Fatigue in Prostate Cancer: A Roundtable Discussion and Thematic Literature Review.

Context: Cancer and its treatments cause fatigue in up to 90% of men with advanced prostate cancer. As men with prostate cancer are surviving longer, cancer-related fatigue is becoming increasingly important for clinicians to understand and proactively manage. Objective: The aim of this work is to identify knowledge gaps that may support healthcare professionals to recommend personalised fatigue management strategies. Evidence acquisition: This manuscript is based on a roundtable discussion held during the European Association of Urology 2022 Annual Symposium, combined with a review of the literature. Five core themes were generated from the roundtable: (1) meaning of fatigue in prostate cancer patients, (2) impact of fatigue, (3) association between fatigue and treatment selection, (4) benefits of managing fatigue, and (5) barriers to exercise. Evidence synthesis: Cancer-related fatigue has complex underlying aetiology and is a subjective experience that may be under-reported. Some studies have shown that techniques such as education, cognitive behavioural therapy, guided imagery, and progressive muscle relaxation can result in clinically meaningful improvements in fatigue. However, the largest body of evidence, and a theme echoed in the roundtable discussions, was the benefit of exercise on fatigue. Despite the benefits of exercise, for some men, objective barriers to exercise exist and knowledge of benefits does not automatically translate into implementation and adherence. Conclusions: Understanding the specific health needs of individual patients and their desired health outcomes is essential to identify personalised strategies for minimising fatigue. As an outcome of the roundtable meeting, we developed a quick reference guide for healthcare providers. A high-resolution copy can be downloaded from https://patients.uroweb.org/library/fatigue-in-prostate-cancer-patients-guide/. Patient summary: This article is based on dialogue between a group of specialists, patients, and caregivers, which took place at a roundtable meeting during the European Association of Urology 2022 Annual Symposium. The group discussed how healthcare providers can best support their patients who experience fatigue. The group subsequently developed a guide to help healthcare providers during appointments.

Responsive Feeding Practices to Promote Healthy Diets: A Mixed Method Study among Low-Income Caregivers with Toddlers.

Responsive feeding (RF), the reciprocal feeding approach between caregiver and child that promotes child health, is understudied among low-income caregivers. This mixed methods study with low-income caregivers of 12-to-36-month-olds aimed to (1) assess variability in RF and associations with children's dietary intake, and (2) explore caregivers' perceptions of RF. Caregivers (n = 134) completed an online survey with RF questions (n = 25), grouped into environmental (meal environment, caregiver modeling, caregiver beliefs) and child (self-regulation, hunger/satiety cues, food for reward, food acceptance) influences scores. Children's recent food group consumption was loaded onto healthy and less healthy intake scores. In an adjusted multiple linear regression analysis, greater RF scores for environmental and child influences were associated with greater healthy intake scores (p's < 0.01). Greater scores for environmental influences were also associated with lower scores for unhealthy intake (p < 0.01). From focus groups with a separate sample of caregivers (n = 24), thematic analysis uncovered that two themes aligned (trust in child cues, positive strategies to encourage children to eat non-preferred foods) and two misaligned (lack of trust in child cues, use of force/bribery) with RF. Complementary integration of quantitative and qualitative findings can inform future interventions with low-income caregivers, encouraging trust in young children's hunger/satiety cues and positive strategies for food acceptance to improve diet quality.

Dyadic Yoga for Head and Neck Cancer Patients Undergoing Chemoradiation and their Family Caregivers.

OBJECTIVES: Concurrent chemoradiation to treat head and neck cancer (HNC) may result in debilitating toxicities. Targeted exercise such as yoga therapy may buffer against treatment-related sequelae; thus, this pilot RCT examined the feasibility and preliminary efficacy of a yoga intervention. Because family caregivers report low caregiving efficacy and elevated levels of distress, we included them in this trial as active study participants. METHODS: HNC patients and their caregivers were randomized to a 15-session dyadic yoga program or a waitlist control (WLC) group. Prior to randomization, patients completed standard symptom (MDASI-HN) and patients and caregivers completed quality of life (SF-36) assessments. The 15-session program was delivered parallel to patients' treatment schedules. Participants were re-assessed at patients' last day of chemoradiation and again 30 days later. Patients' emergency department visits, unplanned hospital admissions and gastric feeding tube placements were recorded over the treatment course and up to 30 days later. RESULTS: With a consent rate of 76%, 37 dyads were randomized. Participants in the yoga group completed a mean of 12.5 sessions and rated the program as "beneficial." Patients in the yoga group had clinically significantly less symptom interference and HNC symptom severity and better QOL than those in the WLC group. They were also less likely to have a hospital admission (OR = 3.00), emergency department visit (OR = 2.14), and/or a feeding tube placement (OR = 1.78). CONCLUSION: Yoga therapy appears to be a feasible, acceptable, and possibly efficacious behavioral supportive care strategy for HNC patients undergoing chemoradiation. A larger efficacy trial is warranted.

Resilience and adolescence-transition in youth with developmental disabilities and their families: a scoping review.

Background: Children with neurodevelopmental disabilities (NDDs, e.g., cerebral palsy) and their caregivers face lifelong and impactful challenges, particularly during life-transition periods such as adolescence. One's resilience emerges as an essential ability to navigate this vulnerable phase. Resilience is a complex concept that embeds multiple factors on various levels. Little is known about what resilience factors are pivotal in youth with NDDs and their families as they transition into adolescence and how these are addressed as part of existing targeted interventions. Objectives: This review explored the concept of resilience in youth with NDDs and their families. Specific aims included describing salient resilience factors in adolescents with NDDs and their families and to describe how resilience is addressed as part of targeted interventions. Methods: Using the Arskey and O'Malley framework, six steps were undertaken, including a comprehensive literature search (n = 5 databases), transparent study selection, detailed data extraction with a coding scheme (n = 46 factors), results' collating with numerical and inductive content analysis, and consultation with three key stakeholders. Results: The study screened 1,191 publications, selecting fifty-eight (n = 58; n = 52 observational and n = 6 intervention) studies. Findings revealed that resilience in this context is closely linked to more than forty factors across four levels (individual; family; school/peers; and community). Pivotal factors include social and emotional competence, optimism, and family/peer relationships. While existing interventions targeting resilience show promising results, few programs are available and generalizable to different NDDs. Stakeholders highlighted the importance of addressing resilience factors that are not targeted in existing interventions: caregivers' self-efficacy and self-esteem, as well as youth's and caregiver's confidence. Preferences for and advantages of online delivery for support programs and individual/group features also emerged. Conclusion: The review emphasizes the need for a holistic approach to support youth with NDDs and their families during adolescence transition. To enhance their resilience, recognizing caregivers' roles, customizing interventions, and exploring new implementation formats are avenues that align with the current evidence and opportunities for practical development in this field.

Study protocol: randomized controlled trial of an individualized music intervention for people with dementia in the home care setting.

BACKGROUND: Studies suggest that individualized music listening is an effective, non-pharmacological intervention for improving the quality of life of people with dementia in the institutional care setting. Noting that most people with dementia live at home, we conduct a randomized controlled trial to assess the feasibility and effectiveness of an app-based individualized music listening intervention for people with dementia in the home care setting. The intervention is delivered by family caregivers. METHODS: We will recruit N = 130 dyads consisting of one person with dementia living at home and their family caregiver. After a baseline assessment, dyads are randomly assigned by gender to either the intervention or control group. People with dementia in the intervention group listen to individualized music playlists for 20 min every other day for six weeks via the self-developed Individualized Music and Dementia app. The control group receives standard care. All dyads complete paper-and-pencil questionnaires six weeks before the start of the intervention (T0), directly before the intervention (T1), directly after the intervention (T2), and six weeks later (T3). During the intervention period, all caregivers also complete daily ecological momentary assessments via the app. During three home visits, a trained project member will observe the dyads and collect hair samples. After the intervention, semi-structured interviews will be conducted to collect information about participants' experiences with the app and intervention. The primary outcome is the attainment of individual goals established during the baseline assessment. Secondary outcomes are the well-being, physiological stress and quality of life of people with dementia and their caregivers; people with dementia's behavioural and psychological symptoms of dementia, resistance during care, and reactions to the music; caregivers' burden of care, positive aspects of care, and caregiving self-efficacy; and the quality of the caregiver-care recipient interaction. DISCUSSION: Our study will assess the extent to which an app-based individualized music listening intervention is feasible and effective for enhancing the well-being and quality of life of people with dementia living at home and their family caregivers. TRIAL REGISTRATION: German Clinical Trials Register DRKS00025502 and ISRCTN registry ISRCTN68084105, https://doi.org/10.1186/ISRCTN68084105.

Effect of mHealth-based relaxation program on stress coping and anxiety levels in mothers of children with cancer: A randomized controlled study.

OBJECTIVE: This study aimed to explore the effects of a mHealth-based relaxation program on anxiety and stress coping levels in mothers of children with cancer. METHODS: This randomized controlled, single-blind, parallel-group trial was conducted in the pediatric hematology-oncology unit of a university hospital. The study was completed by 50 mothers (intervention group: n = 25; control group: n = 25). The mothers in the intervention group participated in a mHealth-based relaxation program for eight weeks (including progressive muscle relaxation, guided imagery, and the four-leaf clover of mindfulness). Videos of the relaxation program were sent to mothers' WhatsApp accounts. The mothers in the control group received routine care. The State-Trait Anxiety and Stress Coping Scales were administered during the first and eighth weeks. The registration number of this study on ClinicalTrials.gov is NCT05807295. RESULTS: Mothers who participated in the relaxation program had lower anxiety levels and higher stress-coping scores than those in the control group (p < 0.05). CONCLUSION: Progressive muscle relaxation exercises, guided imagery, and cognitive-based therapeutic approaches were effective in reducing mothers' anxiety and stress coping. PRACTICE IMPLICATIONS: Pediatric oncology nurses can apply mHealth-based relaxation programs to support caregivers, particularly mothers. In this way, ensuring the continuity and integrity of care is easy.

Forgone healthcare for medically vulnerable groups during the pandemic era: experiences of family caregivers of young adults with substance use disorders in Zambia.

Introduction: Scholars worldwide have defined the COVID-19 pandemic as a mass-disabling event of our time. The situation is grave for families experiencing financial hurdles while caring for young adults in recovery from addiction problems. Methods: Using semi-structured interviews with 30 purposively selected family caregivers (FCGs) of young adults with substance use disorders (SUDs) in Lusaka, Zambia, this study reveals several factors influencing forgone healthcare for this medically vulnerable group. Results: Financial challenges and huge out-of-pocket bills; caregivers' perceived far-fetched recovery of the young adult; the cost of medication and transportation; the young adult's little perceived need for healthcare service use, their runaway and treatment elusive tendencies; caregiver concerns about contracting the virus, and the stigma associated with it; and a fragmented child and adolescent mental health system influenced forgone healthcare. The young adults were often unavailable for days and months, posing challenges to the continuity of care. Despite caregivers' acknowledgment of the availability of healthcare professionals, young adults with problematic substance use had limited access to SUD recovery services, resulting in adverse health outcomes. Results also show that most family caregivers encountered challenges in accessing and purchasing psychotropic medications, which were difficult to find during the lockdowns. Some family caregivers lost their sources of income by being laid off from work due to the pandemic and skipping work to attend to caregiving responsibilities. Most of those in self-employment had to close their business and stay home to look after their youth. Several caregivers kept their youth at home because they failed to access private residential SUD recovery services. Family caregivers mostly relied on outpatient public health services, alternative medicine from traditional healers, and faith-based healing, all of which some young adults rarely accessed because of their problematic behaviors of escaping healthcare. Conclusion: These identifiable risk factors, and their detrimental consequences highlight the need for interventions to improve healthcare access for this vulnerable population. Supporting FCGs of addicted young adults is crucial in ensuring the well-being of both the caregivers and care recipients. Further research is warranted to explore potential solutions, such as peer support programs, policy changes, and education initiatives for carers and recipients in the (post) pandemic era.

Songwriting Group Music Therapy to promote psychological adjustment in informal caregivers of elderly people with dependency: a mixed methods study.

Introduction: Informal caregivers of elderly people with dependency (EPD) provide intensive care that can affect their quality of life (QoL). Psychosocial interventions such as music therapy are important to work on their self-care. The aim of this study is to analyze, with a mixed method approach, the experience of participating in a Songwriting Group Music Therapy (SGMT) intervention on informal caregivers of EPD. Methods: A total of 11 groups, with a convenience sample of 61 caregivers, received 10 SGMT sessions. Quantitative information related to QoL variables (anxiety, depression, spirituality, burden, and coping) was collected before and after the intervention and at 3 months of follow-up. Regarding qualitative data, an open-ended question about the experience of participating was asked. Results: Significant changes were shown, sustained over time, in trait anxiety and depression and subscales including inner peace, social functioning, and mental health. Three themes were generated from the thematic analysis, including that SGMT participation can enhance personal growth, bring out and enable work on emotions, and promote helpful interpersonal dynamics. Discussion: The findings indicate that SGMT is a useful intervention for informal caregivers of EPD, promoting psychological adjustment, enhanced coping, emotional regulation, and social support. This study reinforces the findings with caregivers of other populations, providing new results and highlighting the benefits of SGMT for caregivers of EPD.

Care Partner Engagement in Secure Messaging Between Patients With Diabetes and Their Clinicians: Cohort Study.

BACKGROUND: Patient engagement with secure messaging (SM) via digital patient portals has been associated with improved diabetes outcomes, including increased patient satisfaction and better glycemic control. Yet, disparities in SM uptake exist among older patients and racial and ethnic underserved groups. Care partners (family members or friends) may provide a means for mitigating these disparities; however, it remains unclear whether and to what extent care partners might enhance SM use. OBJECTIVE: We aim to examine whether SM use differs among older patients with diabetes based on the involvement of care partner proxies. METHODS: This is a substudy of the ECLIPPSE (Employing Computational Linguistics to Improve Patient-Provider Secure Emails) project, a cohort study taking place in a large, fully integrated health care delivery system with an established digital patient portal serving over 4 million patients. Participants included patients with type 2 diabetes aged ≥50 years, newly registered on the patient portal, who sent ≥1 English-language message to their clinician between July 1, 2006, and December 31, 2015. Proxy SM was identified by having a registered proxy. To identify nonregistered proxies, a computational linguistics algorithm was applied to detect words and phrases more likely to appear in proxy messages compared to patient-authored messages. The primary outcome was the annual volume of secure messages (sent or received); secondary outcomes were the length of time to the first SM sent by patient or proxy and the number of annual SM exchanges (unique message topics generating ≥1 reply). RESULTS: The mean age of the cohort (N=7659) at this study's start was 61 (SD 7.16) years; 75% (n=5573) were married, 15% (n=1089) identified as Black, 10% (n=747) Chinese, 12% (n=905) Filipino, 13% (n=999) Latino, and 30% (n=2225) White. Further, 49% (n=3782) of patients used a proxy to some extent. Compared to nonproxy users, proxy users were older (P<.001), had lower educational attainment (P<.001), and had more comorbidities (P<.001). Adjusting for patient sociodemographic and clinical characteristics, proxy users had greater annual SM volume (20.7, 95% CI 20.2-21.2 vs 10.9, 95% CI 10.7-11.2; P<.001), shorter time to SM initiation (hazard ratio vs nonusers: 1.30, 95% CI 1.24-1.37; P<.001), and more annual SM exchanges (6.0, 95% CI 5.8-6.1 vs 2.9, 95% CI 2.9-3.0, P<.001). Differences in SM engagement by proxy status were similar across patient levels of education, and racial and ethnic groups. CONCLUSIONS: Among a cohort of older patients with diabetes, proxy SM involvement was independently associated with earlier initiation and increased intensity of messaging, although it did not appear to mitigate existing disparities in SM. These findings suggest care partners can enhance patient-clinician telecommunication in diabetes care. Future studies should examine the effect of care partners' SM involvement on diabetes-related quality of care and clinical outcomes.

A Comparative Analysis of Spiritual Care Needs Among Cancer Patients Receiving Home Care and Their Caregivers in Turkey.

This study was conducted to determine and compare the spiritual care needs of cancer patients and their caregivers. A comparative descriptive, cross-sectional design was employed in this study. The study comprised 102 patients who were registered in the hospital's home care unit, as well as their caregivers (total number = 204). The data were collected using a personal information form and the Spiritual Care Needs Inventory. The cancer patients had a mean age of 69.5 years, while their caregivers' mean age was 53.1 years. According to the results, the cancer patients needed more spiritual care than their caregivers (p < 0.01). Patients' spiritual care needs differed significantly by employment status (p < 0.05). However, gender, educational level, and marital status did not have a significant difference in the spiritual care needs of the patients and their caregivers (p > 0.05). Moderately positive and significant (p < 0.05) correlations between patients and their caregivers were found for the total Spiritual Care Needs Inventory scores (r = 0.449), the meaning and hope subscale (r = 0.378), and the caring and respect subscale (r = 0.546). It is important to evaluate the spiritual needs of patients with cancer and their caregivers. In this evaluation, it is essential to elicit the perspectives of cancer patients and their caregivers concerning spiritual needs and religion. Effective spiritual care for patients and their caregivers can only be provided if their beliefs and priorities are taken into consideration.

The Effect of a Mindful Self-Compassion Intervention on Burden, Express Emotion and Mental Well-Being in Family Caregivers of Patients with Schizophrenia: A Randomized Controlled Trial.

The objective of this randomized controlled trial was to examine the impact of a mindful self-compassion intervention on burden, express emotion, and mental well-being in family caregivers of patients with schizophrenia. Standardized measures, including the ZARIT Caregiving Burden Scale, Expressed Emotion Scale and Warwick-Edinburgh Mental Well-Being Scale, were administered at baseline, post-intervention. Statistical analysis was conducted to assess differences between the two groups. Significant reductions in caregiver burden, expressed emotion, and enhanced mental well-being in the intervention group compared to the control group at post-intervention. The results of this randomized controlled trial indicate that the mindful self-compassion intervention significantly reduces caregiver burden, expressed emotion, and improves mental well-being in family caregivers of patients with schizophrenia. These findings underscore the potential utility of mindful self-compassion interventions as effective support for this population, highlighting the importance of integrating such interventions into caregiver support programs.

Effects of Mindfulness Based Interventions in Adults and Older Adults Caregivers of Patients with Early Stage Alzheimer's Disease: A Randomized Pilot Study.

Background: Many studies have highlighted the effect of training with mindfulness-based interventions (MBIs) on the psycho-physical rebalancing of patients suffering from various pathologies, and their families. Objective: In this study, the effect of a training with mindfulness-based stress reduction (MBSR) on quality of life and emotion regulation (depression) was verified in caregivers (CGs) of patients affected by Alzheimer's disease at early stage (AD-P). Methods: In this randomized controlled study, 22 CGs (age≥60 years) were treated with MBIs, in particular MBSR, and 22 CGs had no treatment. Tests (T0-T1 six months) included: SF 36-Quality of Life (QoL); Caregiver Burden Inventory (CBI); FACIT-Spiritual-Well-Being; Beck Depression Inventory (BDI); Everyday Cognition scales; and Mini-Mental State Examination (for AD-P). Results: Significant differences emerged between T0 and T1 for CGs with MBSR in the following dimensions: Depression-BDI (p > 0.001), Burden CBI-Total (0.001), CBI-Time dependent burden (p < 0.001), CBI-Developmental burden (p < 0.001), CBI-Physical burden (p < 0.001); and pain (p = 0.002) all decreased; while CBI-Social burden (p = 0.004), QoL-Health Role Limitation (p < 0.000), QoL-Role-Limitation-Emotional-Problem (p < 0.000), QoL-Energy-fatigue (p < 0.000), QoL-Emotional Well-Being (p < 0.001), QoL-Social Well Being (p = 0.010), and QoL-General Health (p = 0.004) increased. The control group of untreated CG showed a significant worsening in the dimensions of Physical functioning (p = 0.036) and pain (p = 0.047). Conclusions: AD-CGs treated with MBI reduced their burden and depression and experienced an improvement in all the dimensions of quality of life.

Evidence of validity and accuracy for the Mindful Self-Care Scale-Brief among family caregivers of people with cancer in Brazil: A cross-sectional study.

OBJECTIVES: This study aimed to evaluate the evidence of validity and accuracy for the Mindful Self-Care Scale-Brief (B-MSCS) in Brazil among family caregivers of people with cancer. METHODS: This was a cross-sectional study with a sample of 203 family caregivers of people with cancer. The instruments used in this study were the following: B-MSCS, Brief Resilience Scale, and Brief Scale for Spiritual/Religious Coping. Exploratory factor analysis was carried out using the principal axis factoring method and direct oblimin oblique rotation, and confirmatory factor analysis using the robust weighted least squares means and variance adjusted estimation method and GEOMIM oblique rotation. The internal consistency of the latent factors was measured using Cronbach's alpha coefficients. RESULTS: The 6-factor model showed good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. The results that can support arguments in favor of validity evidence based on internal structure for the B-MSCS-Brazilian version (BR) relate to a 19-item version which, grouped into 6 latent factors, explained 46.47% of the variance. The factor solution reproduced 79.2% of the theoretically expected structure and 5 items were excluded. The Cronbach's alpha coefficient of the factors in the B-MSCS-BR ranged from 0.58 to 0.84. Positive religious/spiritual coping had a direct association with the B-MSCS-BR factors, with the exception of the Physical Care factor (r = 0.033, p = 0.635). Negative spiritual/religious coping was inversely associated with the Mindful Relaxation (r = -0.160, p = 0.023), Supportive Relationships (r = -0.142, p = 0.043), and Mindful Awareness factors (r = -0.140, p = 0.045). There were no associations between the B-MSCS-BR factors and resilience. SIGNIFICANCE OF RESULTS: The findings reveal that the B-MSCS (19-item) is a valid, reliable, and culturally-appropriate instrument to examine the practice of mindful self-care by family caregivers of people with cancer in Brazil.

Using the Carers' Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments.

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

Parental Satisfaction with the Quality of Care in an Early Intervention Service for Children with Visual Impairment: A Retrospective Longitudinal Study.

The fundamental role of vision during development and the nurturing role of early intersubjectivity have enabled the Robert Hollman Foundation to develop an early intervention program providing holistic support to visually impaired children and their families, where fostering parent-infant interactions is at the heart of our care. The aim of this study is to understand how parents perceive this approach. It is an eleven-year retrospective study of children following the Robert Hollman Foundation's early intervention program, in which parents' (n = 1086) perceptions of quality of care were measured through the administration of a specifically designed 4-point scale questionnaire. Annual longitudinal trends of parents' perceptions were calculated for every single response. Parents reported a very high satisfaction value in 21/23 questions (Mean > 3.7 out of a maximum score of 4, with the highest scores in human and soft skills of professionals) with a statistically positive trend (p < 0.05), throughout the period considered. Our core approach, based on an individualized nurturing relational support, has been appreciated and confirmed by the high satisfaction reported in the questionnaires by parents of children with visual impairment. We therefore hypothesize that parent-infant relationship-based and individualized approaches may help parents achieve better health, well-being, and quality of daily life for their children.

Strategies used for childhood chronic functional constipation: the SUCCESS evidence synthesis.

Background: Up to 30% of children have constipation at some stage in their life. Although often short-lived, in one-third of children it progresses to chronic functional constipation, potentially with overflow incontinence. Optimal management strategies remain unclear. Objective: To determine the most effective interventions, and combinations and sequences of interventions, for childhood chronic functional constipation, and understand how they can best be implemented. Methods: Key stakeholders, comprising two parents of children with chronic functional constipation, two adults who experienced childhood chronic functional constipation and four health professional/continence experts, contributed throughout the research. We conducted pragmatic mixed-method reviews. For all reviews, included studies focused on any interventions/strategies, delivered in any setting, to improve any outcomes in children (0-18 years) with a clinical diagnosis of chronic functional constipation (excluding studies of diagnosis/assessment) included. Dual reviewers applied inclusion criteria and assessed risk of bias. One reviewer extracted data, checked by a second reviewer. Scoping review: We systematically searched electronic databases (including Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature) (January 2011 to March 2020) and grey literature, including studies (any design) reporting any intervention/strategy. Data were coded, tabulated and mapped. Research quality was not evaluated. Systematic reviews of the evidence of effectiveness: For each different intervention, we included existing systematic reviews judged to be low risk of bias (using the Risk of Bias Assessment Tool for Systematic Reviews), updating any meta-analyses with new randomised controlled trials. Where there was no existing low risk of bias systematic reviews, we included randomised controlled trials and other primary studies. The risk of bias was judged using design-specific tools. Evidence was synthesised narratively, and a process of considered judgement was used to judge certainty in the evidence as high, moderate, low, very low or insufficient evidence. Economic synthesis: Included studies (any design, English-language) detailed intervention-related costs. Studies were categorised as cost-consequence, cost-effectiveness, cost-utility or cost-benefit, and reporting quality evaluated using the consensus health economic criteria checklist. Systematic review of implementation factors: Included studies reported data relating to implementation barriers or facilitators. Using a best-fit framework synthesis approach, factors were synthesised around the consolidated framework for implementation research domains. Results: Stakeholders prioritised outcomes, developed a model which informed evidence synthesis and identified evidence gaps. Scoping review: 651 studies, including 190 randomised controlled trials and 236 primary studies, conservatively reported 48 interventions/intervention combinations. Effectiveness systematic reviews: studies explored service delivery models (n = 15); interventions delivered by families/carers (n = 32), wider children's workforce (n = 21), continence teams (n = 31) and specialist consultant-led teams (n = 42); complementary therapies (n = 15); and psychosocial interventions (n = 4). One intervention (probiotics) had moderate-quality evidence; all others had low to very-low-quality evidence. Thirty-one studies reported evidence relating to cost or resource use; data were insufficient to support generalisable conclusions. One hundred and six studies described implementation barriers and facilitators. Conclusions: Management of childhood chronic functional constipation is complex. The available evidence remains limited, with small, poorly conducted and reported studies. Many evidence gaps were identified. Treatment recommendations within current clinical guidelines remain largely unchanged, but there is a need for research to move away from considering effectiveness of single interventions. Clinical care and future studies must consider the individual characteristics of children. Study registration: This study is registered as PROSPERO CRD42019159008. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 128470) and is published in full in Health Technology Assessment; Vol. 28, No. 5. See the NIHR Funding and Awards website for further award information.

Between 5% and 30% of children experience constipation at some stage. In one-third of these children, this progresses to chronic functional constipation. Chronic functional constipation affects more children with additional needs. We aimed to find and bring together published information about treatments for chronic functional constipation, to help establish best treatments and treatment combinations. We did not cover assessment or diagnosis of chronic functional constipation. This project was guided by a 'stakeholder group', including parents of children with constipation, people who experienced constipation as children, and healthcare professionals/continence experts. We carried out a 'scoping review' and a series of 'systematic reviews'. Our 'scoping review' provides an overall picture of research about treatments, with 651 studies describing 48 treatments. This helps identify important evidence gaps. 'Systematic reviews' are robust methods of bringing together and interpreting research evidence. Our stakeholder group decided to structure our systematic reviews to reflect who delivered the interventions. We brought together evidence about how well treatments worked when delivered by families/carers (32 studies), the wider children's workforce (e.g. general practitioner, health visitor) (21 studies), continence teams (31 studies) or specialist consultant-led teams (42 studies). We also considered complementary therapies (15 studies) and behavioural strategies (4 studies). Care is affected by what is done and how it is done. We brought together evidence about different models of delivering care (15 studies), barriers and facilitators to implementation of treatments (106 studies) and costs (31 studies). Quality of evidence was mainly low to very low. Despite numerous studies, there was often insufficient information to support generalisable conclusions. Our findings generally agreed with current clinical guidelines. Management of childhood chronic functional constipation should be child-centred, multifaceted and adapted according to the individual child, their needs, the situation in which they live and the health-care setting in which they are looked after. Research is needed to address our identified evidence gaps.

Advancing Methodological Rigor for Psychosocial Aspects of Neuropalliative Care Interventions.

Background: Neurological disorders (NDs) have unique biopsychosocial-spiritual features that impact patients and their families. As a result, the subspeciality of neuropalliative care (NPC) emerged within the past decade and has grown exponentially in research and practice. Given the cognitive, emotional, and behavioral changes associated with NDs, psychosocial components (eg, coping skills) of NPC interventions are essential for improving the quality of life for patients and families. However, psychosocial components of NPC interventions warrant more rigorous testing to improve their evidence base and their likelihood of implementation and dissemination. Aim: In this commentary, we provide methodological recommendations with the goal of improving scientific knowledge and rigor for psychosocial components of multicomponent NPC interventions in clinical trials. Results: We emphasize the need for transparent reporting of psychosocial intervention components; using established models of intervention development to guide the development and testing of multicomponent NPC interventions; identifying mechanisms of action for psychosocial outcomes; and choosing psychometrically sound measures for mechanisms and outcomes. Conclusions: Given the importance of psychosocial care to the holistic NPC model, rigorous testing of psychosocial components of NPC interventions is a high priority for clinical investigators to advance the evidence base and practice of NPC.

The Social Ecology of Caregiving: Applying the Social-Ecological Model across the Life Course.

Family caregivers provide care to people with disabilities, as well as ill and older adults, often with little to no outside assistance from the formal long-term care system. They are the backbone of long-term care, and it is a misconception that the majority of people institutionalize disabled people and older adults in the United States. Youth caregiving is under-examined in the field of public health and is in need of theoretical and practical attention. Building upon the work of Talley and Crews and Bronfenbrenner, we aim to broaden the scope of the discussion around caregiving through the application of the social-ecological model (SEM) to inform research and practice. This paper picks up where they left off, digging deeper into the ecological model to reimagine research, policy, and practices related to youth and young adult caregivers that are rooted in this framework. This application highlights care as embedded in social relations while allowing for an exploration of the ways structural barriers impact the caring unit. Looking holistically at the unit, rather than individuals as service users, provides an opportunity for understanding the interconnectedness of those giving and receiving care. It does so by rendering visible the interdependence of the caring unit, and the myriad structures, which bear down on care at the individual and household levels. This approach runs counter to dominant thinking, which focuses exclusively on the individuals involved in caregiving relationships, rather than considering them as interdependent units of care. This paper provides an analytic contribution, utilizing a narrative composite vignette based on literature and previous research.

Caregivers' experiences of accessing HIV Early Infant Diagnosis (EID) services and its barriers and facilitators, India.

BACKGROUND: India has rolled out Early Infant Diagnosis (EID) program for HIV infection in all states. EID program consists of testing of Infants exposed to HIV periodically over 18 months of age which is a multi-step complex testing cascade. Caregivers represent the primary beneficiary of EID program i.e., infants exposed to HIV and face multiple challenges to access EID services. As part of national EID program outcome assessment study, this study narrates caregivers' perspectives on barriers and facilitators to access and utilize EID services. METHODS: The study was conducted in 31 integrated counselling and testing centres (ICTCs) located in 11 high burden HIV states. A total of 66 in-depth interviews were conducted with caregivers' of infants enrolled in EID program. Thematic analysis was carried out to help identify themes underlying barriers and facilitators to access EID services and utilization from caregivers' perspectives. RESULTS: The stigma and discrimination prevalent in society about HIV remains a key demand side (caregiver-level) barrier. Non-disclosure or selective disclosure of HIV status led to missed or delayed EID tests and delayed HIV diagnosis and initiation of Anti-Retroviral Therapy (ART) for infants exposed to HIV. On supply side (health system-level), accessibility of healthcare facility with EID services was reported as a key barrier. The distance, time and cost were key concerns. Many caregivers faced difficulties to remember the details of complex EID test schedule and relied on a phone call from ICTC counsellor for next due EID test. Delayed EID test results and lack of communication of test results to caregiver were reported as primary barriers for completing the EID test cascade. DISCUSSION: The study reports caregiver-level and health system-level barriers and facilitators for access to EID services from the caregivers' perspectives. While, decentralisation and single window approaches can improve the access, timely communication of test results to the caregiver also need to be built in with appropriate use of technology. A holistic intervention including PLHIV support networks and the peer-led support mechanisms would be useful to address societal factors. CONCLUSION: The study findings have high significance for developing program implementation strategies to improve access and to build right-based and patient-centred EID services.