A Communal Coping Intervention for Couples Managing Chronic Illness: Proof-of-Concept Study.

Introduction: Communal coping is an interpersonal coping strategy defined as the appraisal of a problem as shared and collaboration to manage it. Despite evidence establishing links of communal coping to health, few interventions have involved communal coping. This study seeks to establish proof of concept that an intervention rooted in communal coping theory can impact couple members' communal coping and intermediary outcomes. Methods: Couples (n = 40) in which one person has type 2 diabetes were randomly assigned to intervention versus control in a parallel randomized trial with 1:1 allocation. The intervention consisted of a single session focused on discussion of shared stressors, communal coping education, and collaborative implementation intentions followed by 7 days of text message reinforcement. Couples were interviewed in-person, received the intervention or active control, and completed 7 daily questionnaires. Communal coping and intermediary outcomes associated with communal coping were assessed daily. Feasibility and acceptability were also assessed. Results: The intervention increased reports of both patient and partner shared appraisal and collaboration and impacted some intermediary outcomes of communal coping. Compared to control, intervention participants reported greater perceived partner responsiveness, patient support receipt, and partner confidence in patient illness self-efficacy. Discussion: This study provides initial proof of concept that an intervention based on communal coping theory can increase couples' communal coping-both shared appraisal and collaboration. Additionally, the intervention was able to impact some intermediary outcomes that may be linked to downstream health outcomes for both patients and partners.

Experiences of students with chronic illness in university education in Ireland.

OBJECTIVE: The aim of this study was to explore the experiences of university students with a chronic illness in Ireland. The study also aimed to gain insight into students' experiences with Disability Support Services (DSS) and identify gaps where additional supports and resources are needed. DESIGN: Cross-sectional qualitative study. METHODS: Fourteen students from three Irish universities participated in semi-structured interviews. The interviews were audio-recorded, transcribed, and analysed through the six-step process of reflexive thematic analysis. RESULTS: Four themes were developed: (1) The burden of managing a chronic illness alongside university education; (2) Interruptions, disruptions and alterations to college life; (3) Flexible supports for fluctuating conditions; (4) Achieving in educating while living with a chronic illness. CONCLUSIONS: Participants reported a physical and emotional burden. Despite engaging in rigorous management strategies, many participants missed lectures and socialising with peers. Some found the supports from DSS to be useful, however many were unsure if they qualified for support, or found the supports available to be generic and inadequate for their needs. There is significant scope for the delivery of both teaching and DSS to be improved for this cohort, ensuring that all students, regardless of their health status, have equal opportunities for success.

Experiences of Patients Living in a Unique Leprosy Hospice in Greece: An Interpretative Phenomenological Analysis.

BACKGROUND: Hansen's disease, or leprosy, has a long-standing presence in human history, and our study uniquely delves into the experiences of individuals who are among the last survivors of this condition in Greece. During the early 1930s, patients with Hansen's disease from Spinalonga, an isolated location in Crete, were moved to a medical facility in Athens. This event represents a significant historical change in the management and treatment of the disease. Following Spinalonga's closure, a Sanatorium emerged, evolving into Greece's sole Hansen's disease center and the present-day refuge for patients, underscoring the enduring stigma and abandonment associated with the disease. METHOD: Our study, conducted through six interviews with unstructured schedules, provides a unique opportunity for these individuals to share personal insights, offering a profound understanding of their interpretations and experiences. RESULTS: Through interpretative phenomenological analysis, we unearthed four superordinate themes: the pivotal nature of the diagnosis, the visible impact of the disease on the body, the stigma associated with leprosy and its effects on individuals, and the significance of 'home' as a place of solace and acceptance. CONCLUSIONS: These themes collectively depict the deep emotional trauma experienced by the participants, shedding light on the enduring impact of historical stressors, confinement practices, and the challenges of living with a devalued identity, shaping their profound sense of self.

Young adults living with chronic illness: disclosure strategies and peers' understanding.

PURPOSE: Many young adults living with chronic illness fear being perceived as different by their peers and excluded from social activities. This forces them to consider whether to disclose or conceal their illness. This article analyses young adults' disclosure strategies and links them to peers' understanding of illness. MATERIALS AND METHODS: The explorative study is based on episodic interviews with sixty young adults living with chronic illnesses (type 1 diabetes, cancer, chronic inflammatory bowel disease or a rare disease) and thirty peers. The interviews were thematically coded. The young adults' statements were compared to the peer perspectives on a case-by-case basis. RESULTS: We identified three groups of young adults: 1) those who are generally open with peers about their illness and its subjective meaning; 2) those who share selected health-related information's with selected peers; 3) those who refrain from active disclosure and are unsure how they might talk about their illness when it becomes apparent. Our findings also indicate that peers differ in the sophistication of their illness perceptions and the meaning they ascribe to living with a chronic illness. CONCLUSION: Trainings should target both young adults and peers, and should assist both sides in talking about (serious) chronic illness.

Rehabilitation professionals should find ways to involve peers in caring for chronically ill young adults.Rehabilitation professionals should step up their efforts to destigmatize chronic illness.Disclosure/non-disclosure of chronic diseases should be given greater consideration in rehabilitation and health care.If young adults choose not to disclose their chronic illness, rehabilitation professionals should treat this as neutral and analyse the subjective functionality of such a decision.

New Chaotic Reality: Creative Writing Workshops for Long COVID Patients.

In a widely cited 2017 study, Robinson et al. (2017) found that 'emotionally expressive' writing makes physical wounds heal faster when compared to writing that did not engage the emotions. The Writing Long COVID project at Aberystwyth University engaged similar territory in a recent pilot study. Participants' writing activities explored how literary production can affect a person's experience of this new chronic condition, as well as contribute to our understanding of its symptoms. In this short essay, I show how we designed a course of short-duration online workshops that increased accessibility for people with Long COVID-related fatigue. I also argue that future Long COVID creative activities should let their timing, venue, content, and structure be influenced by the preferences of the Long COVID patient. The preliminary study suggests that the traditional parameters of the writing workshop, including its duration, could deter participation in potentially beneficial creative activities.

Psychotherapy and chronic pain management: a quantitative study evaluating the contribution of psychotherapy to quality of life and treatment compliance in chronic disease patients.

BACKGROUND: The psychology of pain is an important field of study that focuses on understanding the psychological factors associated with pain and developing effective approaches to its management. Pain is a complex sensation that affects a person's physical and mental well-being, and psychological factors can have a significant impact on the perception, response and coping with pain. This research study examines the contribution of psychotherapy in managing chronic pain and improving quality of life and treatment adherence. PARTICIPANTS AND PROCEDURE: The sample consisted of 87 participants who completed the McGill Pain Assessment Questionnaire, SF-36 Quality of Life questionnaire, and the Morisky Medication Adherence Scale (MMAS-8) questionnaire. Two groups were created: one group received psychotherapy to manage pain and illness, while the other group either did not receive psychotherapy or had no contact with this therapeutic method. RESULTS: The results showed that patients who received psychotherapy had higher scores in the dimensions of mental health, vitality, general health, physical pain, physical functioning, and social functioning compared to patients who did not receive psychotherapy. Statistical analysis confirmed significant differences between the two groups. Additionally, psychotherapy was associated with higher treatment adherence, as indicated by the mean scores of patients receiving psychotherapy compared to those who did not. CONCLUSIONS: This suggests that psychotherapy can contribute to increased treatment adherence. The results clearly show that patients who received psychotherapy have significantly higher levels of mental health, vitality, general health and functioning compared to patients who did not receive psychotherapy.

Homelessness and Type 2 Diabetes: A Qualitative Study of Facilitators and Barriers to Self-Management and Medication Adherence.

PURPOSE: In this study, we explore the barriers and facilitators to diabetes medication adherence and self-management for people with type 2 diabetes who have experienced homelessness. METHODS: We conducted five focus groups and two interviews with 26 participants. Our multi-disciplinary analysis team utilized principles of grounded theory and conducted thematic analysis with an inductive, iterative process to identify central themes. RESULTS: The majority of participants identified as Black/African American and over half stayed in shelters or had no steady place to stay at enrollment. Three key themes emerged regarding medication adherence and diabetes self-management for people who have experienced homelessness: personal autonomy and security, predictability and stability, and supportive, knowledgeable relationships (both social and medical). We define personal autonomy and security as individual agency and choice when making decisions related to one's health and well-being as well as protection from risk or harm to one's physical or psychological well-being, belongings, or means of income. Predictability and stability take place through the development of a system of connections and routines built over time where individuals can reliably adopt and maintain diabetes self-management activities. Supportive, knowledgeable relationships include medical and social relationships that offer encouragement, information, and hands-on care promoting diabetes self-management and connection to clinical care and resources. Participants also highlighted a "domino effect" where a cascade of events negatively and consequently impacted their health and well-being. We describe the interactions of these themes, the intersection of structural vulnerability and individual social risks, and resulting impacts on medication adherence and diabetes self-management. CONCLUSIONS: Our findings highlight the structural vulnerabilities impacting people experiencing homelessness and identify inflection points of opportunity at structural and individual levels to strengthen diabetes medication adherence and self-management. This understanding can inform policy change and future tailored diabetes interventions.

Latent profiles and predictors of barriers to care in Swiss children and adolescents with rare diseases.

OBJECTIVE: Children and adolescents with rare diseases face significant barriers when accessing healthcare. We aimed to assess and predict these barriers and investigate associations with health-related quality of life (HRQoL). METHOD: We conducted a cross-sectional survey of Swiss parents (N = 189) of children with rare diseases including the Barriers to Care Questionnaire (BCQ), containing six barriers and the Pediatric Quality of Life Inventory (PedsQL). Latent profile analysis (LPA) was used to uncover distinct classes, which were compared using chi-square tests and Mann-Whitney U tests. Relevant medical and sociodemographic class predictors were identified using Elastic Net regression, followed by regression analysis to investigate their role in predicting barriers to care and examine the effects of these classes on HRQoL. RESULTS: Two distinct groups were identified, a higher barriers class (59%) and a lower barriers class (41%). In the higher barriers class, participants showed elevated scores across all subscales and specifically on pragmatics and expectations. More barriers to care were linked to a nonstable disease course (OR = 2.27, p = .002) and a diagnosis after the age of 3 months (OR = 2.17, p = .006). Individuals in the higher barriers class exhibited more psychological comorbidities (p = .044), congenital malformations/deformations/chromosomal abnormalities (p=.042), and medical misdiagnoses (p = .006). Children in the higher barriers class had significantly lower PedsQL scores compared to the lower barriers class (p <.05). CONCLUSION: This study highlights the need for comprehensive assessment of barriers to pediatric care in rare diseases, offering potential entry points for targeted interventions.

Beyond presence of symptoms: Self-reported psychosocial distress interference among outpatient youth with cancer and other life-limiting conditions.

BACKGROUND: Youth with life-limiting conditions face significant psychosocial challenges (e.g., symptoms of anxiety, depression, and pain) throughout illness and treatment. Without appropriate intervention, this can negatively affect long-term outcomes (e.g., disease management, health-related quality of life). Prompt identification and appropriate attention to distress can mitigate these effects. We aimed to determine the prevalence and severity of distress interference among outpatient youth with cancer and other life-limiting conditions, using the Checking IN screener. PROCEDURE: Within a larger study across four hospital centers, English-speaking pediatric outpatients aged 8-21, and a caregiver-proxy-reporter, completed a brief distress screener. Descriptive analyses were used to characterize the sample and evaluate reported distress symptoms. RESULTS: Checking IN was completed by 100 participants, aged 8-21 (M = 14.27, SD = 3.81); caregivers completed an equivalent proxy screener. Youth most frequently endorsed fatigue (moderate: n = 50, 50.0%; high: n = 21, 21.0%), paying attention (moderate: n = 45, 45.0%; high: n = 16, 16.0%), and sleep difficulty (moderate: n = 46, 46.0%; high: n = 13; 13.0%) as problematic. Caregivers proxy reported fatigue (moderate: n = 46, 46.0%; high: n = 32, 32.0%), worry (moderate: n = 56, 56.0%; high: n = 10, 10.0%), and sleep difficulty (moderate: n = 47, 47.0%; high: n = 14; 14.0%) as most problematic. Group differences between youth and caregiver responses were not significant. CONCLUSIONS: Youth self-report via Checking IN can detect psychosocial distress interference. By directing resources based on real-time assessment of symptom interference, there is potential to simplify outpatient psychosocial screening and improve referral timeliness and specificity, thus allowing for more effective attention to evolving symptoms of distress.

Obstructive sleep apnea illness perception relative to other common chronic conditions.

STUDY OBJECTIVES: Obstructive sleep apnea (OSA) is a common chronic medical condition that results in impaired daytime functioning. While the link between OSA and cardiovascular disease is important, there has been increasing recognition of the impact of OSA on daytime functioning and experience. Better insight into illness perceptions can help better understand how to initiate and maintain treatment. METHODS: Data from two OSA clinical trials were examined. The baseline Respiratory Event Index (REI) was obtained from diagnostic sleep testing. The Brief Illness Perception Questionnaire (BIPQ) assesses the cognitive and emotional representation of illness and was administered at baseline along with the Epworth Sleepiness Scale (ESS) and the Pittsburgh Sleep Quality Index (PSQI). RESULTS: 523 patients diagnosed with OSA were studied. The sample had a mean age of 51.1 ± 16.6, mean REI of 28.6 ± 17.9/h, and mean body mass index of 32.8 ± 15.5 kg/m^2. The mean BIPQ total score at baseline was 43.3 ± 11.3. BIPQ scores were significantly correlated with sleepiness and sleep quality but not with REI. Relative to other common chronic conditions with major comorbidities, BIPQ scores for patients with OSA were higher on consequences, identity, concern, and emotional representation dimensions. CONCLUSIONS: The study shows that Veterans with OSA report elevated illness perceptions across several dimensions at levels as high, or higher, than other common chronic conditions. Implications for clinical practice are that it is important to ask patients about their understanding of illness across several dimensions to appreciate better patient needs and preferences.

The Influence of Patient-Provider Communication on Self-Management Among Patients With Chronic Illness: A Systematic Mixed Studies Review.

AIM: To explore the influence of patient-provider communication on patient self-management of chronic illness. DESIGN: Systematic Mixed Studies Review. DATA SOURCES: CINAHL, Google Scholar, EMBASE and PubMed were searched until March 2024. METHODS: Employed a result-based convergent design and the Mixed Method Appraisal Tool to evaluate studies. Narrative analysis, quantitative studies and thematic analysis for qualitative studies and overall results. RESULTS: Thirteen articles published between 2003 and 2023 were included. Chronic illnesses studied: diabetes, heart failure, hypertension, chronic obstructive pulmonary disease and asthma. Data synthesis yielded the overarching theme: adaptive interpersonal communication. An approach that adapts communication content to each patient's unique needs, employs verbal and nonverbal communication, builds a connection and establishes patient rapport. CONCLUSION: Available evidence suggests that patient-provider communication influences chronic illness self-management. A provider's ability to adjust and tailor their communication style is an important factor in helping patients to achieve optimal self-management. Future research should explore this phenomenon in other common chronic illnesses not included in this review. Additionally, research on the patient's role in this process could help improve patient-provider communication. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings from this review have significant implications for shared and participatory decision making, where patients and providers collaborate to develop plans of care for patients to achieve optimal self-management. Additionally, this review can contribute to the development of educational content and communication strategies for nurses and all healthcare professionals caring for patients with chronic illnesses. IMPACT: This is the first mixed studies systematic review to describe the influence patient-provider communication on patient self-management of chronic illness. These findings consolidate existing evidence, providing a pathway for practical application to clinical practice and the potential to significantly impact the delivery of patient-centred care and healthcare quality. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Effectiveness of interventions for informal caregivers of people with end-stage chronic illness: a systematic review.

BACKGROUND: People living with advanced, non-malignant chronic conditions often have extensive and complex care needs. Informal or family caregivers often provide the care and support needed by those with advanced chronic conditions at home. These informal caregivers experience many challenges associated with their caring role, which can impact their own wellbeing. Whilst there is growing evidence around the impact on carers, guidance on support for informal caregivers of patients with advanced, non-malignant, chronic conditions is lacking, with little evidence available on effective psychosocial carer interventions. This systematic review explored existing interventions for caregivers of those with advanced, non-malignant, chronic illness, in order to assess the effectiveness of these interventions in improving psychosocial outcomes. METHODS: Electronic databases, Medline, CINAHL, EMBASE, and PsycINFO, were searched up to the end of March 2023. Studies meeting the inclusion criteria, focusing on interventions to improve psychosocial outcomes, such as depression, anxiety, quality of life, and caregiver burden, in this cohort of caregivers were included. Data were extracted regarding study setting, design, methods, intervention components, and outcomes. Risk of bias and quality assessment were conducted. RESULTS: A total of 5281 articles were screened, ultimately identifying 12 studies for inclusion, reported in 13 publications. A narrative synthesis revealed mixed results. Psychosocial interventions resulted in more significant improvements in psychosocial outcomes than psychoeducational or support interventions, with interventions for carer-patient dyads also reflecting more positive outcomes for caregivers. Evidence-based interventions, guided by an appropriate theoretical model, were reportedly more effective in improving caregiver outcomes. Differences in outcomes were related to intervention development, design, delivery, and outcome assessment. CONCLUSIONS: This review, to our knowledge, is the first to explore the effectiveness of interventions in improving psychosocial outcomes for caregivers of those with advanced, non-malignant, chronic conditions. The review highlights the need for more robust, sufficiently powered, high-quality trials of evidence-based interventions for caregivers of people with advanced chronic illness. Optimal intervention duration and frequency of sessions are unclear and need further exploration.

Hysterectomy and medical financial hardship among U.S. women.

OBJECTIVE: Hysterectomy is one of the common surgical procedures for women in the United States. Studies show that hysterectomy is associated with elevated risk of developing chronic conditions, whichmay cause financial toxicity in patients. This study aimed to assess whether women who underwent hysterectomy had a higher risk of experiencing medical financial hardship compared to women who didn't. METHODS: Using data on 32,823 adult women from the 2019 and 2021 waves of the National Health Interview Survey, we estimated binomial and multinomial logistic regressions to assess the relationship between hysterectomy and financial hardship, defined as problems paying or unable to pay any medical bills. Further, we performed a Karlson-Holm-Breen (KHB) decomposition to examine whether the association could be explained by chronic comorbidity. RESULTS: While the prevalence of financial hardship was 13.6 % among all women, it was 16.2 % among women who underwent a hysterectomy. The adjusted odds of experiencing medical financial hardship among women with a hysterectomy were 1.36 (95 % CI: 1.22-1.52) times that of their counterparts who did not have a hysterectomy. The KHB decomposition suggested that 34.5 % of the size of the effect was attributable to chronic conditions. Women who had a hysterectomy were also 1.45 (95 % CI: 1.26-1.67) times more likely to have unpaid medical debts. CONCLUSIONS: Our results suggested that women, who underwent a hysterectomy in the US, were vulnerable to medical financial hardship. Policy makers and health professionals should be made aware of this issue to help women coping against this adversity.

Randomized pilot trial of cell phone support to improve medication adherence among adolescents and young adults with chronic health conditions.

Introduction: Adolescents and young adults (AYA) living with chronic medical conditions often struggle to develop medication adherence skills. This pilot trial evaluated the impact of a mobile health coaching intervention, Cell Phone Support (CPS), on medication adherence. Methods: Interventions in this randomized trial were CPS delivered by phone calls (CPS-C), CPS delivered by text messages (CPS-T), or automated text message reminders (ATR). Participants were AYA with different chronic medical conditions (i.e., sickle cell disease, solid organ transplant, type 2 diabetes), aged 15-20 years (N = 34). We examined the feasibility, acceptability, and preliminary efficacy of each intervention. Results: We examined the feasibility, acceptability, and preliminary efficacy of both CPS interventions. CPS was feasible and acceptable. There was evidence that participants found CPS to be more useful than ATR. In this pilot trial, participants receiving CPS reported relatively stronger increases in adherence, compared to those assigned to ATR. CPS-C slightly outperformed CPS-T. Conclusions: Providing coaching to AYA struggling with illness self-management via their cell phones may promote their acquisition of medication adherence skills. Although larger studies are needed to confirm the results of this pilot study, phone calls and text messages are both promising modalities for delivering human cell phone support. Trial registration: This trial was registered prospectively at ClinicalTrials.gov (NCT04241627) on 1/27/2020.

Continuities and discontinuities in pharmaceutical treatment and medication use among older chronically ill patients of Turkish descent in Germany: a qualitative structuring content analysis.

Background: Polypharmacy occurs frequently among older adults and is associated with an increased risk of falls and medication-related adverse events. In particular, people with a history of migration may receive inappropriate medication due to language barriers or discrimination in healthcare. This study aims to assess the continuities, discontinuities and barriers to drug therapy in older migrants of Turkish descent in Berlin, Germany. Methods: Eleven problem-centered qualitative interviews with chronically ill older persons of Turkish descent and family caregivers were conducted and analyzed qualitatively by means of structuring content analysis. Results: The chronically ill participants of Turkish descent predominantly take more than 5 types of medication per day and aim to take them regularly. Discontinuities emerge when medication is forgotten or intentionally omitted due to side effects. Frequent changes in medication and physicians' lack of time are relevant barriers to drug treatment plans. To avoid language barriers and disinterest on the part of professionals, respondents prefer Turkish-speaking physicians.

Prevalence of current suicidal thoughts and lifetime suicide attempts in individuals with cancer and other chronic diseases in Germany: Evidence for differential associations from a representative community cohort.

BACKGROUND: Research indicates an elevated risk for suicidal thoughts and behaviors (STBs) among individuals with cancer, but community-based studies on the prevalence of STBs in comparison to the general population and other chronic diseases are lacking. METHODS: Data was drawn from the representative population-based, prospective Gutenberg Health Study (GHS). Participants (N = 12,382; age: M = 59.5, SD = 10.8; 48.9 % women) completed highly standardized medical assessments and validated questionnaires such as the PHQ-9. In addition to prevalence estimates (stratified by STBs and gender), logistic regression models were calculated (controlling for confounders). RESULTS: The sample included 1910 individuals with cancer, 8.2 % of whom reported current suicidal thoughts and 2.0 % reported lifetime suicide attempts. There was neither a significant association between a cancer diagnosis and suicidal thoughts (p = .077) nor suicide attempts (p = .17) in models adjusting for age, gender, and income. Other chronic diseases were linked to suicidal thoughts and attempts only in men. LIMITATIONS: Although the investigation of the two kinds of STB are a strength of the study, the items' different time frames complicate comparisons. In addition, the cross-sectional design limits the ability to understand observed relationships and to identify periods of risk. CONCLUSION: This study expands the evidence base regarding the vulnerability to STBs in individuals with cancer, including long-term survivors. It highlights their heterogeneity, differential risk factors underlying suicidal thoughts and attempts, and the relevance of other (contextual) factors shaping an individual's susceptibility to suicidal crises.

Multipronged Electronic Health Record Analysis of Antidepressant Effectiveness on Depression Remission in Patients With Concurrent Depression and Irritable Bowel Syndrome.

Background Patients with irritable bowel syndrome (IBS) often experience chronic abdominal pain and bowel habit changes, with a heightened risk of depression and anxiety compared to the general population. Methods Using TriNetX data from 61 U.S. healthcare organizations, we conducted a retrospective study of three electronic health record (EHR) analyses. We used International Classification of Diseases, Tenth Revision (ICD-10) and Anatomical Therapeutic Chemical Classification (ATC) codes to analyze depression remission among IBS patients, comparing those using antidepressants to those who were not and comparing outcomes among different types of medication. Statistical methods included risk difference, risk ratio, hazard ratio, Kaplan-Meier survival analysis, log-rank tests, and Cox hazard ratios Results Among 78,673 patients with both depression and IBS, those using antidepressants showed significantly higher rates of depressive remission compared to non-users: risk difference (RD), -0.056; risk ratio (RR), 0.380; and hazard ratio (HR), 0.413. Both atypical antidepressants bupropion and trazodone exhibited greater efficacy in achieving remission compared to selective serotonin reuptake inhibitors (SSRIs), sertraline and escitalopram. For SSRI vs bupropion, RD is -0.041, RR is 0.664, and HR is 0.655. For SSRIs vs trazodone, RD is -0.018 , RR is 0.822, and HR is 0.806. The comparative impact of bupropion versus trazodone on remission remains inconclusive. Conclusion Depression presents a significant comorbidity in IBS patients, with atypical antidepressants potentially offering superior efficacy in achieving remission compared to SSRIs. Further research should explore these medications' psychiatric outcomes in this population to better understand their therapeutic benefits beyond gastrointestinal (GI) symptoms.

The needs of patients with noncancer diseases and their families from hospital-based specialized palliative care teams in Japan.

BACKGROUND: Hospital-based specialized palliative care teams (HSPC) are important for symptom management and ethics support, especially during complex decision-making, but the needs of patients with noncancer diseases and their families from the HSPC are unclear. This study aimed to (I) compare the prevalence of symptom between patients with and without cancer and explore changes in symptom intensity after HSPC consultation in patients with noncancer; (II) determine factors related to ethics support; and (III) compare the percentage of request contents from patients and their families when a certified nurse specialist in gerontological nursing (geriatric care nurse below) is present in the HSPC to that when a certified nurse specialist in palliative care (palliative care nurse below) is present in the HSPC. METHODS: We utilized a retrospective cohort study to analyze 761 patients (360 with noncancer and 401 with cancer) referred to our HSPC at the National Center for Geriatrics and Gerontology using 10-year data (since 2011) available in an electronic medical record database. (I) Symptom scores of the Support Team Assessment Schedule were compared between noncancer and cancer groups and between initial and 1-week assessments for noncancer patients. (II) Ethics support was compared between noncancer (including dementia) and cancer. The presence or absence of ethics support requests, which was set as the objective variable, was examined using logistic regression analysis. (III) The percentage of request contents selected from nine items defaulted on the electronic medical record when a geriatric care nurse was present in our HSPC were compared to those when a palliative care nurse was present in our HSPC. RESULTS: Compared to those with cancer, patients with noncancer suffered more from dyspnea and sputum accumulation. More than 10% of patients with noncancer had suffered from pain, dyspnea, sputum accumulation, and anorexia that required treatment, with symptom scores showing improvement after 1 week of HSPC involvement, except for the sputum accumulation. Moreover, for anorexia, symptom scores improved, but >10% of these patients continued to suffer. Patients with noncancer diseases, including dementia, received ethics support than those with cancer without dementia. More requests for ethics support were received when a geriatric care nurse was in the HSPC than when a palliative care nurse was in the HSPC. Logistic regression analysis revealed that requests for ethics support were more frequent from patients or families with impaired decision-making capacity or when the patient lacked an advocate. CONCLUSIONS: The needs of patients with noncancer diseases and families from the HSPC in Japan included (I) symptom management for intractable conditions, such as sputum accumulation; (II) ethics support for patients with noncancer diseases, including dementia, with impaired decision-making capacity, and without advocates; and (III) advice on ethics issues from a geriatric care nurse.

'It is up to me because I gave him this life' How the awareness of being permanently and unconditionally responsible shapes the experience of chronic sorrow in parents of disabled children.

OBJECTIVE: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child's disability. There is a significant lack of research on parents' lived experiences of chronic sorrow, which limits our ability to understand parents' needs and provide proper support. DESIGN: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. RESULTS: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate emotions while struggling to maintain their ability to function. CONCLUSIONS: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals' responsiveness to parental needs.

Beyond breast cancer: An exploration of the experiences of middle-aged female breast cancer survivors in Australia.

OBJECTIVES: Middle-aged women (i.e., aged 40-65 years) who live with, through and beyond breast cancer (survivors) are an under-researched population, particularly within an Australian context. The unmet needs reported within this population include fatigue, psychological distress, body image concerns, early-onset menopause, and a lack of information on these issues. This study explores how the experiences of breast cancer survivorship impact the lives of Australian middle-aged women. STUDY DESIGN: Qualitative analysis of written comments in an open text field of a survey completed by 644 women reporting breast cancer in the middle-aged cohort of the Australian Longitudinal Study of Women's Health gathered between 1996 and 2013. Data was collected from any participants who reported breast cancer in any survey. Researchers conducted a thematic analysis using consensus coding on data and identified key themes. MAIN OUTCOME MEASURES: Any data where participants described their experiences of breast cancer survivorship. RESULTS: This cohort reported a unique experience of breast cancer survivorship due to their age group. Analysis developed the following themes: the middle-aged context of breast cancer; care and support, body changes, overcoming fears and maintaining balance; and finding a 'new normal'. CONCLUSIONS: Breast cancer survivorship is a diverse experience. For many it involves chronic limitations and challenges. Investigation and application of survivorship care plans in Australia could benefit breast cancer survivors by including multidisciplinary health professionals in their care. Unmet needs and psychological distress were described by participants rather than biomedical concerns. Further recommendations include development of online support groups providing access to rehabilitation professionals, especially for otherwise isolated rural women.