Consumer involvement; the system says 'No.'.

The importance of authentic consumer engagement to shape decisions in health care is now well recognised. Both the National Health and Medical Research Council and Cancer Council conceptualise consumer involvement as a process that requires consumer capability and organisational capacity and emphasise that organisations should commit to acting on outcomes that have involved consumers. In this perspective piece, we share our experience of working with consumers to develop strategies that aimed to optimise referrals to an evidence-based and cost-effective intervention; a pulmonary rehabilitation program.

Using Inertial Measurement Units and Machine Learning to Classify Body Positions of Adults in a Hospital Bed.

In hospitals, timely interventions can prevent avoidable clinical deterioration. Early recognition of deterioration is vital to stopping further decline. Measuring the way patients position themselves in bed and change their positions may signal when further assessment is necessary.

Benefit-finding in children with advanced cancer and their parents.

Objectives: Although pediatric cancer often causes significant stress for families, most childhood cancer survivors are resilient and do not exhibit severe or lasting psychopathology. Research demonstrates some survivors may report benefit-finding or positive outcomes following this stressful life event. However, considerably less research has included families of children who are unlikely to survive their illness.

Factors associated with caregiver strain among mothers and fathers of children with advanced cancer.

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.

Road to referral success in COPD: Enhancing patient engagement through dedicated conversations about pulmonary rehabilitation programs.

Research Question: From the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)?

Methods: This cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis.

Interventions with a clear focus on achieving behaviour change are important for maintaining training-related gains in people with chronic obstructive pulmonary disease: a systematic review.

Questions: In people with chronic obstructive pulmonary disease (COPD) who complete an exercise training program (ETP) offered at a sufficient dose to result in training-related gains, to what extent are these gains maintained 12 months after program completion? Do variables such as the application of behaviour change techniques moderate the maintenance of these training-related gains?

Design: Systematic review, meta-analysis and meta-regression of randomised controlled trials.

Participants: People with stable COPD.

Intervention: Trials were included if they applied ≥ 4 weeks of a whole-body ETP and reported outcome data immediately following program completion and 12 months after initial program completion.

Exploring Smartphone App Use in Older Adults with a Chronic Respiratory Disease: The biggest Problem I have Is I Don't Understand My Phone At All.

Introduction: In older people with a chronic respiratory disease, we explored (i) usual Smartphone application (App) use, (ii) the time taken to download and use an App, and (iii) changes in self-efficacy for downloading an App after a single practice session.

Methods: Participants were invited to attend one or two separate assessment sessions (Part A and B). Those who attended Part A had data pertaining to their App usage over the previous week extracted from their Smartphone.

COVID-19 impact, resilience, and child quality of life: A dyadic analysis.

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.

Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

Objectives: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease.

Exercise training initiated early during hospitalisation in individuals with chronic obstructive pulmonary disease is safe and improves exercise capacity and physical function at hospital discharge: A systematic review and meta-analysis.

Background And Objective: Earlier reviews of exercise in people during exacerbation of chronic obstructive pulmonary disease (COPD) included studies where exercise training was initiated late during hospital admission or shortly following hospital discharge. Our question was: in adults hospitalised with an exacerbation of COPD, does initiating exercise training early during an admission versus not initiating exercise training during admission, change outcomes measured at discharge?

Methods: Systematic review and meta-analysis. Database searches of PubMed, the Cochrane Library, PEDro and EMBASE conducted in December 2021 and updated in January 2024.

The Role of Illness Perceptions in Dyspnoea-Related Fear in Chronic Obstructive Pulmonary Disease.

Dyspnoea is often the most distressing symptom described by people with a chronic respiratory condition. The traditional biomedical model of neuromechanical uncoupling that explains the physiological basis for dyspnoea is well accepted. However, in people with chronic obstructive pulmonary disease (COPD), measures that are linked with neuromechanical uncoupling are poorly related to the restriction in activity during daily life attributed to dyspnoea.

Quantifying uptake and completion of pulmonary rehabilitation programs in people with chronic obstructive pulmonary disease known to tertiary care.

Background: People with symptomatic chronic obstructive pulmonary disease (COPD) benefit from pulmonary rehabilitation programs (PRPs), but program attrition is common.

Methods: For people with COPD who presented to tertiary care and appeared appropriate for a PRP, we prospectively mapped their PRP journey, explored factors influencing attendance to pre-program assessment and captured program attrition.

Results: Of the 391 participants, 31% (95% CI 27 to 36) were referred to a PRP ( = 123; age 68 ± 10years, 62 males [50%], FEV 45 ± 19%predicted).

Characterising hospitalisation risk for chronic obstructive pulmonary disease exacerbations: Bedside and outpatient clinic assessments of easily measured variables.

Objective: To identify the characteristics of people with chronic obstructive pulmonary disease (COPD) who require hospitalisation for exacerbations.

Methods: People with COPD were recruited either during hospitalisation or from out-patient respiratory medicine clinics. Hospital admissions were tracked throughout the 5-months recruitment period.

Associations between parental depression, communication, and self-worth of siblings bereaved by cancer.

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings.

In adults with advanced lung disease, the 1-minute sit-to-stand test underestimates exertional desaturation compared with the 6-minute walk test: an observational study.

Question: In adults with advanced lung disease, do the 6-minute walk test (6MWT) and 1-minute sit-to-stand test (1minSTS) elicit similar cardiorespiratory responses? Can the 6-minute walk distance (6MWD) be estimated from the 1minSTS result?

Design: Prospective observational study using data collected during routine clinical practice.

Participants: Eighty adults (43 males) with advanced lung disease, a mean age of 64 years (SD 10) and a mean forced expiratory volume in 1 second of 1.65 L (SD 0.

Family functioning buffers the consequences of the COVID-19 pandemic for children's quality of life and loneliness.

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness.

Communication within families about advanced pediatric cancer: A qualitative study.

Objectives: This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Methods: Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5-19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital.

Patient-Centered Care and Healthcare Consumerism in Online Healthcare Service Advertisements: A Positioning Analysis.

Patient-centered care and healthcare consumerism are the two most dominant ideas about the relationship between patients and providers in the United States. To identify providers' positions between the two perspectives, we analyzed the content of direct-to-consumer healthcare service advertisements. The advertisements were collected in the state of Nevada ( = 323) and their landing pages were analyzed for provider attributes, patient experience features, and terms referring to patients and providers.

Factors associated with mental health service use among families bereaved by pediatric cancer.

Objectives: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.

Methods: Bereaved families ( = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer.

Quantifying the Effect of Monitor Wear Time and Monitor Type on the Estimate of Sedentary Time in People with COPD: Systematic Review and Meta-Analysis.

In studies that have reported device-based measures of sedentary time (ST) in people with chronic obstructive pulmonary disease (COPD), we explored if the monitor type and monitor wear time moderated the estimate of this measure. Five electronic databases were searched in January 2021. Studies were included if >70% of participants had stable COPD, and measures of ST (min/day) were collected using wearable technology.

Factors affecting COVID-19 vaccine hesitancy in parents of children with cancer.

Aim: Little research exists on coronavirus (COVID-19) vaccine hesitancy among caregivers of children with cancer. We aimed to (a) describe vaccine hesitancy in parents of children with cancer for both their child and self, and (b) examine the mediating role of parent-reported COVID impact on the association between COVID exposure and vaccine hesitancy.

Procedure: We conducted a national survey of parents of children with cancer via Facebook and Momcology, a pediatric cancer community-based organization recruited February-May 2021.