Exploring patient perspectives of prediabetes and diabetes severity: a qualitative study

Abstract

Objective: This qualitative study sought to identify and describe patients’ variant perceptions of disease severity after receiving a type 2 diabetes (T2DM) or prediabetes (preDM) diagnosis.

Design: Researchers interviewed 29 patients from two US medical centers to ascertain perceptions of severity. We used the constant comparative method from a grounded theory approach to identify themes from patients’ perspectives that inform their disease severity. This approach was used to help translate research to practice and ultimately identify intervention strategies informed by authentic experiences of preDM and T2DM patients.

Results: Perceptions of disease severity fell into two groups: high and low severity. Patients diagnosed with T2DM and preDM emerged in both groups and were comparative in terms of sample size, gender, and ethnic diversity. Several factors contributed to patients’ beliefs, including what they were told about the disease, observations from experiences within their own social network, and information from formal diabetes classes and their own research. The two perspectives diverged when patients described how their belief was informed by three thematic properties or personal factors: (i) fears; (ii) clinician communication; and (iii) social comparisons.

Conclusions: Beliefs about severity are influenced by patients’ fears, interactions with clinicians, and experiences within their social networks. These findings show that when interacting with patients with T2DM or preDM, clinicians should elicit patient perceptions of disease severity so they may then tailor the discussion to address these perceptions and help patients grasp the severity of these conditions.     

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.     

“Doubly Mother”: Heterologous Artificial Insemination Between Biological and Social Parenthood: A Single Case Study

In heterologous artificial insemination, the donation of gametes (either sperm or eggs) from a third person allows infertile and same-sex couples to become parents. Therefore, the child is genetically related to one parent, while the other parent is referred to as the social mother or father. This current single case study aimed at investigating this double access to parenthood in a lesbian couple who had two children after heterologous artificial insemination. In this couple, both women delivered one of the two children, so that each partner is either biological or social mother. The Clinical Generational Interview was used to assess the quality of family relationships, with a specific focus on three dimensions: the origins of each partner, the constitution of the couple, and the generational passage. Paper and pencil textual analysis was conducted following the principles of Interpretative Phenomenological Analysis and led to the identification of six dominant themes (and subthemes): (a) relationship with the family of origin; (b) couple relationship; (c) generational passage; (d) heterologous artificial insemination and “double motherhood”; (e) donor/biological father; and (f) children identity and the disclosure of their origin. This study’s findings revealed the importance of using research techniques aimed at in-depth exploration of this phenomenon consistently with the specificities of the new filiation forms. The adoption of a transgenerational perspective allows articulating conception coordinates with the history of the couple and each partner’s origins.     

A qualitative analysis of the role of emotions in different patterns of long-term weight loss

Objective: To explore participant perspectives of the impact emotions have on weight loss.

Design: A qualitative design gathered data through semi-structured interviews with participants in a weight management programme. The interview addresses the following research questions: (1) how do individuals working to lose weight perceive the impact emotions have on their long-term success, and (2) what strategies do more or less successful participants use to regulate their emotions? Researchers conducted and transcribed the interviews then completed content analysis to create and organise themes.

Results: Two broad themes emerged through the interviews with 21 participants: emotional impact and emotional regulation. Further subthemes captured emotions blocking action toward goals, strategies for regulating emotions (e.g. exercise, food) and the need for new strategies to regulate emotions. Themes were also split in to three groups based on weight outcomes: regainer, moderate success (3–6% loss) and large success (>7% loss). More successful participants, compared to regainers, shared being aware of the impact of their emotions and made efforts to develop healthy regulation strategies.

Conclusions: Emotional awareness and regulation play an important role in participant’s weight management experience. Taking time to build emotional awareness and strategies to manage emotions is important to participants in weight management.     

Does social support predict smoking abstinence in dual-smoker couples? Evidence from a dyadic approach

Background and Objectives: Romantic partners have a significant influence on their health behaviors. Evidence for the effectiveness of social support for smoking abstinence, however, is mixed and the role of social support for smoking abstinence in dual-smoker couples is understudied.

Design: 77 dual-smoker couples were assessed 30 days after a joint quit attempt using a dyadic approach.

Methods: Received and provided support, self-reported and objectively measured smoking abstinence were assessed from both partners. Actor and partner effects of received and provided support on self-reported and objectively measured smoking abstinence and their difference for men and women were investigated with the Actor–Partner Interdependence Model using multilevel modeling.

Results: A significant actor effect emerged: Higher reports of received emotional support were related to an increased likelihood of objective smoking abstinence for men and women alike. For men only, partner effects of women’s received emotional and instrumental support emerged (p?<?.10): Higher reports of women’s support receipt were associated with an increased likelihood of men’s self-reported abstinence.

Conclusion: Received emotional support seems to play a key role in dual-smoker couple’s abstinence, whereas provided support does not seem to make a difference in successful quitting in dual-smoker couples.     

Supporting families of transgender children/youth: Parents speak on their experiences,identity, and views

ABSTRACT

Background: Transgender children/youth demonstrate the best possibility for resilience and positive mental health when they are part of an affirming and supportive family. To optimize families in supporting transgender children/youth, parents/caregivers need to be supported. Transgender children/youth and their families regularly navigate a myriad of challenges through society.

Aims: Within the extant literature on transgender children and youth, relatively little attention is focused on the experiences of parents/caregivers and how their close family relationships are affected. The present qualitative study addresses this gap in knowledge through its exploration of the experiences, identities, and views of parents/caregivers of transgender children/youth.

Method: The study is longitudinal and this article represents the first wave. Fourteen parents of 12 transgender children/youth, aged 6–17, participated in in-depth semistructured interviews. Participants were recruited via social media and at an on-site conference for transgender youth and their families. All children/youth had socially transitioned. Those who were eligible for puberty suppression and/or hormone therapy were receiving those. The interviews were inductively coded for themes by two coders using the constant comparative method.

Results: Participants' reports on their experiences yielded three themes: (1) transgender issues as the family's focus; (2) proactivity, child-focused: preemptive actions to prevent adverse consequences; and (3) self-care. These themes included subthemes on effective coping strategies to mitigate struggles. Three themes related to participants' identity and views emerged: (1) identity reformation, (2) self-evaluation, and (3) views of future. These themes included subthemes that reflected how participants viewed themselves, their child, and the future.

Discussion: A transgender identity in one family member affects all household members. Parents/guardians may experience guilt and self-doubt over decisions. Factors that may improve outcomes with extended family and schools include families' preemptive dissemination of information on transgender identities and explicating expectations of respect and nonintrusion. Ingrained traditions may force life-altering decisions.     

Transactional pathways of transgender identity development in transgender and gender-nonconforming youth and caregiver perspectives from the Trans Youth Family Study

Background: A growing body of research has examined transgender identity development, but no studies have investigated developmental pathways as a transactional process between youth and caregivers, incorporating perspectives from multiple family members. The aim of this study was to conceptualize pathways of transgender identity development using narratives from both transgender and gender-nonconforming (TGN) youth and their cisgender (nontransgender) caregivers.

Methods: The sample included 16 families, with 16 TGN youth, ages 7 to 18 years, and 29 cisgender caregivers (N = 45 family members). TGN youth represented multiple gender identities, including trans boy (n = 9), trans girl (n = 5), gender-fluid boy (n = 1), and girlish boy (n = 1). Caregivers included mothers (n = 17), fathers (n = 11), and one grandmother. Participants were recruited from LGBTQ community organizations and support networks for families with transgender youth in the Midwest, Northeast, and South regions of the United States. Each family member completed a one-time, in-person semistructured qualitative interview that included questions about transgender identity development.

Results: Analyses revealed seven overarching themes of transgender identity development, which were organized into a conceptual model: Trans identity development, sociocultural influences/societal discourse, biological influences, family adjustment/impact, stigma/cisnormativity, support/resources, and gender affirmation/actualization.

Conclusions: Findings underscore the importance of assessing developmental processes among TGN youth as transactional, impacting both youth and their caregivers.     

Childhood exposure to emotional abuse and later life stress among Kenyan women: a mediation analysis of cross-sectional data

Background and objective: We explore whether perceived stress among Kenyan mothers is predicted by childhood exposure to emotional abuse – both witnessed among parents and experienced directly. Further, we explore whether this association is mediated by social support, family functioning and polygynous marriage.

Design: We used cross-sectional data from a systematic random sample (n?=?1974) of mothers in semi-rural Kenya.

Methods: Data were collected using validated scales and trained interviewers. Analyses were conducted using bootstrapped structural equation models and fixed-effects linear regression models, controlling for age and household wealth.

Results: Reported experience of emotional abuse – both directly experienced and observed among household adults – was high in the present population (72.5% and 69%, respectively). Perceived stress among women was significantly higher if they were exposed to more emotional abuse during childhood (p?<?.001). Lower social support, worse family functioning and higher rates of polygynous marriage mediated pathways between emotional abuse exposure during childhood and adult perceived stress.

Conclusion: Future research should investigate whether social integration, identity formation and self-esteem underlie observed dynamics in sub-Saharan Africa. Efforts to promote social integration and support should target children currently experiencing emotional abuse, and may include child-targeted high quality television programing and adult-targeted media and celebrity campaigns.     

Emotional approach coping: Gender differences on psychological adjustment in young to middle-aged cancer survivors

Objective : The effect of emotional approach coping (EAC) varies by gender. However, this gender difference has not yet been investigated in cancer survivors. We investigated whether the effects of two kinds of EAC – emotional processing (EP) and emotional expression (EE) – vary by gender and whether EAC has effects above and beyond the effect of other coping strategies.

Design : EAC and other coping strategies were assessed at baseline in a sample of 248 young to middle-aged adult (between the age of 22 and 55) cancer survivors. One hundred and sixty-six survivors responded to psychological adjustment one year later.

Results : EAC had different relationships with Time 2 adjustment in men and women. Hierarchical regression analyses showed that for men, EE predicted lower intrusive thoughts and, for women, EP was associated with higher positive affect when other coping strategies and EE were controlled.

Conclusion : Gender differences held true in cancer survivors, and EAC was effective when other coping strategies were controlled. Further, EE was effective in reducing negative adjustment in men while EP was helpful in promoting positive adjustment in women.     

Social support coping style predicts women’s cortisol in the laboratory and daily life: the moderating role of social attentional biases

Background and Objectives: Social stress and associated coping responses can profoundly influence women’s stress physiology and health. Implicit social attentional biases can also influence psychological and physiological stress responses. The purpose of this study was to explore whether a coping style characterized by greater use of social support predicts indices of cortisol activity in laboratory and daily life contexts among female university students. We hypothesized that the relation of this coping style to cortisol activity would be moderated by women’s attentional biases.

Methods: Seventy-four women (M_age?=?19.44, range: 17.8–27.8, 64% White) completed an interpersonal stress task and an attentional bias task in the lab, along with a self-report coping inventory. Participants provided five saliva samples during the lab protocol, followed by three saliva samples per day for three consecutive weekdays. Outcome measures included cortisol response to lab tasks (AUCg), diurnal cortisol slope, diurnal AUCg, and cortisol awakening response (CARi).

Results: A coping style characterized by greater use of social support predicted lower lab AUCg and lower, flatter average diurnal cortisol slope for women with attentional avoidance compared to women with attentional vigilance (ps?<?.05).

Conclusions: Responding to stress by using social support is linked to lower cortisol responses to social stress and diurnal cortisol activity for women with implicit avoidance of social threat cues.     

Using circular questions to explore individual family member experiences of youth gender dysphoria in Australia

Abstract

Background: The number of young people reporting gender dysphoria is increasing worldwide, with gender dysphoria known to affect everyone in the family in unique ways. Previous research has highlighted the importance of family support and understanding; however, much less is known about individual and collective family member experiences, particularly for siblings under the age of 18?years.

Aims: This study sought to identify, describe and interpret individual family member experiences of youth gender dysphoria using semi-structured interviews, incorporating circular questioning, within a whole of family, clinical and wider social context.

Methods: Thirty-five individual family members living in Australia (nine young people aged 12-17?years experiencing gender dysphoria, 10 mothers, eight fathers, and eight siblings aged 11-17?years) were interviewed, exploring positive and negative experiences of youth gender dysphoria, within and outside of the family. Family relationships, support and healthcare experiences were also explored.

Results: All participants reported a mixture of positive and negative experiences of youth gender dysphoria. Levels of acceptance tended to change with the duration of transition, with most family members adapting with time. Siblings reported mixed experiences within the same family, with some struggling to adapt. Most family members felt that including the whole family in the healthcare of the young person was important, although dependent on individual circumstances and family context. Specialist gender care experiences were unanimously positive, although services were considered difficult to access.

Discussion: Family members reported shared and individual positive and negative experiences of youth gender dysphoria across social contexts. Accepting and facilitating gender transition for young people appeared to improve individual and family functioning. Most participants valued a whole of family approach within specialist healthcare. The use of circular questioning in the study helped dispel assumptions and facilitated curiosity for others’ experiences in the family.     

Profiles of dyadic adjustment for advanced prostate cancer to inform couple-based intervention

Objective: The purpose of the study is to describe from a relational perspective, partners’ psychological adjustment, coping and support needs for advanced prostate cancer.

Design: A mixed methods design was adopted, employing triangulation of qualitative and quantitative data, to produce dyadic profiles of adjustment for six couples recruited from the urology clinics of local hospitals in Tasmania, Australia.

Methods: Dyads completed a video-taped communication task, semi-structured interview and standardised self-report questionnaires.

Results: Themes identified were associated with the dyadic challenges of the disease experience (e.g. relationship intimacy, disease progression and carer burden). Couples with poor psychological adjustment profiles had both clinical and global locus of distress, treatment side-effects, carer burden and poor general health. Resilient couples demonstrated relationship closeness and adaptive cognitive and behavioural coping strategies. The themes informed the adaption of an effective program for couples coping with women’s cancers (CanCOPE, to create a program for couples facing advanced prostate cancer (ProCOPE-Adv).

Conclusion: Mixed method results inform the development of psychological therapy components for couples coping with advanced prostate cancer. The concomitance of co-morbid health problems may have implications for access and engagement for older adult populations in face-to-face intervention.     

The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

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.     

Men’s strategies for preserving emotional well-being in advanced prostate cancer: An interpretative phenomenological analysis

Objective: This study explores men with advanced prostate cancers’ own practices for promoting and maintaining emotional well-being using Interpretative Phenomenological Analysis.

Design: Five men with advanced prostate cancer participated in face-to-face, semi-structured, in-depth interviews.

Results: Within rich narratives of lost and regained well-being, two super-ordinate themes emerged – ‘living with an imminent and uncertain death’ and ‘holding on to life.’ Well-being was threatened by reduced sense of the future, isolation and uncertainty. Yet, the men pursued well-being by managing their emotions, striving for the future whilst enjoying life in the present, taking care of their families and renegotiating purpose. Running through participant’s accounts was a preference for taking action and problem-solving. Sense of purpose, social connectedness, and life engagement were revealed as concepts central to improving well-being, indicating areas which practitioners could explore with men to help them re-establish personal goals and life purpose.

Conclusions: The findings also add weight to the evidence base for the potential value of psychological interventions such as cognitive behaviour therapy and mindfulness in men with prostate cancer.     

“Why me?” – women’s use of spiritual causal attributions in making sense of breast cancer

Objective: This study addressed the role of positive (event is due to God’s Love or to God’s Will) and negative (event is due to God’s Anger) spiritual causal attributions in women’s adjustment to breast cancer.

Design: Ninety-three women diagnosed with breast cancer were assessed at six times from pre-diagnosis through two years post-surgery.

Main outcome measures: Women completed positive and negative measures of spiritual causal attributions (e.g. God’s Love), cognitive appraisals (e.g. threat), coping behaviour (e.g. avoidance) and well-being (e.g. distress).

Results: Positive spiritual attributions were consistently related to positive aspects of adjustment (e.g. positive appraisal, acceptance coping, and/or emotional well-being) while negative spiritual attribution was related to negative factors (e.g. appraisals of loss and uncontrollability, avoidance coping, and/or emotional distress). Path analyses revealed that the effects of positive and negative spiritual attributions on well-being were mediated by general cognitive appraisal and coping behaviour. Cross-lagged correlational analysis revealed a ‘downward spiral’ effect wherein the negative attribution of God’s Anger at pre-diagnosis predicted greater distress at 1 week pre-surgery which in turn predicted an increase in the negative attribution and so on across time.

Conclusion: Although positive spiritual attributions may help women maintain an attitude of hope and acceptance in the face of cancer, results indicate that the effects of negative spiritual attribution can play a significant role in undermining their well-being.     

Housing insecurity and intersecting social determinants of health among transgender people in the USA: A targeted ethnography

Abstract

Background: Housing is an important social determinant of health (SDOH). Transgender people face a unique blend of discrimination and compromised social services, putting them at risk for housing insecurity and associated public health concerns.

Aims: This targeted ethnography explores housing insecurity as a SDOH among transgender people in the U.S.

Methods: In-depth interviews were conducted with transgender people (n?=?41) throughout the U.S.A., identified through purposive sampling. A semi-structured guide was used to elicit personal stories and peer accounts of insecure housing experiences and coping strategies. Interviews were audio recorded and transcribed. Data was coded, sorted, and analyzed for key themes.

Results: Responses revealed pervasive housing insecurity and inter-related challenges. Respondents discussed how intersecting identities create unique constellations of vulnerability, which “intersect like a star.” Financial insecurity and interpersonal rejection were lead housing insecurity causes, often resulting in psychological strain, which was sometimes addressed with substances and sexual risk-taking. These factors were cyclically accompanied by financial and employment insecurity and a cascade of unmet social needs. Social support facilitated coping.

Discussion: Findings support increasing transgender housing security intervention resources that address intersecting and cyclical discrimination, trauma, housing, employment, and health issues.     

Emotion recognition and emotional theory of mind in chronic fatigue syndrome

Background: Difficulties with social function have been reported in chronic fatigue syndrome (CFS), but underpinning factors are unknown. Emotion recognition, theory of mind (inference of another's mental state) and ‘emotional’ theory of mind (eToM) (inference of another's emotional state) are important social abilities, facilitating understanding of others. This study examined emotion recognition and eToM in CFS patients and their relationship to self-reported social function.

Methods: CFS patients (n?=?45) and healthy controls (HCs; n?=?50) completed tasks assessing emotion recognition, basic or advanced eToM (for self and other) and a self-report measure of social function.

Results: CFS participants were poorer than HCs at recognising emotion states in the faces of others and at inferring their own emotions. Lower scores on these tasks were associated with poorer self-reported daily and social function. CFS patients demonstrated good eToM and performance on these tasks did not relate to the level of social function.

Conclusions: CFS patients do not have poor eToM, nor does eToM appear to be associated with social functioning in CFS. However, this group of patients experience difficulties in emotion recognition and inferring emotions in themselves and this may impact upon social function.