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We review work on disclosure to others about one’s chronic illness condition and challenges in the management of illnesses, focusing on the period of adolescence and emerging adulthood. Adolescents and young adults with a chronic illness who self-disclose to others (beyond parents) that they have a chronic illness are often quite strategic as to how much to disclose and to whom. We then review work on routine disclosures about challenges in the management of chronic illnesses that often occur between parents and adolescents and young adults and romantic partners that can elicit support. We focus our treatment on the illness context of type 1 diabetes, as there is little research on routine disclosure with other illness conditions. We conclude by linking this work to broader models of disclosures for health decisions, recommend that interventions that ease the burden of disclosure may be beneficial, and suggest directions for future research.
This chapter examines ageing and chronic illness among LGBTIQ people. First, this chapter discusses the relative visibility/invisibility of LGBTIQ ageing, alongside introducing and critiquing the prevalent neoliberal concept of successful ageing. Following this, the chapter engages with cohort effects (e.g., generational differences) in LGBTIQ populations and their impacts on ageing experiences. The chapter also reviews research on chronic illness in LGBTIQ populations, with specific reference to dementia. LGBTIQ people’s experiences of dying and bereavement are also discussed, with specific reference to AIDS-related bereavement (in the 1980s) and ‘bereavement overload’ and partner loss, including the possibility of ‘disenfranchised grief’.
Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent–sibling illness-related communication may contribute to siblings’ capacity to cope.
Objectives
In this study, we aimed to explore parent–sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants’ responses according to illness group (chronic illness vs. LLCs).
Methods
We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.
Results
Two-thirds of siblings expressed satisfaction with their family’s illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.
Significance of results
Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child’s maturity level, distress, and age.
Why is it so difficult for older women in our society to feel that they are seen and heard? What matters in our society is not the quality of a woman’s mind, but her appearance of aging. Yet older women are still trying to find meaning in life, despite the impact on their mental and physical health of the menopause, children leaving home, retirement from work, problems in relationships, caring for others and coping with chronic ill health. Women carry a heavy burden of intergenerational caring – for partners, parents, children and grandchildren. As they age, women experience sequential losses in life, of roles that have been important to us. Suicide rates are rising in older women for reasons unknown, and depression can be more severe. Electroconvulsive therapy (ECT) can be life-saving. Alzheimer’s disease is twice as common in women, but we do not know why. Given the massive impact of dementia on women, research is still inadequately funded. Together with younger women we must consider what a feminist old age might look like and, as we age, work at staying engaged with the world. There are things older women can both share with, and learn from, younger women.
This study aims to assess changes in long-term care (LTC) residents’ quality of life (QoL) before and during the COVID-19 pandemic. A pre-test post-test study of 49 QoL measures, across four dimensions from the interRAI self-reported QoL survey, was conducted. Secondary data from 2019 (n = 116) and 2020 (n = 128) were analysed to assess the change in QoL. A significant decline in 12 measures was observed, indicating a change in QoL of LTC residents during the pandemic. Social life was the dimension mostly affected with residents reporting less opportunities to spend time with like-minded residents, explore new skills and interests, participate in meaningful religious activities, and have enjoyable things to do in the evenings. Several measures of personal control, staff responsiveness and care, and safety also demonstrated a significant change. The results can inform future strategies for pandemic and outbreak preparedness. Balancing the safety of residents with attention to their QoL should be a priority moving forward.
Individual managers may make judgements and decisions which reflect social expectations rather than organisational policy. Society generally requires that individuals with an illness take leave from their work, seek medical assistance and return when they are well. This is not possible for individuals with chronic illness. By its nature, chronic illness has no cure. Individuals who are diagnosed with diseases such as rheumatoid arthritis, diabetes or inflammatory bowel disease and who also undertake paid employment may need to disclose their illness and seek some form of accommodation in their workplace. Understanding attitudes of managers plays a significant role in the success of managing work and chronic illness. This article examines the working experiences of women with chronic illness where the attitudes of managers were less understanding.
Childhood maltreatment can result in lifelong psychological and physical sequelae, including coronary artery disease (CAD). Mechanisms leading to increased risk of illness may involve emotional dysregulation and shortened leukocyte telomere length (LTL).
Methods
To evaluate whether (1) childhood maltreatment is associated with shorter LTL among older adults with CAD or other chronic illnesses; (2) sex and/or CAD status influence these results; and (3) symptoms of anxiety, depression, and stress moderate or mediate the association between childhood maltreatment and LTL, men and women (N = 1247; aged 65 ± 7.2 years) with and without CAD completed validated questionnaires on childhood maltreatment, symptoms of depression, anxiety, and perceived stress. LTL was measured using quantitative polymerase chain reaction. Analyses included bivariate correlations, hierarchical regressions, and moderation/mediation analyses, controlling for sociodemographic and lifestyle variables.
Results
Childhood maltreatment was associated with significantly shorter LTL (r = −0.059, p = 0.038, b = −0.016, p = 0.005). This relation was not moderated by depression, anxiety, nor perceived stress, though there was mitigated evidence for absence of a maltreatment-LTL relation in men with CAD. Stress perception (but not anxiety or depression) partially mediated the relation between childhood maltreatment and LTL [Indirect effect, b = −0.0041, s.e. = 0.002, 95% CI (−0.0085 to −0.0002)].
Conclusions
Childhood maltreatment was associated with accelerated biological aging independently of patient characteristics. Emotional dysregulation resulting in chronic stress may contribute to this process. Whether stress management or other interventions may help prevent or slow premature aging in those who have suffered maltreatment requires study.
By understanding health-care financing and organization, health-care professionals can provide more effective care and achieve financial success. This chapter covers basic insurance principles and key business operations concepts. There is a focus on Medicare (including Medicare Advantage) and Medicaid. Hospital and professional payment methods are explained. Steps that may help reduce health-care costs, such as better chronic care management, are presented. Whether the United States truly has a health-care system, the social spending crowd-out of health-care spending, and a brief international perspective are presented.
Lower-income older adults with multiple chronic conditions (MCC) are highly vulnerable to food insecurity. However, few studies have considered how health care access is related to food insecurity among older adults with MCC. The aims of this study were to examine associations between MCC and food insecurity, and, among older adults with MCC, between health care access and food insecurity.
Design:
Cross-sectional study data from the 2019 Behavioral Risk Factor Surveillance System survey.
Setting:
Washington State, USA.
Participants:
Lower-income adults, aged 50 years or older (n 2118). MCC was defined as having ≥ 2 of 11 possible conditions. Health care access comprised three variables (unable to afford seeing the doctor, no health care coverage and not having a primary care provider (PCP)). Food insecurity was defined as buying food that did not last and not having money to get more.
Results:
The overall prevalence of food insecurity was 26·0 % and was 1·50 times greater (95 % CI 1·16, 1·95) among participants with MCC compared to those without MCC. Among those with MCC (n 1580), inability to afford seeing a doctor was associated with food insecurity (prevalence ratio (PR) 1·83; 95 % CI 1·46, 2·28), but not having health insurance (PR 1·49; 95 % CI 0·98, 2·24) and not having a PCP (PR 1·10; 95 % CI 0·77, 1·57) were not.
Conclusions:
Inability to afford healthcare is related to food insecurity among older adults with MCC. Future work should focus on collecting longitudinal data that can clarify the temporal relationship between MCC and food insecurity.
To explore the combined effect of pediatric sickle cell disease (SCD) and preterm birth on cognitive functioning.
Methods:
Cognitive functioning was examined in children ages 6–8 with high risk SCD genotypes born preterm (n = 20) and full-term (n = 59) and lower risk SCD genotypes/no SCD born preterm (n = 11) and full-term (n = 99) using tests previously shown to be sensitive to SCD-related neurocognitive deficits. Factorial ANOVAs and log linear analyses were conducted to examine the relationship between SCD risk, preterm birth status, and cognitive outcomes. Continuous scores were examined for specific tests. Children were categorized as having an abnormal screening outcome if at least one cognitive score was ≥1.5 standard deviations below the population mean.
Results:
Children with elevated risk due to high risk SCD and preterm birth performed worse than other groups on a test of expressive language but not on tests that emphasize processing speed and working memory. There was a three-way interaction between preterm status, SCD risk, and abnormal screening outcome, which was largely driven by the increased likelihood of abnormal cognitive scores for children with high risk SCD born preterm.
Conclusions:
The combination of SCD and preterm birth may confer increased risk for language deficits and elevated rates of abnormal cognitive screenings. This suggests that neurodevelopmental risk imparted by comorbid SCD and preterm birth may manifest as heterogenous, rather than specific, patterns of cognitive deficits. Future studies are needed to clarify the domains of cognitive functioning most susceptible to disease-related effects of comorbid SCD and preterm birth.
The coronavirus (COVID-19) pandemic and mandated physical distancing requirements significantly impacted volunteer programs for older persons with many long-standing programs either ceasing altogether or pivoting to connecting through virtual technologies. In this study, we collected qualitative interview data from 23 clients and 33 volunteers to investigate their experiences during the COVID-19 pandemic and the effects on the volunteer–client relationship. Three themes were identified: pandemic emotions, negotiating social interactions, and growing through the COVID-19 pandemic. These findings provide important insights into the experiences of hospice organizations and their volunteers and clients during the COVID 19 pandemic, further highlighting the importance of acknowledging both older persons’ vulnerability and their resilience, of building in compassionate community approaches to care, and of finding innovative ways to foster volunteer–client relationships during times when physical visiting is not possible.
The emergence of SARS-CoV-2 has enormously impacted healthcare systems around the world. Both patients and health care professionals have been subjected to a novel stressor which affects their everyday life and functioning. This issue is especially important to patients suffering from chronic diseases which had already been exposed to a psychological strain related to their primary diagnosis. As chronically ill patients are depending on the availability of a specific treatment i.e. in need of specific healthcare facilities and have more reasons to worry about their future and hence be more prone to suffer adverse psychological consequences than the general population.
Objectives
In this study we aimed to examine whether the psychological results of the pandemic affect chronically ill and whether the specific illness and other demographic factors account for any changes in perceived stress levels.
Methods
An online questionnaire has been distributed to 4 groups (n=369): 92 psoriasis patients, 73 dialysis patients, 100 patients after kidney transplantation and 104 multiple sclerosis patients. The study was conducted during the pandemic in Poland (June-July 2020). Perceived stress levels were measured by the Perceived Stress Scale (PSS).
Results
The preliminary results suggest elevated perceived stress levels among the studied groups. As the data are currently under statistical evaluation specific statistical conclusions are to be expected in November 2020.
Conclusions
As the described study was conducted during the SARS-CoV-2 pandemic in Poland, it stands to reason that the epidemiological situation affected the levels of perceived stress among chronically ill patients.
Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone.
Method
A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire.
Results
An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions.
Significance of results
Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.
Chronic health conditions are hypothesized to disrupt the typical trajectory of child and adolescent development, and subsequently lead to increased levels of mental illness. However, due to methodological limitations in existing studies, this theory remains to be fully substantiated by empirical research. This study aimed to more thoroughly test hypotheses in the field. This study used data from the Avon Longitudinal Study of Parents and Children to examine the co-occurrence of mental illness among children with chronic illness in late childhood into early adolescence and explore mediating factors in these outcomes. Children with chronic health problems presented with a disproportionate rate of psychiatric illness at 10 years, and these chronic health problems continued to be associated with poor mental health outcomes at 13 years and 15 years. These outcomes were mediated by high levels of peer victimization and health-related school absenteeism. This study suggests that chronic illness may impact on functioning and social development in early adolescence, and consequently lead to increased rates of mental illness. Examining rates of school absenteeism and peer victimization may be key to identifying children at risk over time.
While it is known that patients with schizophrenia recognize facial emotions, specifically negative emotions, less accurately, little is known about how they misattribute these emotions to other emotions and whether such misattribution biases are associated with symptoms, course of the disorder, or certain cognitive functions.
Method
Outpatients with schizophrenia or schizoaffective disorder (n = 73) and healthy controls (n = 30) performed a computerised Facial Emotion Attribution Test and Wisconsin Card Sorting Test (WCST). Patients were also rated on the Positive and Negative Syndrome Scale (PANSS).
Results
Patients were poor at recognizing fearful and angry emotions and attributed fear to angry and angry to neutral expressions. Fear-as-anger misattributions were predicted independently by a longer duration of illness and WCST perseverative errors.
Conclusion
The findings show a bias towards misattributing fearful and angry facial emotions. The propensity for fear-as-anger misattribution biases increases as the length of time that the disorder is experienced increases and a more rigid style of information processing is used. This, at least in part, may be perpetuated by subtle fearfulness expressed by others while interacting with people with schizophrenia.
This chapter focuses on reviewing common concerns that arise for school-age children, including but not limited to risk for certain types of accidents and injuries, nonproductive parenting styles, and difficulties communicating with peers about their chronic illness. Clinical vignettes are utilized to help illustrate clinical strategies for assisting parents with balancing safety concerns and allowing children to experience natural consequences, as well as providing example activities to help children discuss their illness with classmates on reentry into the classroom, common problems that may arise during clinical work with young children with medical problems. This section is then followed by a discussion of the formalized school accommodations that can be utilized to help a child successfully engage in the school curriculum. At the end of this chapter, resources are provided, with a sample 504 plan and key strategies when a child demonstrates school refusal.
Project HOPE, a global health and humanitarian assistance organization, has responded to some of the world’s largest natural disasters and humanitarian and health crises for more than 60 years. As natural disasters increase in frequency and intensity, otherwise effective health systems can become compromised, and - although less visible than traumatic injuries – populations with chronic diseases can be significantly impacted. Emergency preparedness and response efforts must adapt to address issues around continuity of care, access to pharmaceuticals, strengthening cold chain mechanisms, restoring supply chains, and educating patients with chronic illnesses on emergency preparedness. Project HOPE designs medical teams and supply donations to work alongside, rather than parallel to, existing health care infrastructure, laying the foundation for the long-term recovery of the health system.
To examine the contributions of two aspects of executive functioning (executive cognitive functions and behavioral control) to changes in diabetes management across emerging adulthood.
Methods:
Two hundred and forty-seven high school seniors with type 1 diabetes were assessed at baseline and followed up for 3 years. The baseline assessment battery included performance-based measures of executive cognitive functions, behavioral control, IQ estimate (IQ-est), and psychomotor speed; self-report of adherence to diabetes regimen; and glycated hemoglobin (HbA1c) assay kits as a reflection of glycemic control.
Results:
Linear and quadratic growth curve models were used to simultaneously examine baseline performance on four cognitive variables (executive cognitive functions, behavioral control, IQ, and psychomotor speed) as predictors of indices of diabetes management (HbA1c and adherence) across four time points. Additionally, general linear regressions examined relative contributions of each cognitive variable at individual time points. The results showed that higher behavioral control at baseline was related to lower (better) HbA1c levels across all four time points. In contrast, executive cognitive functions at baseline were related to HbA1c trajectories, accounting for increasingly more HbA1c variance over time with increasing transition to independence. IQ-est was not related to HbA1c levels or changes over time, but accounted instead for HbA1c variance at baseline (while teens were still living at home), above and beyond all other variables. Cognition was unrelated to adherence.
Conclusions:
Different aspects of cognition play a different role in diabetes management at different time points during emerging adulthood years.
The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer.
Method
We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis:
• Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium
• Psychological: depression, anxiety, prognosis, and dignity
• Social: caregiver burden, isolation, and financial
• Spiritual: spiritual distress
Results
The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer.
Significance of results
The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.
Demoralization is prevalent in patients with life-limiting chronic illnesses, many of whom reside in rural areas. These patients also have an increased risk of disease-related psychosocial burden due to the unique health barriers in this population. However, the factors affecting demoralization in this cohort are currently unknown. This study aimed to examine demoralization amongst the chronically ill in Lithgow, a town in rural New South Wales, Australia, and identify any correlated demographic, physical, and psychosocial factors in this population.
Method
A cross-sectional survey of 73 participants drawn from Lithgow Hospital, the adjoining retirement village and nursing home, assessing correlating demographic, physical, psychiatric, and psychosocial factors.
Results
The total mean score of the DS-II was 7.8 (SD 26.4), and high demoralization scores were associated with the level of education (p = 0.01), comorbid condition (p = 0.04), severity of symptom burden (p = <0.001), depression (p = <0.001), and psychological distress (p = <0.001). Prevalence of serious demoralization in this population was 27.4% according to a cutoff of a DS-II score ≥11. Of those, 11 (15%) met the criteria for clinical depression, leaving 9 (12.3%) of the cohort demoralized but not depressed.
Significance of results
Prevalence of demoralization was high in this population. In line with the existing literature, demoralization was associated with the level of education, symptom burden, and psychological distress, demonstrating that demoralization is a relevant psychometric factor in rural populations. Further stratification of the unique biopsychosocial factors at play in this population would contribute to better understanding the burdens experienced by people with chronic illness in this population and the nature of demoralization.