BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.
METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads\' level of hope and the Edmonton Symptom Assessment System was used to measure patients\' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads\' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.
RESULTS: Dyadic scores of hope and patients\' symptom burden were stable over time. The constructs of hope in dyads included \"Living one day at the time,\" \"Having inner force/strength,\" and \"Maintaining good health.\" Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.
CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients\' and informal caregivers\' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

The relationship between religion and health tends to be framed positively. Religion has been found to act as a coping mechanism and source of support in times of ill health. In this paper, we focus on the disruptive effect of chronic illness on religious practice and cultural engagement. Drawing on interviews with ethnic minority adults with end-stage kidney disease, who also identify as religious, we introduce the concept \'cultural disruption\'. While religious practice and belief was found to provide strength and comfort we also found that chronic illness had a disruptive impact on religious and cultural practice that participants attempted to manage. To highlight the potential disruptive effect of chronic illness on religious faith and cultural engagement we identify three elements of cultural disruption-disruption to religious practice, disruption to sense of self and identity and disruption to wellbeing. We conclude by suggesting that understanding and accounting for the potential of cultural disruption when diagnosing, treating and supporting people with chronic illness offers an alternative entry point to the life-worlds of patients who identify as religious and the things that are important to them.

UNASSIGNED: Children\'s Health Ireland (CHI), who govern and operate acute paediatric services for the greater Dublin area, are also the client for the new children\'s hospital project which will be Ireland\'s first fully digital hospital. Design, development and implementation of digital solutions has been prioritised by the National Strategy for Children\'s Nursing to transform and accelerate nurse-led services.
UNASSIGNED: The aim of this phase of a larger study was to explore the perspectives and opinions of key stakeholders on the requirements, benefits, and challenges for a bespoke patient portal, with a specific focus on the ANP-led Neurosurgical Service and children and young people with hydrocephalus.
UNASSIGNED: Interviews and focus groups were held online, and data were recorded and transcribed verbatim. Twenty-three participants across eight sites were interviewed including parents, healthcare professionals, experts and management/administrators. Data were analysed using Braun and Clarke\'s (2006) framework.
UNASSIGNED: Four key findings and considerations were identified in relation to patient portals in general and their interoperability with Electronic Health Records, as well as a bespoke patient portal for children and young people with hydrocephalus.
UNASSIGNED: The availability of a patient portal for children and young people with hydrocephalus would be hugely advantageous to their parents, the ANP led nursing service, and healthcare professionals in both the neurosurgical service at CHI and at regional healthcare organisations as well as for administration, research, and reports. More timely access to health data as well as a consistent log of information and communications between patients and healthcare professionals, would be more efficient and effective than current practices.The augmented ANP-led Neurosurgical Nursing Service at CHI will act as a pilot project from which other nurse-led digital patient services can learn from.
UNASSIGNED: This study was conducted between September 2022 and June 2023. It was registered in Trinity College Dublin, Ireland.
UNASSIGNED: A study exploring requirements, benefits, & challenges for an interoperable patient portal in an ANP led Service for children with hydrocephalus.

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.

UNASSIGNED: 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.
UNASSIGNED: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children.
UNASSIGNED: 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.
UNASSIGNED: 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.

OBJECTIVE: 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.
METHODS: 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.
METHODS: 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.

Objectives: Digital interventions can offer accessible and scalable treatment for chronic conditions, though often focus separately on physical or mental health. People accessing digital health services may live with multiple conditions or experience overlapping symptoms. This study aimed to describe the breadth and characteristics of chronic health conditions and self-reported disability among routine users of a digital mental health service, and to examine related motivations to engage with digital mental health interventions.
Methods: A cross-sectional survey of adults registered with a digital mental health service in the Australian community (THIS WAY UP) was conducted. Participant demography, chronic health conditions, self-reported disability and motivations for accessing digital treatment were collected and analyzed descriptively.
Results: 366 participants responded (77% female, mean age 50 ± 15 years). 71.6% of participants (242/338) reported ≥1 chronic health condition and one-third reported multimorbidity (112/338, 33.1%). Chronic pain, musculoskeletal and connective tissue disorders were most common. 26.9% of respondents (90/334) reported a disability, most commonly physical disabilities. 95% of those with chronic conditions reported negative mental health effects and 46% reported heightened interest in digital mental health treatments because of their condition. Primary motivations for digital service use were receiving a recommendation from a health professional and service accessibility.
Discussion: People who access digital mental health services in routine care report high rates of heterogenous chronic illness and related disability. There is interest in accessible digital treatments to support mental health at scale among people who live with varied chronic conditions and disabilities.
Heterogenous chronic health conditions and disability are prevalent among people who engage with digital mental health interventions in the community.Approximately three-quarters of people (72%) who access digital mental health interventions have at least one chronic condition, and approx. one quarter (27%) have a disability.The accessibility of digital mental health treatments appealed to people with chronic conditions and/or disabilities.Digital mental health services may have a role to play in supporting mental health and wellbeing at scale among people with varied, disabling chronic conditions.

Comorbidities due to aging and the COVID-19 pandemic together are expected to cause death anxiety among older adults. This study aimed to assess the prevalence of death anxiety and its impact on psychological well-being and successful aging of older adults with chronic illness. A cross-sectional correlational survey was conducted on 79 older adults with chronic illness, drawn with a stratified random sampling method. Self-report measures were used to assess death anxiety, psychological well-being, and successful aging. A high prevalence of death anxiety was reported among older adults. Psychological well-being and successful aging in these older adults were significantly and negatively associated with death anxiety. Further, death anxiety showed substantial predictive valence for psychological well-being and successful aging of older adults with chronic illness. Findings strongly advocate and call for timely intervention programs for chronically ill older adults to reduce their death anxiety for enhanced psychological well-being and promote successful aging.

OBJECTIVE: To describe and compare generic and disease-specific self-care measures in patients with multiple chronic conditions (MCCs) in the three dimensions of self-care maintenance, monitoring, and management.
METHODS: Multicentre cross-sectional study.
METHODS: Patients aged 65 and over with MCCs. We used Self-Care of Chronic Illness Inventory to measure generic self-care, Self-care of Diabetes Inventory to measure self-care in diabetes mellitus, Self-Care of Heart Failure (HF) Index to measure self-care in HF, and Self-Care of Chronic Obstructive Pulmonary Disease Inventory to measure self-care in chronic lung diseases.
RESULTS: We recruited 896 patients. Multimorbid patients with diabetes had lower scores on the self-care maintenance scale, and diabetic patients in insulin treatment on the generic management scale than on the disease-specific instrument. Multimorbid patients with HF or chronic lung diseases scored higher on generic self-care maintenance and monitoring scales than disease-specific ones. There was a partial consistency between the generic and disease-specific self-care maintenance and management. Inadequate behaviours were recorded in disease-specific self-care monitoring rather than generic ones.
CONCLUSIONS: Older patients affected by MCCs scored differently in the generic and disease-specific instruments, showing inadequate self-care in some of the three self-care dimensions.
UNASSIGNED: The choice between generic and disease-specific instruments to use in clinical practice and research should be made considering the specific aims, settings, patients characteristics, and knowledge of the different performance of the instruments by users.
CONCLUSIONS: No study has described and compared generic and specific self-care measures in patients affected by MCCs. Knowing these differences can help nurses choose the most suitable measure for their aims, context, and patients and plan generic and disease-specific self-care educational interventions for those behaviours in which MCCs patients perform poorly.
UNASSIGNED: Patients were informed about the study, provided informed consent, and answered questionnaires through interviews.

BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective.
OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics.
METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis.
RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers\' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability.
CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers\' perspectives on what generates value is essential.