Complementary feeding practices of caregivers of infants with Down syndrome as compared to caregivers of typically developing infants.

Caregiver feeding practices during the complementary feeding period (6 months-2 years) may be particularly important for infants with Down syndrome (DS) as they are at higher risk for later health conditions (e.g., obesity, diabetes) that can be influenced by early feeding practices. However, how well caregivers of infants with DS are meeting infant feeding evidence-based practices is relatively unknown. Caregivers of infants with DS (N = 75) and caregivers of typically developing (TD) infants (N = 66) aged 0-2 years completed an online survey about their infant feeding practices and information sources. Caregiver practices and information sources were statistically compared between groups. Results indicated that there are significant differences in the feeding practices of caregivers of infants with DS when compared to caregivers of TD infants. Caregivers of infants with DS were less likely to meet infant feeding evidence-based practices than caregivers of TD infants. Caregivers of infants with DS were also more concerned about their infant's food intake and later weight status. Some individual feeding practices also significantly differed between groups, with caregivers of infants with DS more likely to meet evidence-based practices of purchasing iron rich foods and avoiding added salt, but less likely to use responsive feeding practices than caregivers of TD infants. Caregivers of infants with DS were also less likely to receive information about how to navigate the complementary feeding period than caregivers of TD infants. Coupled with existing research, the results of the present study suggest that infant feeding evidence-based practices should be reviewed for their appropriateness for this population and additional support for caregivers of infants with DS should be implemented to help them navigate this important period.

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.

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.

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.

Supportive care for elderly patients with cancer.

This review highlights the significance of supportive care for elderly patients with cancer and their caregivers. Supportive care for older patients with cancer focuses on improving their quality of life by addressing physical, psychological, social, and spiritual aspects related to the treatment and care of the patient. Patient-reported outcomes and family involvement may play significant roles in providing holistic support. Interdisciplinary collaboration among healthcare professionals ensures effective treatment and enhances the patient's journey throughout the disease trajectory.

Music therapy for supporting informal carers of adults with life-threatening illness pre- and post-bereavement; a mixed-methods systematic review.

BACKGROUND: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement). METHODS: Eligibility: adult informal carers of adults at end of life or bereaved; music therapy interventions for improving health-related outcomes; qualitative; mixed-method; and quantitative studies including comparators of any other intervention; published in English from 1998 onwards. Six databases were searched up to July 2022. A JBI mixed-methods systematic review approach was followed throughout, including quality appraisal, data extraction and a convergent segregated approach to synthesis and integration. RESULTS: A total of 34 studies were included, published between 2003 and 2022. Most were conducted in North America (n = 13), Australia (n = 10), or Europe (n = 8). No studies were conducted in low- and middle-income countries or in the UK. The majority were qualitative (n = 17), followed by quasi-experimental (n = 8), mixed-methods (n = 7) and two RCTs. The majority focused on carers of individuals with dementia (n = 21) or advanced cancer (n = 7). Seventeen studies were purely quantitative or included a quantitative component. During meta-synthesis, findings were aligned to core outcomes for evaluating bereavement interventions in palliative care and previously identified risk factors for complicated grief. Commonly targeted outcomes in quantitative studies included quality of life and mental wellbeing, showing equivocal effectiveness of music therapy with significant and non-significant results. Twenty-two studies either purely qualitative or with a qualitative component underwent meta synthesis and suggested a diverse range of improved pre- and post-bereavement outcomes for informal carers across all core outcomes, and across all risk and protective factors, including psychological, spiritual, emotional, and social outcomes. CONCLUSIONS: Qualitative studies provide moderate to strong evidence for improved health-related outcomes for adult informal carers of adults with life-threatening illness pre-bereavement. Limited studies including those bereaved negates conclusions for the bereavement phase. Comparisons and explanations for effectiveness across quantitative and qualitative studies are equivocal, with a high risk of bias and small samples in the limited number of quantitative studies, demonstrating a need for high-quality RCTs. SYSTEMATIC REVIEW PRE-REGISTRATION: PROSPERO [CRD42021244859].

Caring for children with medical complexity at home: An integrative review.

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.

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.

The Role of Spirituality for Coping with Cancer and the Spiritual Care Needs of Women with Breast Cancer and their Family Caregivers in Turkey: A Qualitative Study.

This study aims at determining the spiritual care needs of women with breast cancer and their family caregivers, as well as the effect of spirituality on coping with this illness. This qualitative research utilized a phenomenological design. In-depth individual interviews were conducted with breast cancer women and family caregivers. A total of 26 participants (13 women with breast cancer and 13 family caregivers) were involved. The data were examined using inductive thematic analysis. Three main themes were identified: "Being diagnosed with breast cancer; its emotional and life-related impacts;" "Spirituality in fighting with cancer;" and "Caring period and needs". The results showed that the diagnosis and treatment of breast cancer have multifaceted effects on women and their family caregivers. Spirituality was found to be an essential factor in coping with cancer for women with cancer and their family caregivers. In addition, the results showed that women and family caregivers have some unmet spiritual care needs.

Dyadic Art Appreciation and Self-Expression Program (NCGG-ART) for People with Dementia or Mild Cognitive Impairment and Their Family Caregivers: A Feasibility Study.

BACKGROUND: Non-pharmacological interventions effective for depressive mood and bilateral relationships among persons with cognitive impairment (PwCI) and their family caregivers (FCGs) have not been established. OBJECTIVE: To examine the feasibility of a newly developed group-based art appreciation and self-expression program (NCGG-ART) for dyads of PwCI and their FCGs. METHODS: This pilot randomized control trial included 34 dyads of PwCI diagnosed with mild to moderate Alzheimer's disease or mild cognitive impairment, and their FCGs, from an outpatient rehabilitation service (Holistic Physio-Cognitive Rehabilitation [HPCR]). Participants were randomly divided equally into the HPCR (control group) or NCGG-ART and HPCR (intervention group) groups. Both included 1-hour weekly, 6-week programs. The primary outcome was depressive symptoms among FCGs assessed using the Patient Health Questionnaire-9 (PHQ-9). Feasibility outcomes included participant satisfaction and motivation. FCGs were interviewed about their experiences and feelings regarding the program, which were analyzed using content analysis. RESULTS: Thirty-two dyads (intervention group:16; control group:16) completed the study period. High participation rates, satisfaction, and motivation were demonstrated throughout the intervention. Scores in the PHQ-9 among FCGs did not show positive effects: mean changes in the score were 1.3 for the intervention group and -0.8 for the control group (Cohen d:0.56). However, the qualitative analysis revealed favorable experiences and feelings of the FCGs, such as positive emotions, social interactions, and person-centered attitudes to and positive relationships with PwCI. CONCLUSIONS: This program demonstrated high feasibility with FCGs' favorable responses to emotions and relationships with PwCI, ensuring future investigations with a confirmatory study design.

Some differences between social work, spiritual care, and psychology: Content variance in end-of-life conversations.

OBJECTIVES: Within the multidisciplinary team, there can sometimes be lack of clarity as to the specific different contributions of each of the psycho-social-spiritual professionals: social workers, psychologist, and spiritual caregivers. This study examined the content of their end-of-life conversations with patients. METHODS: A total of 180 patients with terminal cancer received standard multidisciplinary care, including conversations with a social worker, psychologist, and spiritual caregiver. After each patient's death, these professionals reported using a structured tool which content areas had arisen in their conversations with that patient. RESULTS: Across all content areas, there were significant differences between social work and spiritual care. The difference between social work and psychology was slightly smaller but still quite large. Psychology and spiritual care were the most similar, though they still significantly differed in half the content areas. The differences persisted even among patients who spoke with more than 1 kind of professional. The 6 content areas examined proved to subdivide into 2 linked groups, where patients speaking about 1 were more likely to speak about the others. One group, "reflective" topics (inner and transpersonal resources, interpersonal relationships, one's past, and end of life), included all those topics which arose more often with spiritual caregivers or psychologists. The second group, "decision-making" topics (medical coping and life changes), was comprised of those topics which arose most commonly with social workers, bridging between the medical and personal aspects of care and helping patients navigate their new physical, psychological, and social worlds. SIGNIFICANCE OF RESULTS: These findings help shed light on the differences, in practice, between patients' conversations with social workers, psychologists, and spiritual caregivers and the roles these professionals are playing; can aid in formulating individualized care plans; and strengthen the working assumption that all 3 professions contribute in unique, complementary ways to improving patients' and families' well-being.

Predictors of emotional intelligence among family caregivers of cancer patients: A cross-sectional study.

BACKGROUND: Family caregivers of cancer patients must have strong emotional intelligence skills essential for understanding one's and others' feelings and learning how to cope. OBJECTIVES: The present study aims to determine the predictive factors of emotional intelligence and its relationship with spiritual intelligence, coping, and knowledge and experience about pain among family caregivers of cancer patients in Iran. METHODS: A cross-sectional, descriptive study was conducted in 2020-2021. Two hundred twenty-six family caregivers of cancer patients participated in this study. The data collection tools were Wong and Law's emotional intelligence, King's spiritual intelligence, Brief Cope, and the family pain questionnaire. Following determining the variables' correlation, linear regression was carried out. RESULTS: Emotional intelligence had a significant correlation with age (r = 0.20, p = .003), academic degree (r = 0.15, p = .032), duration of care (r = 0.15, p = .032), and spiritual intelligence (r = 0.30, p < .001). The regression model accounted for 12.4% of the variance in emotional intelligence; age (ß = 0.16, p < .021) and spiritual intelligence (ß = 0.26, p < .001) were significant explanatory variables. CONCLUSIONS: Emotional intelligence is correlated with age, academic degree, duration of care, and spiritual intelligence, but only age and spiritual intelligence were found to be predictive factors for emotional intelligence in the family caregivers of cancer patients.

The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study.

INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.

Experiences and needs of adult informal carers of adults at risk of suicide: A systematic review with mixed methods analysis.

AIM: To systematically review and synthesize primary research on experiences and needs of adult informal caregivers of adults at risk of suicide. DESIGN: Systematic review with a data-based convergent synthesis. DATA SOURCES: MEDLINE, PsychINFO and CINAHL were searched in April 2022 and February 2023. English language research focusing on experiences of adult carers of adults was included. METHODS: Articles were screened by title (n = 9077) and abstract (n = 132) with additional articles (n = 6) obtained via citation and hand searching. Thirty-one included studies were quality assessed using the Mixed Methods Appraisal Tool and study data were systematically extracted prior to thematic synthesis. RESULTS: Five interconnected themes resulted: transitions; living with fear and uncertainty; changing relationships; interface with healthcare professionals and services; what carers need and want. Caring impacts mental, physical and social wellbeing. Relationships are affected in ways which might not be evident when caring for a minor. Repeated suicidal behaviour is particularly challenging with ongoing hypervigilance contributing to burden, burnout and interpersonal strain. Poor carer support exacerbates negative effects; carers need to feel informed, educated, involved and holistically supported. CONCLUSION: Timely support for carers is essential. Interventions should address emotional responses, relational changes and effective care recipient support. Longitudinal research is required to understand effects of ongoing caring where there are multiple suicide attempts. IMPLICATIONS: Nurses can provide carers with early support and information and longer term psychosocial interventions. If carers are adequately equipped and supported patient safety and wellbeing will be improved. IMPACT: Findings of this systematic review include relational changes due to carer hypervigilance reducing autonomy and living with the possibility of suicide. Clinician awareness of the potential for relational shifts will help them prepare and support carers. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution.

Caregiver Resilience and Dance/Movement Therapy: A Theoretical Review and Conceptual Model.

With the population aging, more people are living with neurodegenerative conditions, leading to an influx of informal family caregivers, who often experience negative health outcomes. Few caregiver interventions have successfully adopted a holistic, strengths-based approach to fostering resilience. This article examines existing literature on caregiver resilience factors, which include self-efficacy, flexibility, cultivating positive emotions, and drawing on spiritual and social supports. Despite how dance/movement therapy (DMT) has been shown to foster psychological and physiological benefits, it remains underexplored for caregivers. Therapeutic mechanisms of DMT are expounded for their innate correspondence to resilience factors, and a new comprehensive model of DMT for caregiver resilience is presented, with implications for future intervention design and measurement.

Engaging carers in neuropsychological rehabilitation for brain cancer survivors: The "I'm aware: Patients And Carers Together" (ImPACT) program.

BACKGROUND: Cognitive impairment is a common late effect in child and adult brain cancer survivors (BCS). Still, there is a dearth of research aimed at therapeutic interventions and no standard treatment options for most BCS. OBJECTIVE: To describe 1) a novel neuropsychological rehabilitation program for BCS - the "I'm aware: Patients And Carers Together" (ImPACT) program, and 2) two studies that aim to assess the feasibility of the ImPACT program in child and adult BCS, respectively. The program adapts the holistic neuropsychological approach pioneered by Leonard Diller and Yehuda Ben-Yishay to an outpatient setting. METHODS: Two feasibility studies are described: 1) A single-armed study with 15 child BCS (10-17 years) (ImPACT Child); and 2) a randomized waitlist-controlled trial with 26 adult BCS (>17 years) (ImPACT Adult). In both studies, patients will undergo an 8-week program together with a cohabiting carer. Primary outcomes (i.e., cognitive and neurobehavioral symptoms), and secondary outcomes (i.e., behavioral and psychological symptoms, e.g., quality of life, fatigue) will be assessed at four time points: pre-, mid-, and post intervention, and 8 weeks follow-up. Adult waitlist controls will be assessed at equivalent time points and will be included in the intervention group after all study assessments. Semi-structured interviews will be conducted at follow-up. EXPECTED OUTCOMES: Results will provide feasibility data in support of future larger scale trials. DISCUSSION: The findings could potentially improve the management of cognitive impairment in BCS and transform available services. The program can be delivered in-person or remotely and harnesses existing resources in patients' lives.

A qualitative study on the caregiver burden experience in home reflux enema management of infants with congenital megacolon.

OBJECTIVE: This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions. METHODS: A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi's 7-step analysis method, leading to the identification of key themes. RESULTS: The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support. CONCLUSIONS: This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung's disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate "Internet + collaborative nursing" to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities.

Understanding the home environment of older adults living with dementia: A scoping review of assessment tools.

Rigorous assessments to better understand the person-environment interaction are essential to comprehend how neurocognitive disorders influence in-home functioning of older people living with dementia. No recent synthesis identifies validated instruments targeting the human (e.g. caregivers) and nonhuman (e.g. objects) elements of the home environment interacting with this population and used with the perspective of aging in place. Consequently, following Arksey and O'Malley's (2005) scoping review method, 2,182 articles were identified in six databases and in gray literature. Two reviewers independently selected 23 relevant articles describing 19 validated assessment tools targeting elements of the home interacting with older people with dementia, namely: nonhuman environment (n = 13), human environment (n = 3), and person-environment interaction (n = 3). This overview highlights the scarcity of tools addressing the human environment and the person-environment interaction to foster sustainable at-home living for older people with neurocognitive disorders, demonstrating the need to incorporate new evidence-based, holistic methods into dementia home care.

Exploring stakeholders' experiences of comprehensive geriatric assessment in the community and out-patient settings: a qualitative evidence synthesis.

BACKGROUND: Comprehensive Geriatric Assessment (CGA) is a multidimensional interdisciplinary process that addresses an older adult's biopsychosocial capabilities to create an integrated and co-ordinated plan of care. While quantitative evidence that demonstrates the positive impacts of CGA on clinical and process outcomes has been synthesised, to date qualitative research reporting how older adults and service providers experience CGA has not been synthesised. This study aimed to systematically review and synthesise qualitative studies reporting community-dwelling older adults', caregivers' and healthcare professionals' (HCP) experiences of CGA in the primary care and out-patient (OPD) setting. METHOD: We systematically searched five electronic databases including MEDLINE, CINAHL, PsycINFO, PsycARTICLES and Social Sciences Full Text targeting qualitative or mixed methods studies that reported qualitative findings on older adults', caregivers' and HCPs' experiences of CGA in primary care or out-patient settings. There were no language or date restrictions applied to the search. The protocol was registered with the PROSPERO database (Registration: CRD42021283167). The methodological quality of the included studies was appraised using the Critical Appraisal Skills Programme checklist for qualitative research. Results were synthesised according to Noblit and Hare's seven-step approach to meta-ethnography, which involves an iterative and inductive process of data synthesis. RESULTS: Fourteen studies were included where CGA was completed in the home, general practice, out-patient setting in acute hospitals and in hybrid models across the community and hospital-based OPD settings. Synthesis generated four key themes: (1) CGA is experienced as a holistic process, (2) The home environment enhances CGA, (3) CGA in the community is enabled by a collaborative approach to care, and (4) Divergent experiences of the meaningful involvement of older adults, caregivers and family in the CGA process. CONCLUSION: Findings demonstrate that CGA in a home-based or OPD setting allows for a holistic and integrated approach to care for community-dwelling older adults while increasing patient satisfaction and accessibility of healthcare. Healthcare professionals in the community should ensure meaningful involvement of older adults and their families or caregivers in the CGA process. Further robustly designed and well reported trials of different models of community-based CGA informed by the findings of this synthesis are warranted.

Dimensions of suffering and the need for palliative care: experiences and expectations of patients living with cancer and diabetes and their caregivers in Mexico - a qualitative study.

OBJECTIVES: Over 40 million people in low-income and middle-income countries (LMICs) experience serious health-related suffering (SHS) annually and require palliative care. Patient and caregiver experiences of SHS in LMICs are understudied despite their importance in guiding palliative care provision. Diabetes and cancer are the second-leading and third-leading causes of death in Mexico, causing a significant SHS burden on patients, families and health systems. This study examines SHS and palliative care from the point of view of patients with cancer and diabetes and their caregivers. DESIGN: A qualitative descriptive study based on in-depth telephone interviews was conducted between August 2021 and February 2022. Data were analysed through inductive thematic analysis. PARTICIPANTS: Overall, 20 patients with end-stage cancer, 13 patients with diabetes and 35 family caregivers were interviewed individually. SETTING: Participants were recruited from two family medicine clinics and a pain clinic in Mexico City. RESULTS: Seven themes emerged: (1) suffering as a multifaceted phenomenon, (2) diversity in perceptions of suffering, (3) different coping strategies, (4) need and perceived importance of relief from suffering, (5) barriers to accessing services to relieve suffering, (6) demand for the health sector's active and humane role in addressing suffering and (7) preferences and need for comprehensive care for relief from suffering. The primary coping strategies included family companionship, protective buffering and faith-based support. Participants lacked knowledge of palliative care. They expressed the importance of relief from suffering, viewing it as the health sector's responsibility and requesting more humane, personalised care and access to medicines and pain clinics. CONCLUSIONS: The multifaceted nature of SHS highlights the health system's responsibility to provide high-quality palliative care. Policies to enhance access to palliative care should integrate it into primary care, redesigning services towards patient and caregiver biopsychosocial and spiritual needs and ensuring access to medicines and competent health personnel.