging with the EPIO intervention program. RESULTS: Findings identifying program-related experiences and engagement were organized into three main topics, each with three sub-themes: (1) Engaging with EPIO; motivation to learn, fostering joy and enthusiasm, and helpful reminders and personalization, (2) Coping with pain in everyday life; awareness, practice and using EPIO in everyday life, and (3) The value of engaging with the EPIO program; EPIO - a friend, making peace with the presence of pain, and fostering communication and social support. CONCLUSIONS: This qualitative study explored participants' experiences and engagement with EPIO, a digital self-management intervention program for people living with chronic pain. Findings identified valued aspects related to motivation for engagement, and showed how such a program may be incorporated into daily life, and encourage a sense of acceptance, social support and relatedness. The findings highlight vital components for facilitating digital program engagement and use in support of self-management for people living with chronic pain. TRIAL REGISTRATION: ClinicalTrials.gov NCT03705104 .


Assuntos
Dor Crônica , Autogestão , Dor Crônica/terapia , Humanos , Manejo da Dor , Projetos Piloto , Pesquisa Qualitativa
6.
BMC Health Serv Res ; 21(1): 275, 2021 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-33766028

RESUMO

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. TRIAL REGISTRATION: ClinicalTrials.gov : NCT03705104.


Assuntos
Dor Crônica , Autogestão , Atitude , Dor Crônica/terapia , Pessoal de Saúde , Humanos , Manejo da Dor , Pesquisa Qualitativa
7.
Patient Educ Couns ; 104(5): 1030-1048, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33583649

RESUMO

OBJECTIVES: To provide overview of research on training interventions for healthcare providers aimed at promoting competencies in delivering group-based patient education. METHODS: A systematic literature search identified relevant studies. Data was extracted on training details, study design, outcomes and experiences. Results were summarized and qualitative data analyzed using content analysis. RESULTS: Twenty-seven studies exploring various training interventions were included. Ten studies used qualitative methods, eight quantitative and nine mixed methods. Use of a comparison group, validated instruments and follow-up measures was rare. Healthcare providers' reactions to training were mostly positive. Several studies indicated positive short-term effects on self-efficacy and knowledge. Results on observed skills and patient outcomes were inconclusive. Results on healthcare providers' experience of delivery of group-based patient education following training were categorized into 1) Benefits of training interventions, 2) Barriers to implementation and 3) Delivery support. CONCLUSIONS: Further evaluation of training for healthcare providers delivering group-based patient education is needed before conclusions on training efficacy can be drawn. The results indicate an expanding research field still in maturation. PRACTICE IMPLICATIONS: Efficacy studies evaluating theoretically grounded training with clear attention on group facilitation and follow-up support are needed. Inclusion of validated instruments and long-term outcomes is encouraged.


Assuntos
Pessoal de Saúde , Educação de Pacientes como Assunto , Competência Clínica , Pessoal de Saúde/educação , Humanos
8.
Artigo em Inglês | MEDLINE | ID: mdl-33260688

RESUMO

Parents of children with a congenital heart defect needing complex heart surgery are at high risk of developing health problems. One can assume that parents whose child undergoes heart surgery abroad will undoubtably face added and unique stressors and health vulnerabilities. The aim of this qualitative study was to explore the transition experiences of parents of children who underwent a complex heart surgery abroad as newborns 1-5 years ago. The qualitative content analysis methodology by Graneheim and Lundman was used. A purposive sample of twelve parents, whose child had undergone a heart surgery abroad, participated in face-to-face, semi-structured interviews. Interviews were transcribed and analyzed using inductive qualitative content analysis. The overarching theme of "living with the memories" emerged from parents' experiences, emphasizing the long-lasting impact this stressful event had on their lives. These experiences were characterized by four main categories: (1) being in an unknown situation; (2) feeling connected; (3) wishing to be accepted; and (4) finding closure. The findings show that the transition of having a newborn child undergo heart surgery abroad superimposed on the expected parenthood. That parents need to feel connected and included as legitimate clients was highlighted in their stories of experienced vulnerabilities. The results highlight the need for interdisciplinary teams to support these vulnerable families, particularly with follow-up care.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Saúde da Família , Cardiopatias Congênitas , Família , Feminino , Cardiopatias Congênitas/cirurgia , Humanos , Recém-Nascido , Masculino , Memória , Relações Pais-Filho , Pesquisa Qualitativa
9.
JMIR Form Res ; 4(3): e16831, 2020 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-32130126

RESUMO

BACKGROUND: Supporting patient engagement and empowerment is increasingly seen as essential in providing person-centered health care to people with chronic illness. Mobile apps helping patients reflect on their concerns as preparation for consultations with their health care providers can have beneficial effects on the consultation quality. However, apps focusing on empowerment and personal strengths are still scarce. OBJECTIVE: This study aimed to (1) develop a mobile app to support patients with rheumatic diseases in reflecting on their strengths in preparation for consultations with health care providers and (2) explore patients' perceived usability of the app in a nonclinical test setting. METHODS: A prototype app was developed based on input from patients and health care providers, as reported in previous studies. The app was designed for use in self-management support settings aiming to promote awareness of strengths and to focus attention on strengths in the patient-health care provider dialogue. The features included in the prototype were as follows: (1) introduction to the topic of strengths, (2) list of examples of strengths to promote reflection and registration of own strengths, (3) summary of registered strengths, (4) value-based goal setting, (5) linking of strengths to goals, (6) summary of all registrations, and (7) options to share summary digitally or as a print version. In this study, the app was refined through a formative evaluation with patients and health care providers recruited from a specialized rheumatology hospital unit. Patients' perceptions of the app's usability were explored in a test setting with self-report measurements and semistructured interviews. The interviews were audiotaped, transcribed, and analyzed with directed content analysis. Data from questionnaires were analyzed with descriptive statistics. RESULTS: Developmental and formative evaluation included 18 patients and 7 health care providers. The evaluation resulted in minor adjustments to the prototype but no major changes in features. The usability testing included 12 patients. All participants found the usability acceptable; the median score on the System Usability Scale was 86.3 (range 70-100). All reported that it was meaningful and relevant to use the app. Out of 12 participants, 9 (75%) reported becoming more aware of their own strengths by using the app; 1 (8%) disagreed and 2 (17%) provided a neutral response. The results on the goal-related feature were mixed, with half of the patients finding it useful to link strengths to concrete goals. A statistically significant positive change from pre- to postintervention was identified on measures of self-efficacy and negative emotions. CONCLUSIONS: In this formative evaluation of a mobile app to promote patients' reflections on their strengths, patients perceived the app as meaningful and supporting awareness. The results suggest the usefulness of building in functionality to support use of strengths and goal attainment. Further studies on efficacy and usability in a clinical setting, including health care providers, are needed.

10.
J Med Internet Res ; 22(1): e15889, 2020 01 21.
Artigo em Inglês | MEDLINE | ID: mdl-31961331

RESUMO

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/NCT03705104.


Assuntos
Manejo da Dor/métodos , Avaliação de Programas e Projetos de Saúde/métodos , Telemedicina/métodos , Doença Crônica , Dor Crônica , Humanos , Aplicativos Móveis , Resultado do Tratamento
11.
J Med Internet Res ; 21(9): e14255, 2019 09 27.
Artigo em Inglês | MEDLINE | ID: mdl-31573934

RESUMO

BACKGROUND: There is growing evidence of the positive effects of electronic health (eHealth) interventions for patients with chronic illness, but implementation of such interventions into practice is challenging. Implementation strategies that potentially impact implementation outcomes and implementation success have been identified. Which strategies are actually used in the implementation of eHealth interventions for patients with chronic illness and which ones are the most effective is unclear. OBJECTIVE: This systematic realist review aimed to summarize evidence from empirical studies regarding (1) which implementation strategies are used when implementing eHealth interventions for patients with chronic illnesses living at home, (2) implementation outcomes, and (3) the relationship between implementation strategies, implementation outcomes, and degree of implementation success. METHODS: A systematic literature search was performed in the electronic databases MEDLINE, Embase, PsycINFO, Scopus, Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library. Studies were included if they described implementation strategies used to support the integration of eHealth interventions into practice. Implementation strategies were categorized according to 9 categories defined by the Expert Recommendations for Implementing Change project: (1) engage consumers, (2) use evaluative and iterative strategies, (3) change infrastructure, (4) adapt and tailor to the context, (5) develop stakeholder interrelationships, (6) use financial strategies, (7) support clinicians, (8) provide interactive assistance, and (9) train and educate stakeholders. Implementation outcomes were extracted according to the implementation outcome framework by Proctor and colleagues: (1) acceptability, (2) adoption, (3) appropriateness, (4) cost, (5) feasibility, (6) fidelity, (7) penetration, and (8) sustainability. Implementation success was extracted according to the study authors' own evaluation of implementation success in relation to the used implementation strategies. RESULTS: The implementation strategies management support and engagement, internal and external facilitation, training, and audit and feedback were directly related to implementation success in several studies. No clear relationship was found between the number of implementation strategies used and implementation success. CONCLUSIONS: This is the first review examining implementation strategies, implementation outcomes, and implementation success of studies reporting the implementation of eHealth programs for patients with chronic illnesses living at home. The review indicates that internal and external facilitation, audit and feedback, management support, and training of clinicians are of importance for eHealth implementation. The review also points to the lack of eHealth studies that report implementation strategies in a comprehensive way and highlights the need to design robust studies focusing on implementation strategies in the future. TRIAL REGISTRATION: PROSPERO CRD42018085539; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=85539.


Assuntos
Doença Crônica/terapia , Implementação de Plano de Saúde/métodos , Telemedicina/métodos , Humanos
12.
J Med Internet Res ; 21(4): e13205, 2019 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-30877780

RESUMO

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.


Assuntos
Manejo da Dor/métodos , Pesquisa Qualitativa , Telemedicina/métodos , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Resultado do Tratamento , Adulto Jovem
13.
Pain ; 159(10): 2035-2049, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29905654

RESUMO

There is a scarcity of work examining the relationship between culture and pain-related caregiver behaviors. Moreover, no pediatric pain studies have examined the relationship between caregiver cultural values and pain-related caregiver behaviors nor discern if this process is mediated by caregiver parenting styles and moderated by ecosocial context. Based on cross-cultural developmental theories, this study hypothesized that ecosocial context would moderate the relationship between cultural values, parenting styles, and pain-related caregiver behaviors; and that parenting styles mediate the effect of cultural values on pain-related caregiver behaviors. A cross-cultural survey design was employed using a convenience sample of 547 caregivers of 6 to 12 year olds living in Canada (n = 183), Iceland (n = 184), and Thailand (n = 180). Multigroup structural equation modeling showed that ecosocial context did not affect which cultural model of parenting the caregiver adopted. Parenting styles mediated the relationship between cultural values and pain-related caregiver behavior. Vertical/horizontal individualism, collectivism, and authoritative- and authoritarian-parenting styles positively predicted solicitousness. Vertical individualism and authoritarian-parenting style positively predicted discouraging behavior, whereas other predictors did not. The findings support the sociocommunication model of children's pain by showing that cultural context does affect parents' behaviors. They also corroborate with others' claims of solicitousness universality in a pediatric pain context. However, solicitousness may have different cultural meanings among individuals and may be used in conjunction with discouraging behavior. The findings from this study have implications for the theory development about culture and pediatric pain, but do not provide specific clinical recommendations.


Assuntos
Comparação Transcultural , Dor/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Canadá , Cuidadores/psicologia , Criança , Feminino , Humanos , Islândia , Masculino , Dor/etnologia , Tailândia
14.
Health Expect ; 21(4): 787-795, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29478260

RESUMO

BACKGROUND: Self-management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person-centred approaches into health care. OBJECTIVE: To explore what people with chronic illness describe as their strengths relevant to their health and well-being. SETTING AND PARTICIPANTS: Thirty-nine participants (11 men) from 4 outpatient self-management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis. RESULTS: A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self-management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health-care providers. Self-management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help. DISCUSSION AND CONCLUSION: The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person-centred approaches into health care.


Assuntos
Adaptação Psicológica , Doença Crônica/psicologia , Poder Psicológico , Autocuidado/psicologia , Apoio Social , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
15.
JMIR Form Res ; 2(1): e10774, 2018 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-30684404

RESUMO

BACKGROUND: Emerging research from psychology and the bio-behavioral sciences recognizes the importance of supporting patients to mobilize their personal strengths to live well with chronic illness. Positive technology and positive computing could be used as underlying design approaches to guide design and development of new technology-based interventions for this user group that support mobilizing their personal strengths. OBJECTIVE: A codesigning workshop was organized with the aim to explore user requirements and ideas for how technology can be used to help people with chronic illness activate their personal strengths in managing their everyday challenges. METHODS: Thirty-five participants from diverse backgrounds (patients, health care providers, designers, software developers, and researchers) participated. The workshop combined principles of (1) participatory and service design to enable meaningful participation and collaboration of different stakeholders and (2) an appreciative inquiry methodology to shift participants' attention to positive traits, values, and aspects that are meaningful and life-giving and stimulate participants' creativity, engagement, and collaboration. Utilizing these principles, participants were engaged in group activities to develop ideas for strengths-supportive tools. Each group consisted of 3-8 participants with different backgrounds. All group work was analysed using thematic analyses. RESULTS: Participants were highly engaged in all activities and reported a wide variety of requirements and ideas, including more than 150 personal strength examples, more than 100 everyday challenges that could be addressed by using personal strengths, and a wide range of functionality requirements (eg, social support, strength awareness and reflection, and coping strategies). 6 concepts for strength-supportive tools were created. These included the following: a mobile app to support a person to store, reflect on, and mobilize one's strengths (Strengths treasure chest app); "empathy glasses" enabling a person to see a situation from another person's perspective (Empathy Simulator); and a mobile app allowing a person to receive supportive messages from close people in a safe user-controlled environment (Cheering squad app). Suggested design elements for making the tools engaging included: metaphors (eg, trees, treasure island), visualization techniques (eg, dashboards, color coding), and multimedia (eg, graphics). Maintaining a positive focus throughout the tool was an important requirement, especially for feedback and framing of content. CONCLUSIONS: Combining participatory, service design, and appreciative inquiry methods were highly useful to engage participants in creating innovative ideas. Building on peoples' core values and positive experiences empowered the participants to expand their horizons from addressing problems and symptoms, which is a very common approach in health care today, to focusing on their capacities and that which is possible, despite their chronic illness. The ideas and user requirements, combined with insights from relevant theories (eg, positive technology, self-management) and evidence from the related literature, are critical to guide the development of future more personalized and strengths-focused self-management tools.

16.
JMIR Res Protoc ; 5(3): e175, 2016 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-27558951

RESUMO

BACKGROUND: An increasing number of research studies in the psychological and biobehavioral sciences support incorporating patients' personal strengths into illness management as a way to empower and activate the patients, thus improving their health and well-being. However, lack of attention to patients' personal strengths is still reported in patient-provider communication. Information technology (IT) has great potential to support strengths-based patient-provider communication and collaboration, but knowledge about the users' requirements and preferences is inadequate. OBJECTIVE: This study explored the aspirations and requirements of patients with chronic conditions concerning IT tools that could help increase their awareness of their own personal strengths and resources, and support discussion of these assets in consultations with health care providers. METHODS: We included patients with different chronic conditions (chronic pain, morbid obesity, and chronic obstructive pulmonary disease) and used various participatory research methods to gain insight into the participants' needs, values, and opinions, and the contexts in which they felt strengths-based IT tools could be used. RESULTS: Participants were positive toward using technology to support them in identifying and discussing their personal strengths in clinical consultation, but also underlined the importance of fitting it to their specific requirements and the right contexts of use. Participants recommended that technology be designed for use in preconsultation settings (eg, at home) and felt that it should support them in both identifying strengths and in finding out new ways how strengths can be used to attain personal health-related goals. Participants advocated use of technology to support advance preparation for consultations and empower them to take a more active role. IT tools were suggested to be potentially useful in specific contexts, including individual or group consultations with health care providers (physician, nurse, specialist, care team) in clinical consultations but also outside health care settings (eg, as a part of a self-management program). Participants' requirements for functionality and design include, among others: providing examples of strengths reported by other patients with chronic conditions, along with an option to extend the list with personal examples; giving an option to briefly summarize health-related history; using intuitive, easy-to-use but also engaging user interface design. Additionally, the findings are exemplified with a description of a low-fidelity paper prototype of a strengths-based tool, developed with participants in this study. CONCLUSIONS: Users requirements for IT support of a strengths-based approach to health care appear feasible. The presented findings reflect patients' values and lists potential contexts where they feel that technology could facilitate meaningful patient-provider communication that focuses not just on symptoms and problems, but also takes into account patients' strengths and resources. The findings can be used to inform further development of IT tools for use in clinical consultations.

17.
Int J Biometeorol ; 58(7): 1451-7, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24132549

RESUMO

The aim of this study was to examine the association between fibromyalgia pain and weather, and to investigate whether psychosocial factors influence this relationship. Women with chronic widespread pain/fibromyalgia (N = 50) enrolled in a larger study, were recruited from a 4-week inpatient rehabilitation program in Norway ( 2009-2010), and reported their pain and psychological factors up to three times per day (morning, afternoon, evening) for 5 weeks. These ratings were then related to the official local weather parameters. Barometric pressure recorded simultaneously impacted pain significantly while temperature, relative humidity, and solar flux did not. No psychological variables influenced the weather-pain interaction. No weather parameter predicted change in the subsequent pain measures. The magnitude of the inverse association between pain and barometric pressure was very small, and none of the psychological variables studied influenced the association between pain and barometric pressure. All in all, the evidence for a strong weather-pain association in fibromyalgia seems limited at best.


Assuntos
Pressão Atmosférica , Dor Crônica/psicologia , Fibromialgia/psicologia , Adulto , Dor Crônica/epidemiologia , Dor Crônica/fisiopatologia , Feminino , Fibromialgia/epidemiologia , Fibromialgia/fisiopatologia , Humanos , Umidade , Pessoa de Meia-Idade , Noruega/epidemiologia , Luz Solar , Temperatura , Tempo (Meteorologia)
18.
J Med Internet Res ; 15(3): e72, 2013 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-23538392

RESUMO

BACKGROUND: Internet-based interventions are increasingly used to support self-management of individuals with chronic illnesses. Web-based interventions may also be effective in enhancing self-management for individuals with chronic pain, but little is known about long-term effects. Research on Web-based interventions to support self-management following participation in pain management programs is limited. OBJECTIVE: The aim is to examine the long-term effects of a 4-week smartphone-intervention with diaries and therapist-written feedback following an inpatient chronic pain rehabilitation program, previously found to be effective at short-term and 5-month follow-ups. METHODS: 140 women with chronic widespread pain, participating in a 4-week inpatient rehabilitation program, were randomized into two groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of one face-to-face individual session and 4 weeks of written communication via a smartphone, consisting of three diaries daily to elicit pain-related thoughts, feelings, and activities, as well as daily personalized written feedback based on cognitive behavioral principles from a therapist. Both groups were given access to an informational website to promote constructive self-management. Outcomes were measured with self-reported paper-and-pencil format questionnaires with catastrophizing as the primary outcome measure. Secondary outcomes included daily functioning and symptom levels, acceptance of pain, and emotional distress. RESULTS: By the 11-month follow-up, the favorable between-group differences previously reported post-intervention and at 5-month follow-up on catastrophizing, acceptance, functioning, and symptom level were no longer evident (P>.10). However, there was more improvement in catastrophizing scores during the follow-up period in the intervention group (M=-2.36, SD 8.41) compared to the control group (M=.40, SD 7.20), P=.045. Also, per protocol within-group analysis showed a small positive effect (Cohen's d=.33) on catastrophizing in the intervention group (P=.04) and no change in the control group from the smartphone intervention baseline to 11-month follow-up. A positive effect (Cohen's d=.73) on acceptance was found within the intervention group (P<.001) but not in the control group. Small to large negative effects were found within the control group on functioning and symptom levels, emotional distress, and fatigue (P=.05) from the intervention baseline to the 11-month follow-up. CONCLUSION: The long-term results of this randomized trial are ambiguous. No significant between-group effect was found on the study variables at 11-month follow-up. However, the within-group analyses, comparing the baseline for the smartphone intervention to the 11-month data, indicated changes in the desired direction in catastrophizing and acceptance in the intervention group but not within the control group. This study provides modest evidence supporting the long-term effect of the intervention. TRIAL REGISTRATION: Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6FF7KUXo0).


Assuntos
Telefone Celular , Microcomputadores , Manejo da Dor/métodos , Dor/fisiopatologia , Feminino , Seguimentos , Humanos
19.
Patient Educ Couns ; 93(3): 451-8, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23433735

RESUMO

OBJECTIVE: Chronic illness places high demands on patients. Interventions supporting self-management and providing personalized feedback might help patients to gain new perspectives and enhance use of constructive self-management strategies. We developed three comparable web-based CBT-grounded interventions including e-diaries and feedback delivered through PDAs/smartphones. The feasibility and efficacy of these interventions have been investigated for patients with irritable bowel syndrome (in an RCT), chronic widespread pain (RCT) and type 2 diabetes (feasibility study). METHODS: This is a descriptive study that summarizes the content, feasibility and efficacy of the interventions and discusses issues relevant for implementing this type of web-based therapeutic interventions in clinical practice. RESULTS: The web-based interventions appear feasible, acceptable and supportive. In a short and midterm time frame, the interventions promote self-management. CONCLUSION: Booster sessions may be needed for prolonged effects. Given the physical and mental symptoms of the patients under study and the nature of the intervention, providers who deliver the feedback need a health care background and training in this specific way of counseling. PRACTICE IMPLICATIONS: The results of the three studies suggest that personalized web-based interventions are effective and have the potential to support self-management in daily healthcare. Studies concerning clinical significance and implementation are needed.


Assuntos
Telefone Celular , Doença Crônica/psicologia , Retroalimentação , Internet , Autocuidado/métodos , Doença Crônica/terapia , Dor Crônica/psicologia , Dor Crônica/terapia , Diabetes Mellitus Tipo 2/psicologia , Diabetes Mellitus Tipo 2/terapia , Estudos de Viabilidade , Feminino , Humanos , Síndrome do Intestino Irritável/psicologia , Síndrome do Intestino Irritável/terapia , Masculino , Registros , Inquéritos e Questionários , Telemedicina
20.
J Med Internet Res ; 15(1): e5, 2013 Jan 07.
Artigo em Inglês | MEDLINE | ID: mdl-23291270

RESUMO

BACKGROUND: Internet-based interventions using cognitive behavioral approaches can be effective in promoting self-management of chronic pain conditions. Web-based programs delivered via smartphones are increasingly used to support the self-management of various health disorders, but research on smartphone interventions for persons with chronic pain is limited. OBJECTIVE: The aim of this trial was to study the efficacy of a 4-week smartphone-delivered intervention with written diaries and therapist feedback following an inpatient chronic pain rehabilitation program. METHODS: A total of 140 women with chronic widespread pain who participated in a 4-week inpatient rehabilitation program were randomized into 2 groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of 1 face-to-face session and 4 weeks of written communication via a smartphone. Participants received 3 smartphone diary entries daily to support their awareness of and reflection on pain-related thoughts, feelings, and activities. The registered diaries were immediately available to a therapist who submitted personalized written feedback daily based on cognitive behavioral principles. Both groups were given access to a noninteractive website after discharge to promote constructive self-management. Outcomes were measured with self-reported questionnaires. The primary outcome measure of catastrophizing was determined using the pain catastrophizing scale (score range 0-52). Secondary outcomes included acceptance of pain, emotional distress, functioning, and symptom levels. RESULTS: Of the 140 participants, 112 completed the study: 48 in the intervention group and 64 in the control group. Immediately after the intervention period, the intervention group reported less catastrophizing (mean 9.20, SD 5.85) than the control group (mean 15.71, SD 9.11, P<.001), yielding a large effect size (Cohen's d=0.87) for study completers. At 5-month follow-up, the between-group effect sizes remained moderate for catastrophizing (Cohen's d=0.74, P=.003), acceptance of pain (Cohen's d=0.54, P=.02), and functioning and symptom levels (Cohen's d=0.75, P=.001). CONCLUSIONS: The results suggest that a smartphone-delivered intervention with diaries and personalized feedback can reduce catastrophizing and prevent increases in functional impairment and symptom levels in women with chronic widespread pain following inpatient rehabilitation. TRIAL REGISTRATION: Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6DUejLpPY).


Assuntos
Telefone Celular , Dor Crônica/terapia , Internet , Telemedicina/métodos , Adulto , Catastrofização/prevenção & controle , Catastrofização/psicologia , Catastrofização/terapia , Dor Crônica/fisiopatologia , Dor Crônica/psicologia , Terapia Cognitivo-Comportamental/métodos , Retroalimentação Psicológica , Feminino , Humanos , Prontuários Médicos , Pessoa de Meia-Idade , Modelos Psicológicos , Autocuidado , Inquéritos e Questionários
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