Self-perceived burden to others

BACKGROUND: Congenital talipes equinovarus (CTEV) is a congenital musculoskeletal deformity, which further leads to abnormal alignment of the feet in children. The aim of the present study is to assess perception and practice and explore lived experiences on the use of corrective braces among parents of children diagnosed with clubfoot. MATERIAL AND METHODOLOGY: A mixed method study approach with convergent parallel research design was used on 100 parents of children with clubfoot...

PURPOSE: To describe the processes of developing domains and items for the MultiMorbidity Questionnaire (MMQ), a multimorbidity-specific PROM for the assessment of Needs-based QoL. PATIENTS AND METHODS: We developed items and domains for the MMQ through 17 qualitative content validity questionnaire interviews with adults with multimorbidity by testing items from an item bank (covering items with content inspired by existing Needs-based QoL measures for single diseases)...

OBJECTIVES: Studies of retrospective personality change with dementia consistently find caregivers report large changes in personality (e.g., increases in neuroticism) of their care recipients compared to before dementia. This work seeks to replicate the established pattern of personality change, extend it to change in psychological distress, well-being, and social connection, and evaluate whether changes vary by stage of dementia. METHODS: Caregivers of people with dementia (N = 188) reported on the psychological and social health of their care recipient currently and how they were before they developed dementia...

BACKGROUND: Stress-related mental health disorders have steadily increased and contributed to a worldwide disease burden with up to 50% experiencing a stress-related mental health disorder worldwide. Data suggest that only approximately 20%-65% of individuals receive treatment. This gap in receiving treatment may be attributed to barriers such as limited treatment access, negative stigma surrounding mental health treatment, approachability (ie, not having a usual treatment plan or provider), affordability (ie, lack of insurance coverage and high treatment cost), and availability (ie, long waits for appointments) leaving those who need treatment without necessary care...

BACKGROUND: Informal carers of people with BPD experience high levels of burden and psychological distress relative to other populations. There is a scarcity of research evidencing the influence of modifiable factors on carer outcomes to inform interventions. This study aimed to investigate the relationship between social support, coping strategies and psychological distress and positive mental well-being in this carer population. METHODS: In this cross-sectional study, 1207 carers completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale...

OBJECTIVE: To assess the frequency of suicidal ideation (SI) among individuals with chronic spinal cord injury (SCI) and to identify risk factors associated with SI. DESIGN: Cross-sectional. SETTING: Community setting. PARTICIPANTS: Two hundred and forty-six individuals with chronic SCI participating in the Spinal Cord Injury Model Systems at a Level 1 Trauma center. INTERVENTIONS: Not applicable...

BACKGROUND: Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interventions, an adequate patient-reported outcome measure (PROM) is essential. The aim of this study was to assess the draft MultiMorbidity Questionnaire (MMQ), a PROM measuring needs-based quality of life and self-perceived inequity in patients with multimorbidity, for its psychometric properties and to adjust it accordingly to create a content- and construct valid measure...

Type 2 diabetes (T2D) has been rising in prevalence over the past few decades in the US and worldwide. T2D contributes to significant morbidity and premature mortality, primarily due to cardiovascular disease (CVD). Exercise is a major cornerstone of therapy for T2D as a result of its positive effects on glycemic control, blood pressure, weight loss and cardiovascular risk as well as other measures of health. However, studies show that a majority of people with T2D do not exercise regularly. The reasons given as to why exercise goals are not met are varied and include physiological, psychological, social, cultural and environmental barriers to exercise...

INTRODUCTION: Caregivers of patients with primary malignant brain tumours experience substantial psychological distress while caring for someone with a progressive, life-limiting neurological illness. However, there are few interventions aimed at addressing the psychosocial needs of this population. We developed and are testing a population-specific, evidence-based, telehealth intervention (NeuroCARE) to reduce anxiety symptoms and improve psychosocial functioning in this caregiver population...

PURPOSE: Hematopoietic stem cell transplantations (HSCT) are extremely stressful procedures for pediatric patients. The activation of the hypothalamic pituitary adrenocortical axis (HPA) can influence the immune system negatively and therefore the overall outcome. The distress thermometer (DT) is an easy to use tool for the self-assessment of perceived distress. METHODS: In this prospective study, a DT with an attached problem list was used in 40 pediatric patients undergoing HSCT and in one parent of each patient...

BACKGROUND: Family carers of youth recovering from early psychosis experience significant stress; however, access to effective family interventions is poor. Digital interventions provide a promising solution. OBJECTIVE: Our objective was to evaluate across multiple Australian early psychosis services the effectiveness of a novel, web-based early psychosis intervention for carers. METHODS: In this cluster randomized controlled trial conducted across multiple Australian early psychosis services, our digital moderated online social therapy for carers (Altitudes) plus enhanced family treatment as usual (TAU) was compared with TAU alone on the primary outcome of perceived stress and secondary outcomes including mental health symptoms and family variables at the 6-month follow-up...

INTRODUCTION: The implementation of a telerehabilitation protocol for self-care in the routine of caregivers of individuals with amyotrophic lateral sclerosis (ALS) has been associated with reduced levels of stress and improved quality of life. Moreover, it may reduce the difficulty of traveling to perform physical or other self-care activities. Thus, this study designed a clinical trial protocol to investigate the effects of a self-care education program via telerehabilitation on the burden and quality of life of caregivers of individuals with ALS...

Objectives: Studies of retrospective personality change with dementia consistently find caregivers report large changes in personality (e.g., increases in neuroticism) of their care recipients compared to before dementia. This work seeks to replicate the established pattern of personality change, extend it to change in psychological distress, well-being, and social connection, and evaluate whether changes vary by stage of dementia. Methods: Caregivers of people with dementia ( N =194) reported on the psychological and social health of their care recipient currently and how they were before they developed dementia...

Perceiving oneself as a burden to others (other-burdensomeness), as well as perceiving one's selfhood as a burden (self-burdensomeness), have been proposed as risk factors for suicidal ideation. Yet, it is unclear whether the altruistic motive of being a burden to others or the self-oriented motive of being a burden on oneself is more relevant to suicidal ideation. Given this background, two rival mediation models were tested. Data from N = 228 outpatients (64% female; age: M(SD) = 38.69 (12...

BACKGROUND: The aim of the observational, prospective study was to validate a novel, nonverbal assessment tool for perceived disease burden-Pictorial Representation of Illness and Self-Measure (PRISM)-in ulcerative colitis (UC) against established patient health questionnaires. The cumulative burden of patients recently diagnosed (<3 years) with UC was also evaluated. METHODS: "ICONIC" - Understanding the impact of ulcerative colitis and its associated disease burden on patients - was a noninterventional, multicountry, multicenter study performed in a 2-year follow-up format in adult patients with recently diagnosed UC in 33 countries, regardless of disease severity or treatment...

OBJECTIVE: Subjective cognitive decline, self-perceived cognitive deterioration without objective impairment, is becoming a vital health indicator, especially due to its intermediate stage between normal function and mild cognitive impairment. Cognitive decline often coexists with various symptoms that may interact with each other, serve as prognostic indicators and influence the progression of cognitive decline. This study aims to identify symptom clusters among individuals with subjective cognitive decline, using latent class analysis, and to identify factors affecting these symptom clusters, offering insights into understanding and potentially preventing cognitive decline progression...

BACKGROUND: Currently approved therapies for individuals with alpha-1 antitrypsin deficiency (AATD) are intravenously infused products. The burdens and demographics of infusion practices in the United States are not well characterized. RESEARCH QUESTION: What is the prevalence of different infusion practices in the United States? STUDY DESIGN AND METHODS: AlphaNet disease management participants completed a survey that captured current and past infusion practices...

PURPOSE: To describe the injury prevalence, injury pattern, and potential baseline risk factors for injuries in male and female adolescent and adult amateur football players. METHODS: This prospective study followed adolescent and adult amateur football players over one season March-October 2020. The study was completed by 462 players (130 men, age 20.0 ± 5.7, 14-46 years) who answered a baseline survey and a weekly web survey during the season...

AIM: To delineate and clarify the meaning of the concept of self-care monitoring from a patient perspective. METHODS: A systematic search was performed in the databases ASSIA, CINAHL, PsycInfo, and PubMed (January 2016-September 2021). A selection of 46 peer-reviewed articles was included in the study and analysed using Rodgers' Evolutionary Method for Concept Analysis. RESULTS: The following four attributes were identified: Tracking symptoms, signs, and actions, Paying attention, Being confident, and Needing routines, creating a descriptive definition: "Self-care monitoring is an activity that means a person has to pay attention and be confident and needs routines for tracking symptoms, signs, and action...

INTRODUCTION: Limited evidence exists for how patient preference elicitation methods compare directly. This study compares a discrete choice experiment (DCE) and swing-weighting (SW) by eliciting preferences for glucose-monitoring devices in a population of diabetes patients. METHODS: A sample of Dutch adults with type 1 or 2 diabetes (n = 459) completed an online survey assessing their preferences for glucose-monitoring devices, consisting of both a DCE and a SW exercise...