Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.

Purpose: Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people's experiences with treatment burden and their coping strategies. Patients and Methods: The body mapping method was employed, in which a life-sized outline of someone's body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers. Results: The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist. Conclusion: Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.

Self-management of social well-being in a cross-sectional study among community-dwelling older adults: The added value of digital participation.

BACKGROUND: This study aimed to examine associations between self-management abilities and digital participation among community-dwelling older adults with chronic conditions in the Netherlands. METHODS: The study utilized a cross-sectional design. Community-dwelling older adults were sampled from a Dutch nationwide panel study performed in October and November of 2019. We selected all adults of 65 years and above who had one or more chronic diseases (n = 1,656). Self-management was measured by six abilities (e.g., investing in resources for long-term benefits and taking care of a variety of resources), whereas digital participation was estimated with the frequency of four social internet uses (e.g., using social network websites and calling digitally). RESULTS: When predicting self-management abilities from digital participation, hierarchical multiple regression analysis determined statistically significant and positive relationships, in particular for e-mailing (ß = 0.21; p < .001) and meeting new people online (ß = 0.07; p < .05). Correlation analyses showed that highest associations were found between internet usage and the self-management abilities 'taking initiative' (r = .23; p < .001) and 'being self-efficacious' (r = .21; p < .001). Moreover, the study confirmed that higher age (ß = -0.13; p < .001) and increased severity of disability (ß = -0.12; p < .01) negatively impact abilities for self-management. CONCLUSIONS: These findings suggest that internet usage and self-management abilities are positively related in the older adult population. Further research should be undertaken to examine the links between self-management abilities and digital participation more closely.

Lives on hold: A qualitative study of young refugees' resilience strategies.

Although the literature on positive adjustment following traumatic events is growing, only a few studies have examined this phenomenon in young refugees. Using the social-ecological framework, the aim of this study was to identify factors and processes that according to young refugees promote their resilience. A total of 16 treatment-seeking refugees aged 13-21 years, living in the Netherlands, were interviewed. Data analysis revealed four resilience strategies: (1) acting autonomously, (2) performing at school, (3) perceiving support from peers and parents, and (4) participating in the new society. These strategies interacted with one another and demonstrated the interrelatedness between individuals and their social context. Having to wait long for a residence permit and being older appeared to negatively influence participants' resilience strategies. These findings suggest that resilience refers to a dynamic process that is context and time specific.

A realist review: what do nurse-led self-management interventions achieve for outpatients with a chronic condition?

AIM: The aim of this study was to examine how nurse-led interventions that support self-management of outpatients with chronic conditions work and in what contexts they work successfully. BACKGROUND: Self-management could be directed at goals such as quality of life, adherence or patients' empowerment. Self-management support is an increasingly important task of nurses. Many nurse-led interventions have been developed but it is not clear how these actually help improve patients' self-management capabilities. DESIGN: Realist review. DATA SOURCES: Primary research studies on self-management support interventions conducted by nurses from January 2000 until March 2015 were retrieved from all relevant databases. The studies had a before-after design and used qualitative and quantitative methods. REVIEW METHODS: For each study, we described how the intervention was supposed to improve self-management and compared this with the empirical evidence. Next, we described the context-mechanism-outcome strings for each separate study, explored patterns and integrated the findings. RESULTS: Thirty-eight papers were included, evaluating 35 interventions concerning a diversity of conditions. Seven different context-mechanism-outcome strings were identified. Interventions focusing on patients' intrinsic processes were most successful. Least successful were interventions only providing education aimed at patient behaviour change. Various contexts can influence the success of the interventions: involvement of relatives, target group (i.e. chronic condition, motivation, being recently diagnosed or not), involvement of fellow patients and intervention group homogeneity or heterogeneity. CONCLUSION: Successful interventions focus on patients' intrinsic processes (i.e. motivation or self-efficacy). This would guide nurses to decide what self-management support intervention they can best use in their specific setting and patient group.

Why Do Women Not Use Preconception Care? A Systematic Review On Barriers And Facilitators.

IMPORTANCE: Preconception care (PCC) has the potential to optimize pregnancy outcomes. However, awareness of PCC among the target population is generally limited, and the use of PCC remains low. IMPORTANCE: The objective of this study was to review the literature on women's perceptions regarding barriers and facilitators for the use of PCC. EVIDENCE ACQUISITION: A systematic search was conducted in MEDLINE, Embase, CINAHL, and PsycINFO for published studies until February 2015. Original qualitative and quantitative peer-reviewed studies from Western countries in English, holding women's perceptions regarding barriers and facilitators for the use of PCC. Data extraction and analysis were performed using NVivo version 10 software. A coding frame was derived from the findings and applied by 2 authors. Thematic analysis was used to identify key topics and themes. RESULTS: Twenty-one good-quality articles were included, of which 10 qualitative and 11 quantitative studies. Seven main themes were identified: preconditions, emotions and beliefs, perceived need, knowledge and experience, social structure, accessibility, and provider characteristics. "Not (fully) planning pregnancy", "perceived absence of risks", "lack of awareness", and "pregnancy experiences" were the most frequently identified barriers and "believing in the benefits" and "availability of PCC" the most frequently identified facilitators for PCC use. CONCLUSIONS AND RELEVANCE: Women perceive more barriers than facilitators related to PCC uptake, which explains why the use of PCC remains low. Our results provide a starting point to refocus interventions and strategies, aiming on enlarging the awareness, perceived importance, and accessibility of PCC to improve its uptake.

Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies.

BACKGROUND: Receiving adequate support seems to be crucial to the success of self-management. Although different empirical studies separately examined patients' preferences for self-management support (SMS), an overview is lacking. OBJECTIVE: The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided. SEARCH STRATEGY: Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. INCLUSION CRITERIA: Articles needed to meet all of the following criteria: (i) focuses on self-management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English. DATA EXTRACTION AND SYNTHESIS: A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies. MAIN RESULTS: Chronic patients need instrumental support, psychosocial support and relational support from health-care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support. DISCUSSION AND CONCLUSIONS: Patients do not self-manage on their own. Patients expect health-care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.

Between power and powerlessness: a meta-ethnography of sources of resilience in young refugees.

OBJECTIVE: This article reviews available qualitative studies that report young refugees' ways of dealing with adversity to address their sources of resilience. DESIGN: We searched five electronic databases. Twenty-six empirical studies were included in the review. A meta-ethnography approach was used to synthesize these qualitative studies. RESULTS: Six sources of resilience emerged: (1) social support, (2) acculturation strategies, (3) education, (4) religion, (5) avoidance, and (6) hope. These sources indicated social as well as personal factors that confer resilience in young refugees, but most of them also had counterproductive aspects. CONCLUSION: The results, from an ecological developmental perspective, stressed the interplay between protective and risk processes in the mental health of young refugees who had resettled in Western countries, and they emphasized the variability as well as the universality of resilience-promoting processes. Further research is needed to explore the cultural shape of resilience and the long-term consequences of war and migration on young refugees.

Frail Older Adults' Experiences With a Proactive, Nurse-Led Primary Care Program: A Qualitative Study.

The aim of the current study was to explore frail older adults' perceptions and experiences with a proactive, integrated nurse-led primary care program. A qualitative study nested within a randomized trial in primary care was conducted. In total, 11 semistructured interviews were conducted in a subsample of participants who received nurse-led care in the intervention group. Generally, proactive, nurse-led care was well-received and four different nursing roles were observed: (a) monitor, (b) director, (c) coach, and (d) visitor. The monitor role (i.e., observing and assessing potential risks) was perceived as the most important. The relationship with the nurse, timing of visits, and provided care, as well as tailoring the care to individual needs, were identified as conditions related to appreciation. If the care was well-regarded, older adults were more likely to accept it, which helped them anticipate changes or handle consequences of aging more easily.

Recording and accounting for stakeholder involvement in systematic reviews.

OBJECTIVES: The use of stakeholders in systematic reviews is increasingly valued, but their influence on the systematicity of the review is often unclear. The aim of this study was to describe some of the processes of involvement of stakeholders and to demonstrate a Tool for Recording and Accounting for Stakeholder Involvement (TRASI). METHODS: We demonstrate the TRASI in two worked examples. In one project, the reviewers collaborated with the end-user and an expert during the literature search. In the other project, experts were consulted to generate keywords before searching the literature. RESULTS: In the first project, disagreements about keywords to identify studies for the research topic were solved by informal discussion. In the second project, difficulties arose in reaching agreement between experts and reviewers about the core construct and the meaningful keywords associated with it. DISCUSSION: The TRASI aids researchers to systematically and transparently account for the decisions taken. The TRASI supports information specialists and librarians to shape the search strategy to match the objectives of the review. CONCLUSIONS: We propose the TRASI as a first step in resolving the challenges of detecting and reconstructing stakeholder influences. Potential new applications of the TRASI are discussed.

Factors influencing acceptance of technology for aging in place: a systematic review.

PURPOSE: To provide an overview of factors influencing the acceptance of electronic technologies that support aging in place by community-dwelling older adults. Since technology acceptance factors fluctuate over time, a distinction was made between factors in the pre-implementation stage and factors in the post-implementation stage. METHODS: A systematic review of mixed studies. Seven major scientific databases (including MEDLINE, Scopus and CINAHL) were searched. Inclusion criteria were as follows: (1) original and peer-reviewed research, (2) qualitative, quantitative or mixed methods research, (3) research in which participants are community-dwelling older adults aged 60 years or older, and (4) research aimed at investigating factors that influence the intention to use or the actual use of electronic technology for aging in place. Three researchers each read the articles and extracted factors. RESULTS: Sixteen out of 2841 articles were included. Most articles investigated acceptance of technology that enhances safety or provides social interaction. The majority of data was based on qualitative research investigating factors in the pre-implementation stage. Acceptance in this stage is influenced by 27 factors, divided into six themes: concerns regarding technology (e.g., high cost, privacy implications and usability factors); expected benefits of technology (e.g., increased safety and perceived usefulness); need for technology (e.g., perceived need and subjective health status); alternatives to technology (e.g., help by family or spouse), social influence (e.g., influence of family, friends and professional caregivers); and characteristics of older adults (e.g., desire to age in place). When comparing these results to qualitative results on post-implementation acceptance, our analysis showed that some factors are persistent while new factors also emerge. Quantitative results showed that a small number of variables have a significant influence in the pre-implementation stage. Fourteen out of the sixteen included articles did not use an existing technology acceptance framework or model. CONCLUSIONS: Acceptance of technology in the pre-implementation stage is influenced by multiple factors. However, post-implementation research on technology acceptance by community-dwelling older adults is scarce and most of the factors in this review have not been tested by using quantitative methods. Further research is needed to determine if and how the factors in this review are interrelated, and how they relate to existing models of technology acceptance.

Doctors' perceptions and use of evidence-based medicine: a systematic review and thematic synthesis of qualitative studies.

PURPOSE: Many primary qualitative studies of barriers and facilitators for doctors' use of evidence-based medicine (EBM) are available, but knowledge remains fragmented. This study sought to synthesize the results of these qualitative studies, taking the variability across context (i.e., medical disciplines, career stages, practice settings, and time of study) into account. METHOD: The authors searched PubMed through April 26, 2012, and independently selected studies according to prespecified criteria for relevance and methodological quality. Additionally, they performed a thematic synthesis through line-by-line interpretation, coding, and thematic arrangement of information. RESULTS: The search resulted in 1,211 publications, of which 30 studies were included. Five major themes emerged on barriers and facilitators for doctors' use of EBM: individual mind-set, professional group norms, EBM competencies, balance between confidence and critical reflection, and managerial collaboration. The authors found particular barriers and facilitators across career stages. Although clinical experience and professional status were perceived to be helpful, they could also prevent doctors from identifying information needs and adopting new evidence. Although residents' lack of clinical experience raised awareness of information needs, residents perceived lack of clinical experience and their hierarchical dependence on staff as barriers to articulating information needs and to translating and introducing evidence to patient care. CONCLUSIONS: Encouragement of group norms for safe communication and shared learning across career stages is perceived as the most prominent facilitator for EBM.

Bouncing forward of young refugees: a perspective on resilience research directions.

While studies on the consequences of trauma and forced migration on young refugees have focused mainly on their pathology, a focus on resilience in young refugees is needed to adequately represent their response to adversity and to help understand their needs. The aim of this article is to present a proposed study of resilience in young refugees which has been informed by an overview of achievements and challenges in the field of resilience. IN ORDER TO ADVANCE THE FIELD OF RESILIENCE, SEVERAL TOPICS NEED CLARIFICATION: definition and assessment of resilience, the relation of resilience to other constructs and the underlying biological and external factors influencing resilience. With respect to young refugees, the cross-cultural applicability of resilience has to be examined. Qualitative research, mixed method designs, comparative studies, and longitudinal studies seem especially promising in furthering this goal. The proposed study compares refugee adolescents with Dutch adolescents. Data from qualitative evidence synthesis, interviews, questionnaires, experiments, and DNA analysis will be combined to provide a multifaceted picture of factors contributing to resilience, resulting in a better understanding and efficient use of "resilience" to meet the needs of traumatised youth.

Patients' views on changes in doctor-patient communication between 1982 and 2001: a mixed-methods study.

BACKGROUND: Doctor-patient communication has been influenced over time by factors such as the rise of evidence-based medicine and a growing emphasis on patient-centred care. Despite disputes in the literature on the tension between evidence-based medicine and patient-centered medicine, patients' views on what constitutes high quality of doctor-patient communication are seldom an explicit topic for research. The aim of this study is to examine whether analogue patients (lay people judging videotaped consultations) perceive shifts in the quality of doctor-patient communication over a twenty-year period. METHODS: Analogue patients (N = 108) assessed 189 videotaped general practice consultations from two periods (1982-1984 and 2000-2001). They provided ratings on three dimensions (scale 1-10) and gave written feedback. With a mixed-methods research design, we examined these assessments quantitatively (in relation to observed communication coded with RIAS) and qualitatively. RESULTS: 1) The quantitative analyses showed that biomedical communication and rapport building were positively associated with the quality assessments of videotaped consultations from the first period, but not from the second. Psychosocial communication and personal remarks were related to positive quality assessments of both periods; 2) the qualitative analyses showed that in both periods, participants provided the same balance between positive and negative comments. Listening, giving support, and showing respect were considered equally important in both periods. We identified shifts in the participants' observations on how GPs explained things to the patient, the division of roles and responsibilities, and the emphasis on problem-focused communication (first period) versus solution-focused communication (last period). CONCLUSION: Analogue patients recognize shifts in the quality of doctor-patient communication from two different periods, including a shift from problem-focused communication to solution-focused communication, and they value an egalitarian doctor-patient relationship. The two research methods were complementary; based on the quantitative analyses we found shifts in communication, which we confirmed and specified in our qualitative analyses.

Supporting children after single- incident trauma: parents' views.

OBJECTIVE: To strengthen trauma-informed health care by exploring parents' experiences of assisting their child after single-incident trauma (eg, violence, accidents, and sudden loss). METHOD: Semistructured interviews with parents (N = 33) of 25 exposed children (8-12 years). RESULTS: Responsive parenting after trauma emerged as a core theme, consisting of (a) being aware of a child's needs and (b) acting on these needs. The authors identified 14 strategies, such as comparing behavior with siblings' behavior and providing opportunities to talk. Parents felt that their capacity to be responsive was influenced by their own level of distress. CONCLUSION: The authors propose a model of Relational PTSD (posttraumatic stress disorder) and Recovery to assist health care professionals working with children exposed to trauma. The results also point to the need to recognize the challenge that parents face when supporting a child after traumatic exposure and to align more with parents about procedures that may cause the child to be reminded of the event.

Making a difference: towards a method for weighing the evidence in a qualitative synthesis.

OBJECTIVES: In a qualitative synthesis, primary qualitative studies are integrated to develop a theory or evidence-based interventions. Until now, the strength of the evidence in the primary studies has not been taken into account in the outcome of the qualitative synthesis. In this paper, a method is developed and evaluated to assign weights to the findings of the qualitative studies using both the frequency and the quality of the reported results. METHOD: Seventeen qualitative studies were retrieved in an illustrative example project on children and trauma. Findings were extracted from the primary studies with the use of coding which resulted in 14 themes. The quality of the studies was appraised using both expert judgement and a quality checklist. These outcomes are used to calculate the weights. RESULTS: When the outcomes of the checklist appraisal are compared with those of the expert judgement, the effect on the strength of the evidence is virtually always in the same direction. We found that as the frequency with which a concept is studied is low, the strength of the evidence oftentimes decreases even further when using the quality of the results in the weighing process. CONCLUSIONS: In the end, the outcomes of a critical appraisal affect the weight that is placed on particular studies. The use of a checklist is recommended because of its more distinguishing ability. The method that was developed for assigning weights to the evidence is discussed in light of both the quality appraisal in qualitative research and the objectives of qualitative synthesis.

Understanding the lack of understanding: invalidation from the perspective of the patient with fibromyalgia.

OBJECTIVE: Patients with fibromyalgia have difficulty with the invisibility and medically unexplained character of the syndrome. Disbelief, lack of acceptance, and stigmatization by their spouse, family, colleagues, the health care system, and society are key issues in their lives. Nevertheless, the components of this phenomenon that we term "invalidation" are not clear. The aim of our study was to identify the definition and structure of invalidation as perceived by patients with fibromyalgia. METHODS: A hierarchical cluster analysis was applied to examine everyday invalidation experiences of patients with fibromyalgia. Ninety-four statements about invalidation that were derived from interviews and a card-sorting (Q-sort) technique provided the input for this cluster analysis. RESULTS: The hierarchical structure of invalidation showed a higher-order distinction between statements reflecting "discounting" and "understanding." Discounting was subdivided into the components "denying" and "patronizing" (consisting of "lecturing" and "overprotecting"). Understanding was subdivided into "supporting" and "acknowledging." These higher-order constructs were further subdivided into 15 lower-order clusters that reflected cognitive, affective, and behavioral aspects of invalidation. CONCLUSION: Invalidation as perceived by patients with fibromyalgia includes active negative social responses (denying, lecturing, and overprotecting) as well as a lack of positive social responses (supporting and acknowledging) with respect to the patient and the condition of the patient. This definition of invalidation provides a basis to quantify invalidation and to study its impact on symptom severity, quality of life, therapy adherence, therapy outcome, and other important aspects of fibromyalgia.

Patients' explanations for unsuccessful weight loss after laparoscopic adjustable gastric banding (LAGB).

OBJECTIVE: Not all morbidly obese patients attain sufficient weight loss after laparoscopic adjustable gastric banding (LAGB). We examined patients' explanations for unsuccessful weight loss and self-awareness regarding food intake. METHODS: Interviews with 11 patients (10 female/1 male; mean age 46 years) with unsuccessful weight loss were transcribed and analyzed with the MAXqda2 program. RESULTS: Interviewees were disappointed with the postoperative outcome. Some showed no awareness of their own role, while others were inefficacious to continue the actions needed to maintain weight loss, especially during times of stress. Typical statements that distinguished interviewees were: 'It didn't work out', 'I don't care anymore', 'I know I have to do it', 'I know I can do it'. CONCLUSION: Some patients with unsuccessful weight loss after LAGB are insufficiently aware that their own effort is needed to maintain weight loss. Others have self-awareness, but find it difficult to turn awareness into action. PRACTICE IMPLICATIONS: This group could perhaps be helped by tailoring postoperative guidance to the stage of change of an individual patient. Counseling could include increasing awareness of the need to self-control eating and offering assistance to turn intentions into action and to deal with stress, emotions and physical problems.

Afghan refugees and their general practitioners in The Netherlands: to trust or not to trust?

In-depth interviews with Afghan refugees living in The Netherlands about their experience of healthcare, have led to a series of narratives. This article focuses on the relationship between the refugee-patients and their general practitioners (GPs) from the participants' point of view. It was possible to distinguish four different types of narrative, by analysing the individual interviews into critical episodes. Building trust was identified as the crucial issue. A number of possible explanations are given for the differences found. Links are made to participant expectations in respect of health and healthcare and to their personal and social resources. The GP has a key role in the Dutch healthcare system, but is a novel phenomenon for refugees arriving from Afghanistan. The development of a relationship of trust is sometimes compromised by negative personal experience and also by stories relating such experiences circulating in the Afghan community. The elements that constituted positive and negative episodes and led to the development or undermining of trust were identified in the narratives. Negative experience tended to be interpreted as a sign of prejudice on the part of the healthcare professional. The findings of this study are discussed in the wider context of research into patient priorities in general practice.

'It might happen or it might not': how patients with multiple sclerosis explain their perception of prognostic risk.

This qualitative study aimed to examine risk perception and seriousness of wheelchair dependence in patients with multiple sclerosis. Perceived absolute risk and perceived seriousness were assessed for 2-year, 10-year and lifetime prognosis of wheelchair dependence using visual analogue scales (VAS). In semi-structured interviews, patients (n = 85) were asked to elucidate these VAS scores. Explaining perceived absolute risk, patients mentioned disease-related factors as well as psychological factors. Uncertainty about future disease progression was a predominant factor for all patients, even those with low and high perceptions of risk. Wheelchair dependence was perceived as a serious outcome primarily because of its possible implications, such as loss of independence. When perceptions of 2-year, 10-year and the lifetime prospect of wheelchair dependence were compared, it was found that patients discriminated in their perception of absolute risk, but less in that of seriousness. Comparison of quantitative and qualitative assessments indicated good construct validity for perception of the absolute risk and seriousness of wheelchair dependence.

Continuation of caregiving among partners who give total care to spouses with multiple sclerosis.

As is expressed in the term 'caregiving career', caregiving is a dynamic phenomenon. The present study addresses the total care phase in which spouses give direct and ongoing personal care to their partners with multiple sclerosis (MS). The dyadic nature of caregiving is stressed by examining the roles which both spouses play in establishing a commitment that results in the continuation of caregiving. For this purpose, 17 couples facing MS were selected in the Netherlands and Belgium. Ten females and seven males were disabled, and all were living with partners who provided a full range of care. Both partners were interviewed separately about their motivation to give care, dependency on help, the continuation of caregiving and their relationship. The analysis consisted of fragmenting and connecting the data, and involved close reading and constant comparison. The present findings support those previous studies, i.e. that continuation of caregiving is the result of an interchange between the partners. The commitment that is established can be expressed in terms of inevitability, shared misfortune, reciprocity and the desire to prevent admission to a nursing home. Three aspects appear to contribute to the creation of commitment and the ensuing continuation of caregiving: namely, marital loyalty, and the arbitrariness of the disease and its serious nature. For community care, it is important to consider the negotiations between partners and the impact of caregiving on their relationship.