Illness perceptions and self-care behaviours in the first years of living with type 2 diabetes; does the presence of complications matter?

Objective: To assess illness perceptions, self-care behaviours and their relationship in recently diagnosed type 2 diabetes mellitus (T2DM) patients with and without diabetes-related complications.

Design: Cross-sectional survey among 192 recently diagnosed T2DM patients of whom 23% reported the presence of diabetes-related complications. Illness perceptions and self-care were assessed by the Revised Illness Perception Questionnaire (IPQ-R) and the revised Summary of Diabetes Self-Care Activities (SDSCA) measure.

Results: Generally, participating patients perceived T2DM as a chronic, but relatively controllable condition with minor consequences. In the presence of complications, however, T2DM was perceived as more unpredictable with more (serious) consequences and less controllable by self-care or medical treatment. Furthermore, engagement in exercise and foot care was reported more often by patients with complications. Self-care was related to certain illness perception dimensions, and interactions between perceptions and complications were found.

Conclusion: T2DM patients in the first years of their illness are often recommended to make lifestyle changes in the absence of noticeable diabetes-related symptoms or complaints. As many T2DM patients do not seem to perceive their condition to be serious and postpone lifestyle changes until diabetes-related complications appear, a major challenge for professionals is to convince asymptomatic patients of the importance of self-care.     

The relative importance of patients’ decisional control preferences and experiences

Objective: Patients’ role in treatment decision-making can influence psychosocial and health-related outcomes (i.e. satisfaction, felt respect, adherence). We examined decisional control in a surgical context, identifying correlates of patients’ preferences and experiences.

Design: 380 patients and 7 surgeons were surveyed during initial surgical consultation visits in a low-income outpatient clinic.

Measures: Patients reported preferences for (pre-consultation) and experiences of (post-consultation) decisional control, demographics, satisfaction with care, and adherence to treatment recommendations. Surgeons rated patients’ health status.

Results: Preferences for and experiences of decisional control were unrelated, suggesting significant preference–experience misalignment. However, this misalignment did not appear to be consequential for patient outcomes. Rather, more decisional control, regardless of patients’ preferences, predicted greater satisfaction with care and greater self-reported adherence as assessed at a post-surgical appointment.

Conclusions: Decisional control predicts better outcomes for patients, regardless of their preferences for control over treatment decisions. These findings suggest that interventions should aim to increase patients’ degree of decisional control when feasible and appropriate.     

The role of risk perception in explaining parental sunscreen use

Objective: This study assessed: (1) whether risk perceptions about skin cancer were related to parent's use of sunscreen on their children; (2) which combination of assessments susceptibility and severity best explain parental sunscreen protection behaviours and (3) whether risk perceptions influence behaviour directly through intentions or through attitudes, subjective norms and self-efficacy.

Design: Two longitudinal studies assessed sunscreen protection behaviours of parents for their toddlers (N?=?391) and young children (N?=?436).

Main outcome measure: Parent's use of sunscreen on their children.

Results: Risk perceptions correlated with future sunscreen protection behaviours of parents but were lower than those of attitude, social influence and self-efficacy. Treating susceptibility and severity as an additive function resulted in the best model fit. Risk perceptions were related with future intention and future sunscreen protection behaviour, but the effects were mediated through attitude, social influence and self-efficacy.

Conclusions: Our path analyses suggest treating susceptibility and severity as an additive function. A multiplicative model without main effects – although often used – had the poorest fit. Risk perceptions influence behaviour by influencing attitudinal and self-efficacy beliefs. Addressing risk perceptions in health communication programs is relevant when the purpose is to increase awareness and to influence attitudes and self-efficacy.     

Experiences of surgery readiness assessments in British Columbia

Abstract

Background: A surgical readiness assessment is a major step in the medical journey of trans people seeking gender-affirming surgery. Much of the peer-reviewed literature surrounding surgical readiness assessments emphasizes the perspectives of academics and clinicians, leaving the voices of trans and gender diverse patients largely unheard.

Aims: This paper foregrounds patient experiences with surgery readiness assessments to discuss the tensions, challenges and opportunities they generate.

Methods: We conducted a thematic analysis of 35 in-depth interviews with trans people who accessed or were seeking to access gender-affirming surgery in British Columbia.

Results: We developed three main themes to capture participants’ narratives of their surgical assessment experiences. The first, assessments as gatekeeping, explores the stories of people who described their assessments as outdated and even discriminatory processes. The second, assessments as a barrier to care, discusses the informational missteps, bureaucratic regulations, economic issues, and geographic concerns that made assessments difficult to access. The third, assessments as useful, includes positive stories about assessments that often involved feeling supported by an assessor and feeling prepared for the next steps.

Discussion: These narratives demonstrate how much variation exists among people’s experiences of readiness assessments for gender-affirming surgery. No matter how their actual assessment turned out, many participants approached their appointments with a great deal of anxiety and trepidation. We attributed this stress was to challenges ranging from lengthy wait times, arbitrary medical gatekeeping, a lack of access to knowledgeable and supportive providers, unclear or changing administrative processes, and insufficient communication. To address these challenges, it is crucial for the medical system to create more accessible pathways with centralized, up-to-date information for people trying to access assessments. Patients are best served by multi-disciplinary gender-affirming teams that provide individualized care.     

What is the key to culturally competent care: Reducing bias or cultural tailoring?

Objective: To gain a better understanding as to whether disparities in patient–provider relationships arise from ethnic minority patients being treated differently than European American patients while they would prefer to be treated the same, or whether disparities arise when ethnic minority patients are treated the same as European American patients while they would prefer to be treated differently.

Method: African-American, Latina/Latino and European American community members were recruited to participate in one of 27 focus group discussions. Topics included what made a good or bad relationship with a doctor and what led one to trust a doctor. A thematic analysis was conducted using NVivo 10.

Results: Patients of all groups described experiences that reflected the concepts of patient-centred care, such as wanting a clinician who is attentive to patients’ needs. African-American patients reported experiences they viewed as discriminatory. Some African-American patients felt it was appropriate to racially/ethnically contextualise their care, and most Latina/Latino patients preferred language/culturally concordant clinicians.

Conclusion: Health care disparities might be reduced through a patient-centred approach to cultural competency training, general knowledge of the cultural context of clinicians’ patient population, and attention to the effects of racial bias and discrimination among both clinicians and non-clinical staff.     

Foot care, ‘spousal’ support and type 2 diabetes: an exploratory qualitative study

Objectives: People with type 2 diabetes (T2DM) should check their feet and protect them against harm, but few do. Living with a spouse contributes to good foot care behaviour. This study explores awareness, perceived susceptibility of, and concern about, foot problems, and reported foot care behaviour, and ways in which a spouse may or may not contribute to foot care in T2DM.

Methods: 1:1 interviews were conducted with 6 individuals with T2DM. Half had a spouse half did not. There was one person at low, medium and high risk in each sample. Each spouse participated in a separate interview, and the dyads were interviewed together. Interviews were analysed using Applied Thematic Analysis.

Results: All participants knew that diabetes was associated with foot problems. Not all people with T2DM thought that they were susceptible; spouses perceived greater susceptibility for the patient. This was unrelated to risk level. Most people with T2DM and all spouses engaged in behaviour to identify problems or protect feet, but rarely both. Spouses’ attitude and behaviour did influence the patients’ own behaviour. At times spouse support was perceived positively, and at times negatively.

Conclusion: Engaging spouses in foot care education may improve foot care behaviour.     

The psychosocial predictors of long-term distress in partners of patients with acute coronary syndrome

Objective: Partners of acute coronary syndrome (ACS) patients are at risk of experiencing long-term distress and the purpose of this study was to identify its predictors.

Design: Using an observational design, 80 partners of ACS patients completed validated questionnaires at three time points. The predictor variables, marital satisfaction and optimism were assessed three weeks after patient hospital discharge (T1). The outcomes, depressive symptoms and physical health status (from a quality of life scale) were measured 6 (T2) and 12 (T3) months post-discharge, and scores were combined to indicate the long-term response.

Main outcome measures: Depressive symptoms and physical health status.

Results: Partner depressive symptoms increased and physical health status deteriorated over the months following the patients’ ACS. After controlling for demographics, clinical severity of ACS and T1 levels of the outcome variable, partners’ long-term depressive symptoms were predicted by poor marital satisfaction and low optimism at T1, and poor physical health status was predicted by low T1 optimism.

Conclusion: Psychosocial factors are predictors of long-term distress for ACS partners. Partners in an unhappy marriage or with low optimism after ACS are at an increased risk of depression and low physical health status, and should be the target of additional support.     

The Hepatitis C treatment experience: Patients’ perceptions of the facilitators of and barriers to uptake,adherence and completion

Objective: This study explores the perceptions of patients receiving treatment for Hepatitis C to determine what factors influence their decision to commence treatment, ability to maintain adherence and complete their treatment program.

Design: Semi-structured interview techniques were used in a qualitative study of 20 patients undergoing treatment for Chronic Hepatitis C (CHC).

Main outcome measures: To explore patients’ perceived barriers and facilitators of Hepatitis C treatment adherence and completion.

Results: Analysis of patient interviews identified four key themes: (1) motivations for commencing CHC treatment – fear of death and ridding themselves of stigma and shame; (2) the influential role of provider communication – patients reported that information and feedback that was personalised to their needs and lifestyles was the most effective for improving adherence to treatment; (3) facilitators of treatment adherence and completion – social, emotional and practical support improved adherence and completion, as did temporarily ceasing employment; (4) barriers to treatment adherence and completion – these included side effects, stigma, a complicated dosing schedule and limitations of the public healthcare system.

Conclusion: To increase treatment adherence and completion rates, a patient-centred approach is required that addresses patients’ social, practical, and emotional support needs and adaptive coping strategies.     

The experiences and understandings of obesity: Families’ decisions to attend a childhood obesity intervention

Objectives: This study investigated the families’ experiences of a childhood obesity intervention and sought to understand factors that influence attendance and lifestyle behaviours.

Design: Eleven semi-structured interviews were conducted and analysed using Interpretative Phenomenological Analysis.

Results: Four themes emerged highlighting the differences and similarities between attendees and non-attendees perceptions of childhood obesity, perceptions of the intervention, practical barriers and overcoming hurdles to attending and, availability and suitability of local facilities.

Conclusions: The findings relate to identity and health communication. For some families attending an obesity intervention may challenge social and individual identities, which may have an impact on subsequent behavioural decisions. Those who attend the obesity intervention may experience a shift in identity, which may or may not initially be perceived as a positive outcome. Public Health and those involved in treatment interventions should aim to bridge the gap between people’s in-group identities and those associated with particular lifestyle behaviours. In order to be effective, services must meet the needs of their clients and address any preconceived negative perceptions by carefully considering how health information is presented, how it is understood and most importantly how identity may affect motivation to engage in, and sustain, new behaviours.     

Brain drawings following traumatic brain injury (TBI) and links to illness perceptions and health outcomes – Findings from a population-based study

Objective: Individuals’ illness perceptions predict health behaviours and influence functional outcomes. This study examined associations between a novel assessment of illness perceptions, in the form of adult’s brain drawings after traumatic brain injury (TBI) and questionnaire measures of illness perceptions, quality of life and post-concussive symptoms.

Design: Population-based, prospective longitudinal study examining 245 adults with predominantly mild TBI with high risk of complications.

Main outcome measures: Participants were asked to draw pictures of what they thought their brain looked like before injury and at baseline and one month post-injury. Drawing characteristics (height, width and percentage damage at one month) were examined in relation to each outcome of interest at six months.

Results: Greater damage at one month was associated with more negative illness perceptions (rs = .23), poorer mental health (rs = ?.21), and more total post-concussive symptoms (rs = .27 to r = .35) at six months. The extent of damage depicted reduced over time (p < .001). No associations were found between the amount of damage drawn and injury severity, nor the height or width of drawings and injury severity or illness perceptions.

Conclusion: Drawings post-TBI offer a simple, cost- and time-effective way to begin discussions and improve understanding of peoples’ illness perceptions.     

The role of centrality to self-concept in moderating the associations between injury perceptions and outcomes

Abstract

Objectives: To test the centrality of injury to self-concept as a moderator of the associations between injury perceptions and outcomes.

Methods: Two concurrent studies on samples of injured individuals.

Measures: The centrality of injury to one’s self concept was measured by the degree of self-injury separation (PRISM); injury perceptions were measured by the injury perception questionnaire; and outcomes by standard scales of self-assessed health, physical, emotional and social functioning, vitality, depression, anxiety and somatisation. Regression analyses examined the significance of adding the interactions between injury centrality and injury perceptions to explained outcome variance, beyond their separate contributions.

Results: Both injury centrality and injury perceptions significantly explained variance in patients’ functioning and well-being. Injury centrality moderated the associations between various injury perceptions and outcomes, especially pronounced for emotional representations of the injury. As hypothesised, the effects of injury perceptions on outcomes were stronger among patients for whom the injury was central to their self-concept compared to patients who perceived the injury as peripheral to their self-concept.

Conclusions: ‘Centrality to the self’ is a moderator of the impact of perceptions on outcomes of injuries. The findings suggest ways to tailor interventions to sub-groups of injured patients based on injury centrality to their self-concept.     

La photo-expression : un outil pour accompagner le patient en éducation thérapeutique et pour évaluer son évolution

IntroductionIn therapeutic patient education (TPE), photoexpression is often used by psychologists in order to work on patients’ perceptions and experiences, especially in group workshops.AimThe aim of this study was to explore diabetic patients’ discourse during two photoexpression group workshops at the beginning and the end of a TPE program.MethodSeventeen patients took part in this study. A lexicometric analysis was performed on their discourse during the two group workshops (Alceste® software).ResultsFor the first workshop, the analysis yielded two classes: the place of diabete in daily life as well as psychic and social functioning. For the second workshop, the analysis also yielded two classes: self-management and adjustement, as well as program experience and return back home.ConclusionThe results show an increase in adaptation skills and particularly in self-efficacy, motivation, positive emotions, perhaps illness acceptance. Photoexpression shows to be a very interesting tool in TPE to accompagny patients but also evaluate their discourse evolution during a TPE program.     

Managing multiple chronic conditions in Singapore – Exploring the perspectives and experiences of family caregivers of patients with diabetes and end stage renal disease on haemodialysis

Objective: Diabetes mellitus (DM) is the commonest cause of end stage renal disease (ESRD). Despite increasing DM-ESRD prevalence and high dependency on care, there is a lack of literature on DM-ESRD caregivers. We sought to explore the perspectives and experiences of caregivers of patients with DM undergoing haemodialysis in Singapore.

Design: This study employed an exploratory, qualitative design comprising in-depth interviews with caregivers of DM-ESRD patients.

Methods: Semi-structured interviews were conducted with a sample of 20 family caregivers (54.2 ± 12.6 years; 75% female) of DM-ESRD patients. Data were analysed using Thematic Analysis.

Results: Key caregiving challenges identified were managing diet, care recipients’ emotions and mobility dependence. Patients’ emotional reactions caused interpersonal conflicts and hindered treatment management. Difficulties in dietary management were linked to patients’ erratic appetite, caregivers’ lack/poor understanding of the dietary guidelines and caregivers’ low perceived competence. Limited resources in terms of social support and finances were also noted. Physical and psychological well-being and employment were adversely affected by caregiving role.

Conclusion: This study highlights distinctive aspects of the DM-ESRD caregiving experience, which impact on caregivers’ health and challenge care. Disease management programmes should be expanded to support caregivers in dealing with multimorbidity.     

An exploration of attitudes toward the use of patient incentives to support diabetes self-management

Objective: To improve our understanding of the potential of incentives to enhance diabetes self-management (type 1 and type 2) and to integrate incentives into a conceptual model of diabetes self-management over time.

Design: A qualitative analysis of in-depth individual interviews with 12 patients and 9 providers.

Main outcome measures: Influence of time on patients’ needs for diabetes self-management technologies and on the use of incentives to drive behavioural changes.

Results: Ten of the 12 participants with diabetes (83%) were interested in using financial incentives to improve their diabetes self-management. We found that incentives can play two key roles in diabetes self-management: guide the learning phase during the creation of habits; and serve as an acknowledgement of efforts made in the stable phase, when providers typically only focus on the patients’ failures at self-management.

Conclusion: Patients seem receptive to the idea of financial incentives, which have the potential to support diabetes self-management through either small monetary amounts or tangible rewards. Incentives hold promise for supporting behaviour changes, especially in early stages of diabetes, but they require careful planning to avoid the undesired consequence of decreased intrinsic motivation.     

Theory of Mind Understanding and Conversational Patterns in Middle Childhood

The author investigated the longitudinal relations between theory of mind (ToM) understanding and perceptions of self and social conversations in 17 school-aged children (12 girls, 5 boys, age 8–12 years). ToM was assessed at Time 1 (T1; M age = 8 years 5 months, SD = 8.7 months, and perceptions of self and conversational experiences assessed two years later at Time 2 (T2; M age = 10 years 4 months, SD = 7.9 months. Most importantly, longitudinal findings showed that children who scored relatively high on ToM at T1 reported relatively lower perceptions of self-worth and higher number of mental states verbs in their perceptions of peer and family conversations at T2. Significant negative longitudinal associations were found between children's number of siblings and their perceptions of self-worth (T1) and number of cognitive terms in their perceptions of peer and family conversations (T2). Frequency analysis suggested that girls’ perceptions of conversations referred to more social and psychological aspects of self and relationships, whereas boys focused mainly on physical activities. Most children were more likely to prefer listening to talking during social conversations. The majority of children reported feelings of mixed or ambiguous emotions during experiences of silence. Implications for socioemotional and cognitive development in early adolescents are discussed.     

Day-to-day living with severe chronic obstructive pulmonary disease: Towards a family-based approach to the illness impacts

Objective: This study explores the perspectives of both patients and family members regarding the impact of chronic obstructive pulmonary disease (COPD) in their family life.

Design: An exploratory qualitative study was conducted with patients and their family members in the chronic phase of COPD. Individual interviews were performed to explore participants’ perspectives and submitted to thematic analysis.

Results: Six major themes emerged from patients’ perspective: (1) impact of COPD symptoms on personal and family daily life; (2) (over)protective family support; (3) difficulties in couple communication; (4) sense of identity loss; (5) fear of COPD progression; and (6) coping resources. Five main themes emerged from the family members’ perspective: (1) restrictions in family’s social life; (2) emotional distress related to COPD exacerbations; (3) tension in couple relationship; (4) financial strain of COPD; and (5) coping resources.

Conclusions: The overall findings illustrate the complex interaction between the experience of living with COPD and communication patterns, emotional states, social support and social roles within the family. The results highlight the need to develop family-based interventions to facilitate a functional adjustment to COPD. However, these interventions in COPD remain undeveloped and empirical evidence is needed.     

The impact of valence framing on response expectancies of side effects and subsequent experiences: a randomised controlled trial

Abstract

Objective: Pre-treatment side effect expectancies often influence subsequent experiences; however, expectancy-based reduction strategies are lacking. We explored whether framing information about adverse responses (in positive or negative formats) altered expectancies and experiences of a cold pressor task. We further investigated associations between expectancies and experiences, to inform potential interventions.

Design: Healthy volunteers (N?=?134), randomised to receive positively- or negatively-framed pre-cold pressor task information, self-rated 12 expectancies for cold pressor experiences, emotional state and coping style.

Main Outcome Measures: Self-reports of the same 12-experiences (recorded during and after the experiment) were assessed.

Results: Framing had minimal impact on expectancies and experiences; however, discomfort threshold (p?=?.08, d?=?0.22) showed a trend in the expected direction. Hierarchical regressions revealed expectancies uniquely, significantly predicted 6–23% of the variance for 11 subsequent experiences. Following a popular charity event (Ice Bucket Challenge), all participants showed higher ‘discomfort thresholds’ (p?=?.001, d?=?0.59), and those in the negative frame reported more overall ‘discomfort’ (p?=?.01, d?=?0.60) than participants in the positive condition.

Conclusion: Expectancies uniquely influenced subsequent cold pressor experiences. Framing had minimal impact in this ‘analogue’ medical setting, only influencing ‘discomfort threshold’. ‘Discomfort threshold’ and overall ‘discomfort’ were also impacted by a social media challenge, highlighting a potential area for intervention.     

The relation of illness perceptions to stress,depression, and fatigue in patients with chronic lymphocytic leukaemia

Objective: Chronic lymphocytic leukaemia (CLL) is the most prevalent adult leukaemia and is incurable. The course and treatment of CLL is unique and characterised by repeated cycles of treatment, stable disease and relapse. Utilising a Self-Regulatory Model framework, we examined the relationship between patients’ illness perceptions and cancer-specific stress, depressive symptoms and fatigue. Our aim was to test illness perceptions as predictors of these outcomes when variance due to disease and treatment variables was controlled.

Design: Data were collected on 147 patients with relapsed/refractory CLL as they entered a phase II clinical trial of an investigational medication at a university affiliated, National Cancer Institute designated comprehensive cancer center.

Main outcome measures: Cancer-specific stress, depressive symptoms and fatigue interference.

Result:. Hierarchical multiple regression was used. Consequences and emotional representation were related to all outcomes (ps?p?p?Conclusion: Illness perceptions are related to cancer-specific stress, depressive symptoms and fatigue interference in relapsed/refractory CLL. Interventions targeted at restructuring maladaptive illness perceptions may have clinical benefit in this population.