Chronic Illness最新文献

Objectives: This study examined the health discussion networks (HDNs) of people with inflammatory bowel disease (IBD). We sought to test if HDN characteristics were associated with IBD management self-efficacy outcomes.

Methods: We recruited a sample of adults with IBD (N = 112) in December 2020 to take an online survey. Participants listed up to five people (alters) who they discussed their health with, and we used those data to construct individual HDNs. Participants provided demographic information about alters, and characterized alter by relationship, closeness, and support provided. We used multivariable regression to examine associations of HDN characteristics with IBD symptoms, remission, and emotions management self-efficacy outcomes.

Results: Participants reported data for 412 alters (mean HDN size: 3.68). Alters were mostly friends (40%) or family members (36%); few were healthcare workers (6%). In multivariable analyses, HDN size was associated with remission and emotions management self-efficacy (ps < .05), and the amount of support offered by alters was associated with emotions management self-efficacy (p < .05).

Discussion: HDN size and alter support variables were associated with some IBD management self-efficacy outcomes among our study sample. These findings provide empirical evidence about HDNs among people with IBD and support the notion that disease management is a collective effort.

Objective: The course of bipolar disorder (BD) is sensitive to factors that may disrupt biological and social rhythms. It is important for patients diagnosed with BD to continue their follow-up and treatment during the pandemic due to personal and social effects. This study aimed to evaluate the disease course and treatment compliance of individuals diagnosed with BD during the pandemic.

Methods: A total of 267 patients with BD were included in the study. The scales were applied by phone calls. A sociodemographic data form was filled out during the phone interviews. Diagnostic criteria for hypomanic, manic, and depressive episodes in DSM-5 were questioned and recorded through the created form.

Results: During the first of the pandemic, a total of 72 (27.0%) patients had a mood episode, of which 56 (21.0%) were manic/hypomanic episodes and 16 (6.0%) depressive episodes. Also, 54.7% of the patients were able to obtain their medications thanks to the extended medication reports. Being unable to use their medications regularly, having a seasonal pattern of disease, and using an increased number of psychotropics were significant predictors of a new episode. While 74.5% of the patients wanted to talk to their psychiatrists online, only 1.1% could reach the psychiatrist online.

Discussion: The effects of the COVID-19 pandemic are particularly evident in patients with a seasonal pattern. Telepsychiatry practices should be actively included in clinical practice, and government policies developed for treatment compliance seem important.

Objectives: People living with chronic obstructive pulmonary disease (COPD) in regional communities experience a higher disease burden and have poorer access to support services. This study sought to investigate the acceptability of a peer-led self-management program (SMP) in regional Tasmania, Australia.

Methods: This descriptive qualitative study, underpinned by interpretivism used semi-structured one-to-one interviews to gather data to explore COPD patients' views of peer-led SMPs. Purposeful sampling recruited a sample of 8 women and 2 men. Data was analysed using a thematic approach.

Results: The three final themes, 'Normality and Living with the disease', a 'Platform for sharing' and 'Communication mismatch' suggest that peer-led SMPs could offer an opportunity to share experiences. The themes also suggest that COPD often manifested as a deviation from 'normal life'. Communication was often felt to be ambiguous leading to tension between the health experts and people living with the condition.

Discussion: Peer-led SMP has the potential to provide the much-needed support for people living with COPD in regional communities. This will ensure that they are empowered to live with the condition with dignity and respect. Benefits of exchanging ideas and socialisation should not be ignored and may enhance sustainability of SMPs.

Objectives: To find the prevalence of knowledge of arteriovenous fistula (AVF) self-care, its characteristics, and associated factors among hemodialysis patients and summarize the findings of various domains of AVF self-care in south Asian countries.

Methods: The systematic literature search was performed on online databases and additional sources to retrieve published articles on AVF self-care. We estimated the pooled prevalence using a random effects model in meta-analysis. Additionally, thematic knowledge regarding various aspects of AVF self-care was narratively summarized.

Results: Among the articles retrieved seven studies met our inclusion and exclusion criteria. The prevalence of AVF self-care in individual studies ranged from 59% to 99%, with an overall random pooled prevalence of 81% (95% CI, 68% to 94%). Major factors associated with self-care of AVF knowledge included patients' educational status, age, vintage of hemodialysis, and healthcare personnel's advice.

Discussion: Knowledge scarcity regarding potential measures of AVF self-care obligates the need for continuous education in hemodialysis patients. A multidisciplinary approach is vital to enhance self-care from pre- to post-creation of AVF in hemodialysis patients as well as their caregivers in order to prolong the patency rates and decrease the subsequent morbidity and mortality due to failure of AVF.

Objective: African Americans are more likely to develop end-stage kidney disease (ESKD) than whites and face multiple inequities regarding ESKD treatment, renal replacement therapy (RRT), and overall care. This study focused on determining gaps in participants' knowledge of their chronic kidney disease and barriers to RRT selection in an effort to identify how we can improve health care interventions and health outcomes among this population.

Methods: African American participants undergoing hemodialysis were recruited from an ongoing research study of hospitalized patients at an urban Midwest academic medical center. Thirty-three patients were interviewed, and the transcribed interviews were entered into a software program. The qualitative data were coded using template analysis to analyze text and determine key themes. Medical records were used to obtain demographic and additional medical information.

Results: Three major themes emerged from the analysis: patients have limited information on ESKD causes and treatments, patients did not feel they played an active role in selecting their initial dialysis unit, and interpersonal interactions with the dialysis staff play a large role in overall unit satisfaction.

Discussion: Although more research is needed, this study provides information and suggestions to improve future interventions and care quality, specifically for this population.

Objectives: To examine patient attitudes, experiences, and satisfaction with healthcare associated with office visit utilization among Medicare beneficiaries with type 2 diabetes.

Methods: We analyzed the 2019 Medicare Current Beneficiary Survey Public Use File of beneficiaries aged ≥65 years with type 2 diabetes (n = 1092). The ordinal dependent variable was defined as 0, 1 to 5, and ≥6 office visits. An ordinal partial proportional odds model was conducted to examine associations of beneficiaries' attitudes, experiences, and satisfaction with healthcare and office visit utilization.

Results: Among the beneficiaries, approximately 17.7%, 22.8%, and 59.5% reported having 0, 1 to 5, and ≥6 office visits, respectively. Being male (OR = 0.67, p = 0.004), Hispanic (OR = 0.53, p = 0.006), divorced/separated (OR = 0.62, p = 0.038) and living in a non-metro area (OR = 0.53, p < 0.001) were associated with a lower likelihood of attending more office visits. Trying to keep sickness to themselves (OR = 0.66, p = 0.002) and dissatisfaction with the ease and convenience of getting to providers from home (OR = 0.45, p = 0.010) were associated with a lower likelihood of having more office visits.

Discussion: The proportion of beneficiaries foregoing office visits is concerning. Attitudes concerning healthcare and transportation challenges can be barriers to office visits. Efforts to ensure timely and appropriate access to care should be prioritized for Medicare beneficiaries with diabetes.

Objective: Type 1 diabetes is one of the most common chronic conditions in young children and adolescents. During the period of adolescence, young people with diabetes often struggle with self-management and have compromised health-related quality of life. This often leads to familial conflicts affecting all family members negatively. The aim of this study is to provide qualitative insight into the everyday life of families with adolescents with type 1 diabetes.

Methods: The data consisted of participatory family workshops conducted using interactive dialogue tools. The total number of participants was 33 (adolescents n = 13, parents n = 20). The adolescents were between 15 and 17 years. The data were analyzed using systematic text condensation.

Results: The results showed two main themes. The first theme, Diabetes-friendly and unfriendly social contexts, highlighted how the (dis)comfortability of disclosing diabetes was a significant factor in achieving optimal metabolic control. For parents, it affected their perception of social support. The second theme, incongruent illness representations among family members, dealt with the extended family conflict during the period of adolescence.

Discussion: Insights from our study could help healthcare professionals apply a family-centered approach minimizing family conflict and supporting metabolic control when consulting families with adolescents with type 1 diabetes.

Objective: To explore the care experiences of spouses as long-term and primary caregivers for disabled older adults in China.

Methods: A descriptive phenomenological method was used in this study, as well as purposive and convenient sampling. Semi-structured interviews were conducted with 15 spousal caregivers in Guangdong, China, from March to December 2021. Interview audio-recordings were transcribed verbatim and data were analyzed using Colaizzi's phenomenological analysis method.

Results: We identified four themes from the data: spousal care motivation; sacrifices in caregiving; obstacles in caregiving; spousal caregivers' positive experiences.

Conclusions: Spouses took responsibility for providing care for their disabled partners regardless of their willingness. They had positive experiences while providing care, but negative experiences were dominant, especially for spouses of severely disabled older adults. Spouses are always perfect in caregiving roles, although they may also need medical assistance. To prevent a decline in spousal caregivers' quality of life and relieve their care burdens, health care providers should support them as soon as possible or offer formal care for disabled older adults. It is necessary to intervene considering disabled older adults and their spousal caregivers as a unit to empower their confidence in coping with life together.

Background: Having meaning in life is a protective factor for psychological well-being. Accurate assessment of this construct needs a valid and reliable tool.

Purpose: This study aims to evaluate the psychometric properties of the Farsi version of the meaning of life questionnaire in patients with cancer.

Method: In this cross-sectional study, after translating the questionnaire to Farsi, in a sample of 212 patients with cancer, feasibility, content and convergent validity, exploratory and confirmatory factor analysis, internal consistency, stability, and responsiveness were evaluated.

Results: The results show that the content validity ratio of all ten items was greater than 0.49. Also, the modified Kappa coefficient of each item was greater than 0.6. The maximum likelihood exploratory factor analysis extracted one factor, which explains 76.13% of the total variance of the sample. Item nine was removed. The confirmatory factor analysis results show that the one-factor model had good fit indices. The Cronbach's alpha, McDonald's omega, composite reliability, MaxR, and intraclass correlation coefficient were 0.96, 0.96, 0.96, 0.96, and 0.98, respectively. The questionnaires had responsiveness and its response time was 3 s.

Conclusion and policy summary: The nine-item Farsi version of the meaning of life questionnaire has good validity and reliability and responsiveness.