Caregiver Perspectives Research Articles

Self-Injury and the Treatment Gap: An Interdisciplinary Exploration of Beliefs About Causal Variables and Treatment Goals Among Caregivers, Researchers, and Clinicians

ABSTRACT Introduction There is a gap between individuals with intellectual and developmental disabilities (IDD) who need treatment for self-injurious behavior (SIB) and those who receive it. One contributing factor may be a multiplicity of beliefs about the nature of SIB and its treatment. Methods Using reflexive thematic analysis, we interviewed and integrated two knowledge sources: the perspectives of family caregivers for individuals with SIB and IDD and the perspectives of clinicians and researchers who treat and study self-injury. Results We present results from two primary belief categories: perceptions of causal variables and treatment goals. Conclusion By contextualizing the current paradigms of research and practice in self-injury as siloed depending on whether an individual does or does not have IDD, we discuss ways to deepen our understanding of the process of treatment provision for self-injurious behavior to inform efforts to close the treatment gap.

Unveiling Layers of Interaction: An Investigation into the Behavioral Transformations of Preschoolers with Autism Spectrum Disorder Through Assistive Technology from a Caregiver’s Perspective

This qualitative study explores the impacts of assistive technology (AT) on preschoolers with autism spectrum disorder (ASD) from the perspective of caregivers who observe and experience these behavioral changes firsthand within the home environment. Utilizing a phenomenological research design, the study involved semi-structured interviews with 10 caregivers, including both mothers and grandmothers. The analysis revealed several key themes: enhanced communication, improved social interaction, learning and development, challenges and support needs, and the variety and everyday usefulness of AT. Caregivers reported significant advancements in both verbal and nonverbal communication, increased family and peer interactions, and the development of academic and life skills in their children. However, challenges such as technical difficulties and the need for professional support were also highlighted. The study underscores the potential of AT to significantly improve the quality of life for children with ASD while also emphasizing the importance of robust support systems to optimize AT utilization. These findings contribute to a deeper understanding of the nuanced impacts of AT on children with ASD, offering valuable insights for future research and intervention strategies. Received: 8 September 2024 / Accepted: 31 October 2024 / Published: 05 November 2024

Black Caregiver Perspectives During a Developmental Diagnostic Interview.

Despite increasing autism prevalence rates across racial and ethnic groups, research has traditionally overlooked the influence of culture on developmental diagnostic conversations. Addressing this gap in research is crucial to understanding and mitigating potential disparities in diagnostic experiences, especially among Black caregivers. Black caregivers encounter frustration and discrimination during the diagnostic process, citing dismissiveness and a lack of cultural competence from healthcare providers. To address these issues, this study centers the perspectives of Black caregivers as they participate in a developmental diagnostic program for toddlers under three years of age. This retrospective qualitative study, conducted exclusively by a Black research team, involved nineteen Black caregivers of thirteen toddlers as they participated in semi-structured interviews conducted by a multidisciplinary clinical team. The research team employed a conceptual content analysis to examine caregivers' descriptions of their children's behaviors and characteristics, as well as the factors and experiences associated with their descriptions. Caregivers provided distinct descriptions of behaviors and characteristics in the categories of language and communication, learning, and temperament, associating them with situational and dispositional factors and experiences. The findings offer valuable insights for implementing culturally responsive diagnostic practices. Additionally, these results may enhance the quality of caregiver-provider interactions during developmental assessment, leading to earlier and more accurate diagnoses for Black children.

Cancer Prevention in Adults with Intellectual Disabilities: A Systematic Literature Review of Caregiver Perspectives in Institutional and Home Care Settings

Background: Individuals with intellectual disabilities (IDs) face unique challenges in accessing cancer prevention measures. Caregivers play a crucial role in facilitating these measures, yet their perspectives are under-researched. Methods: This systematic literature review explores caregiver perspectives on cancer prevention for adults with IDs in institutional and home care settings, aiming to understand their roles, knowledge, and challenges. Thirteen articles from the UK, the USA, Canada, and Ireland were analyzed through thematic synthesis. Four overarching themes were identified: breast cancer screening perspectives, caregivers’ knowledge and barriers to cancer prevention, caregivers’ perspectives, and cultural context and decision-making. Results: Caregivers, including healthcare professionals and family members, are essential in facilitating breast cancer screening for individuals with IDs. Challenges include explaining screening procedures, limited awareness, and logistical barriers, highlighting the need for targeted educational interventions. Disparities in access underscore the necessity for comprehensive training programs. Healthcare professionals’ perspectives reveal existing disparities and suggest interventions for improved accessibility and understanding. Cultural context influences decision-making, emphasizing the importance of culturally sensitive care. The role of family caregivers in decision-making necessitates empowering and supporting them through tailored interventions. Conclusions: This review provides insights into the challenges and opportunities in cancer prevention for individuals with IDs, suggesting the need for educational interventions, training programs, and systemic changes to address disparities. It lays the groundwork for future research and the development of holistic and inclusive strategies in this critical healthcare domain.

Experiences and Perspective of Caretakers Working in Childcare Institutes in Delhi: A Qualitative Inquiry

Abstract Context: Institutional care is a common alternative for children who have been displaced from their homes due to a variety of socioeconomic factors. The quality of care and well-being of children in such institutions has been under research due to its long-lasting impacts on a child’s early development. However, the perspective of caregivers who are an important point of contact with the children is yet to be explored thoroughly. Aim: The current study aims to understand the experiences of caregivers in childcare institutes (CCIs) through a qualitative lens of inquiry. Settings and Design: The study has employed a qualitative, exploratory, inductive research design. Methodology: A semi-structured focus group discussion (FGD) schedule was developed, and FGDs were held with caregivers across seven CCIs in five districts of New Delhi. Qualitative Analysis: Using analysis software (QSR NVIVO 10), thematic analysis was conducted in two stages, namely, initial coding and focused coding to organize the data into meaningful themes. Results: The thematic analysis revealed a set of 4 main themes, 13 subthemes, and more than 200 codes emerging from the qualitative dataset. The themes threw light on key challenges and concerns that caretakers of children in institutional care often face. The caretakers’ current knowledge of psychological concerns and the gap in providing psychologically informed care for children is emphasized. Conclusion: The study highlights some key beliefs, such as stigma regarding mental health concerns and perceptions about their work as a “duty.” In addition, knowledge among caregivers about specific psychological issues such as self-harm and aggression may influence caring for children. Furthermore, prominent skillset challenges such as the management of children with emotional and behavioral concerns, and children with disability were highlighted. The findings reveal that the caregivers experience workplace burden due to a lack of adequate resources and specialized knowledge in childcare.

Caregiver Experiences, Healthcare Provider Perspectives and Child Outcomes with Virtual Care in a Neonatal Neurodevelopmental Follow-Up Clinic: A Mixed-Methods Study

Background: Caregiver and healthcare provider perspectives of virtual care have not been explored in depth in the literature for neonatal follow-up clinics. Our objective was to evaluate caregivers’ and healthcare providers’ perspectives and compare neurodevelopmental outcomes of preterm neonates before and after implementing virtual care during the SARS-CoV-2 pandemic. Methods: Semi-structured interviews were conducted with families and healthcare providers, designed and analyzed using phenomenological qualitative methods. A retrospective cohort study was conducted to evaluate and compare neurodevelopmental characteristics of two preterm cohorts, one before (“in-person”) and after (“virtual”) virtual care. Results: Three themes were identified: increased confidence in in-person assessments, adequate delivery of information using virtual platforms and a preference for specialized care through the neonatal follow-up clinic. A total of 252 infants born preterm, 104 infants in the in-person group and 148 infants in the virtual group, were included in the study. The adjusted odds ratio (aOR) of cerebral palsy was lower when virtual care was used compared to in-person assessments (aOR = 0.11, 95% CI 0.01–0.98) while the adjusted odds of cognitive delay measured by in-person standardized testing were higher (aOR = 2.78, 95% CI 1.25–6.19). Conclusions: Caregivers and healthcare providers prefer in-person assessments for comprehensive developmental support. It may be more challenging to detect subtle cognitive differences using caregiver-reported measures. Cerebral palsy may be missed when assessments are completed virtually.

Factors influencing delayed cancer health seeking in Meghalaya, Northeast India: A qualitative study

Background & objectives India accounts for about seven per cent of the global cancer burden with the highest cancer incidence reported from the North-Eastern Region (NER), including Meghalaya. Despite this, there is paucity of published studies on health seeking behaviour for cancer in the NER. To address this gap, this study used a qualitative approach to document patient, caregiver and provider perspectives to understand the factors influencing healthcare seeking for cancers in Meghalaya. Methods In-depth interviews were undertaken with 37 individuals diagnosed with one of the top five cancers in Meghalaya, namely, oesophageal, breast, oral, cervical and lung cancer. They were identified from the State referral cancer hospital. Twelve caregivers and five healthcare providers were also interviewed. All interviews were conducted in the local language using semi-structured interview guides. Transcripts were translated to English, coded, categorized and analyzed using thematic framework content analysis approach. Results A key factor influencing delayed cancer treatment in Meghalaya included misconceptions regarding the causes of cancer and cultural concepts such as bih and skai (Khasi language), i.e. notions of a figurative ‘poison’ or ill intent that makes one susceptible to illness. A general reluctance to discuss cancer diagnoses, perceived stigma, apprehension of treatment methods influenced their decision. Other factors included negligence and misinterpretation of early symptoms of cancer, self-management, preference for traditional medicines, financial constraints and health system-related factors. Interpretation & conclusions This study underscores the importance of addressing barriers to cancer diagnosis and treatment in indigenous populations in northeast India, advocating for culturally appropriate messaging, capacity building for healthcare workers, integration of traditional healers, and community involvement to enhance early healthcare seeking and improve outcomes.

Treatment preferences in spinal muscular atrophy: A swing weighting study for caregivers of patients with SMA types 1 and 2.

Spinal muscular atrophy (SMA) is a genetic neuromuscular disorder characterized by skeletal muscle weakness and atrophy. Patients with SMA types 1 and 2 develop severe disabilities conferring substantial patient and caregiver burden. Caregiver treatment characteristic preferences are useful for informing treatment choices and improving adherence. We aimed to identify drivers of SMA treatment preference from the perspective of caregivers of patients with SMA types 1 or 2 in the United States. We quantified the relative importance of different treatment characteristics and compared preferences for hypothetical treatment scenarios. Treatment attributes and attribute levels elicited were based on a literature search and interviews with caregivers and health care professionals. The most important treatment characteristics from the perspective of health care professionals and caregivers were identified and used in a survey to quantify relative importance for caregivers. Caregivers completed surveys regarding their preferences using swing weighting methodology. These results were used to estimate the relative value of four hypothetical SMA treatment scenarios exploring different modes of treatment administration. The swing weighting survey, completed by 20 caregivers, demonstrated that the attributes driving treatment preference were reduction in permanent ventilation needs and risk of severe adverse events, followed by treatment access (including cost coverage and availability), increased ability to sit without support, and less treatment administration burden. The hypothetical SMA treatment scenarios with the highest relative value offered an easier mode of administration, lowest risk of severe adverse events, less need of permanent ventilation, and highest ability of patients to feed and sit without support. Our findings suggest that caregivers prefer a treatment with reduced clinical burden and risk in which the cost is covered and treatment is available in the short term. These results can provide important contextual information for decision-makers and help promote patient-centered care for patients with SMA.

Improving Hospital-to-Home for Medically Complex Children: Views From Spanish-Speaking Caregivers.

Children with medical complexity (CMC) experience increased risk of adverse events during and after hospitalization, and these risks are even greater for CMC whose caregiver has a preferred language other than English. Because many adverse events for CMC may be attributable to communication challenges, understanding caregiver and physician perspectives may help prevent adverse events. We conducted semistructured interviews with Spanish-speaking caregivers of hospitalized CMC and their inpatient attending physicians. Each interview was conducted 24 to 72 hours after hospital discharge. Interviews continued until thematic sufficiency was reached. Interviews were audio recorded, transcribed, and translated verbatim. Investigators independently coded and reconciled codes using constant comparison to develop themes via inductive thematic analysis. We conducted 28 interviews (14 caregivers, 14 physicians). Three themes were identified: (1) barriers exist in providing language-concordant care in planning for transitions from hospital-to-home; (2) both physicians and caregivers perceived logistical challenges in using interpreters at the point of care; and (3) many caregivers felt uncomfortable asking physicians questions related to their child's medical management because of their language barrier. Participants also offered strategies to improve the transition from hospital to home: (1) empower families to ask questions and take notes, (2) consider the use of medical educators, and (3) improve the ability of hospital-based physicians to follow up with patients after discharge. Physicians strive for language-concordant care at each stage of discharge planning. However, unresolved gaps such as the lack of interpreter availability during medical-device education, require attention to promote safe transitions from hospital to home.

Caregiver Impressions of Bracing and Its Association With Unsuccessful Outcomes Throughout the Ponseti Treatment.

Clubfoot is a common congenital foot deformity, occurring in about 1 in 1000 live births. The Ponseti method consists of weeks of manipulation and serial casting, followed by years of orthotic wear. Recurrent or relapse deformity following the Ponseti method remains a challenging problem for many patients. Many studies have attributed relapse to noncompliance with the treatment plan, particularly during the maintenance phase. Many patient risk factors have been studied and attributed to recurrent deformity, but less emphasis has been placed on aspects of the treatment method from the caregiver's perspective. From 2010 to 2014, 127 patients between 1 and 354 days old who had been diagnosed with clubfoot were recruited for the parent study. At the initial visit, and each subsequent follow-up, the primary caregiver was given a questionnaire that included 21 binary belief questions exploring his or her experience with the Ponseti method. Univariate analyses were performed to find any relationship with caregiver responses and either clinical recurrence of the deformity or overall failure of treatment. Of the recruited patients, 126 were enrolled in the parent study and 100 were able to complete the full 3-year follow-up. Patient demographics and characteristics (sex, race, family history of clubfoot, laterality, and severity of deformity) were similar. Statistical analysis of the questionnaire responses found that choosing "yes" for either "I don't feel the braces are necessary" or "I am not comfortable with applying and removing the braces" was associated with significantly increased risk of overall failure. Gathering insight from the caregiver's perspective can help identify barriers to treatment not recognized by the provider. Lack of comfortability with the orthosis and lack of understanding are associated with increased risk of overall failure. A better understanding of the caregiver's perspective on barriers to treatment could help guide the Ponseti method provider's educational efforts. Level III.

Perceptions of Rural Access to Prenatal Care in the United States by Patients, Nurses, Midwives, and Physicians: An Integrative Review.

Despite substantial investments in maternity care, the United States continues to experience higher maternal mortality rates than most high-income countries. Rural regions lack adequate prenatal care services, a contributing factor to disparate maternal health outcomes. This integrative review on patient, nurse, midwife, physician, and community perspectives on accessing prenatal care in rural areas of the United States follows Whittemore and Knafl's integrative review framework, including a systematic literature search in various databases from January 1, 2010, to May 1, 2024. Eligible articles were published in English, peer-reviewed, and focused on subjective accounts of accessing prenatal care in rural areas of the United States. Seven articles met inclusion criteria and were assessed for quality using the Joanna Briggs Institute checklists. Three major categories influencing access to prenatal care in rural areas were developed. Individual factors included transportation, family support, motivation, and work commitments. Socioeconomic factors encompass health insurance, rurality, income, and housing. System factors involved the qualities of nurses, midwives, physicians, the clinic environment, and collaboration within the health care system. The findings emphasized the complexity of rural prenatal care access. Understanding patient and care giver perspectives on accessing prenatal care in rural areas is crucial for addressing the factors influencing maternal outcomes. Rural pregnant women face unique challenges, contributing to an increased risk of maternal morbidity and mortality. Further research is needed to explore their experiences and develop interventions to improve access and outcomes in rural areas.

Barriers and Facilitators to the Applicability of Adult Daycare Centers in Saudi Arabia: A Qualitative Study.

Adult daycare centers (ADCs) enable older adults to socialize and enjoy planned group activities while receiving healthcare services. These centers also assist caregivers by empowering them to remain in the workforce. This study aims to explore the challenges in establishing ADCs in Saudi Arabia (SA) from the perspectives of healthcare professionals, healthcare policymakers, older adults, and caregivers. Additionally, this study's objective is to identify the barriers, facilitators, and applicability of ADCs in SA. A qualitative study was conducted using semi-structured individual interviews. Inductive and deductive thematic analyses were employed to identify common themes regarding the barriers and facilitators to the applicability of ADCs in SA. Five researchers independently examined the transcripts using inductive analysis. Deductive analysis mapped the themes to Campinha-Bacote's cultural competence model. Data were collected from 46 participants, including caregivers, older adults, healthcare professionals, and healthcare policymakers. The findings highlight that the main facilitators to establishing ADCs in SA are the expected positive impact on the psychological and physical well-being of older adults and their caregivers. Conversely, cost and transportation, in addition to cultural considerations are possible barriers. This study identified the perceived benefits of ADCs for older adults and caregivers from a Saudi societal perspective. Thematic analysis showed that ADC's applicability in SA is possible, with some modifications to fit within the Saudi context. Additional efforts are necessary to promote the concepts and services that ADCs provide for older adults and to encourage support for these centers by non-profit organizations and the government.

Effectiveness of caregiver educational materials for paediatric community-acquired pneumonia in the emergency department: a qualitative study.

The objective of this study was to better understand caregiver perspectives on educational materials relating to paediatric community-acquired pneumonia and antibiotic stewardship in the emergency department setting. This was a phenomenologically informed qualitative study. Caregivers of young children in Hamilton, Ontario were presented with four educational materials (animated video, physician led lecture-style video, caregiver led testimony-style video, and a printed brochure) providing information relating to treatment strategies for community-acquired pneumonia. Caregivers were then asked open-ended questions about how they felt about the effectiveness of the media used. The principles of conventional content analysis guided the coding and synthesis of the transcribed interviews. Eleven caregivers were interviewed. Most caregivers preferred the animated video and brochure to the lecture-style physician video and caregiver testimonial video. Common themes for effective educational materials included visually attention-grabbing graphics, accessible language, and formats they could reference following their visit (e.g. brochure). The busy nature of the emergency department setting can impede effective communication between clinicians and parents. Employing educational materials may allow for more informed parent-provider communication on care decision making. Caregivers in our study prioritized the simplest information formats for education around community-acquired pneumonia and antimicrobial stewardship which could be referenced following discharge. This was best accomplished by short, animated videos and brochures. Results from this study can inform development of future educational materials used in paediatric emergency department settings to optimize caregiver education and corresponding care plan adherence.

Patient and Caregiver Perspectives on Gender Disparity in CKD: An Interview Study.

Chronic kidney disease (CKD) affects more women than men worldwide, however, men comprise the majority of patients who receive kidney replacement therapy. We aimed to describe the perspectives of patients and their caregivers regarding gender disparities in CKD. Semi-structured interviews were conducted with 45 patients with CKD (20 women) and 14 caregivers (12 women) from seven clinics in Austria. The interviews were analyzed thematically. Five themes were identified in this study. Participants perceived that women were "disadvantaged and vulnerable" (silent and intimidated, single mother predicament, impeded access to care and support due to socioeconomic disadvantage, had to fend for themselves); "fulfilling gender roles and norms" (primarily responsible for childcare, pressure to perform well as homemakers, put others' needs before their own, encouraging husband's treatment adherence), and "protecting their own health" (self-disciplined, vigilant, confronted health challenges, advocated for their needs). Men were seen to "place the onus of care on others" (expected help from family, relied on others for decisions). Both men and women experienced a "disease-related identity crisis and distress" (women: impaired body image, mental distress; men: denial and self-destruction, emasculated by sickness). Women with CKD felt vulnerable and were inclined to fulfill gender norms and responsibilities as caregivers but were also vigilant about protecting their own health. Men tended to be reluctant to accept CKD and appeared to depend on others for disease management. Better awareness and addressing these concerns can inform strategies to minimize gender disparities in access to care and outcomes in CKD.

The parental perspective of residential environments associated with children's self-regulation

BackgroundThe lack of early development of self-regulation (SR) skills in children can significantly impact their future success. Multiple theories emphasize the role of the environment on child development including SR skills, with income level influencing this relationship. The research used a framework that ties together theories on environmental design and establishes a relationship between the physical environment and a child's ability to self-regulate and manage stress. Limited research exists on addressing physical environmental factors in low-income households and how these factors affect children's self-regulation. PurposeThe purpose of this study is to identify physical environmental factors that can help children deal with stress. The study uses Shanker's self-regulation model and the ecological model to guide the study's data collection and analysis concerning the home environment in relation to child self-regulation from the perspective of caregivers. MethodThis research qualitatively explores affordances factors in the home physical environment in relation to child self-regulation. Data were collected through in-depth interviews and included participants from different income levels and diverse ethnicities. FindingsFifteen affordances factors in the home environment were derived from caregivers' perspectives. The key findings of the study include: (1) The more affordance aspects applied to the home physical design, the better the design is for the child's stress management; (2) Supportive environmental factors can be used to solve hindering effects generated by the environment.

Getting Help During Active Pain Crises in Sickle Cell Disease: Patient and Caregiver Perspectives in Canada

Plain Language Summary What is this summary about? This is a plain language summary of an article originally published in Patient Preference and Adherence. This study aimed to identify the notable symptoms and impacts of sickle cell disease from the point of view of individuals living with sickle cell disease and their caregivers. The study also sought to understand the factors involved in individuals living with sickle cell disease’ and caregivers’ decisions and preferences if and when they seek care during a pain crisis. This summary describes: the symptoms experienced by adolescents and adults living with sickle cell disease and their severity; the treatments they and their caregivers prefer to use when they are experiencing a pain crisis; and the factors that go into deciding when and whether individuals living with sickle cell disease and their caregivers should seek outside help -- to go to a hospital, for example - during a pain crisis. What were the results? Individuals living with sickle cell disease undergoing an acute pain crisis and their caregivers consider many factors when deciding whether to seek care at a medical facility. These include: The intensity of their symptoms If the facility has a treatment plan for them already in place If the facility has long wait times If the facility has an understanding and compassionate staff The individual's age and ability to manage their daily responsibilities Racial bias, shown in the actions and lack of empathy of Emergency Department staff toward individuals living with sickle cell disease, frequently factored into the individuals' and caregivers’ decision-making and hinders their ability to get the treatment needed during a pain crisis. What do the results mean? There is a need for a unified care team at medical facilities that treats all individuals living with sickle cell disease with the same high level of empathy and treatment quality and for a strong support system for individuals living with sickle cell disease outside of the hospital or clinic. This is an abstract of the Plain Language Summary of Publication article. View the full Plain Language Summary PDF of this article to read the full-text Link to original article here

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Barriers and facilitators to the uptake of electronic collection and use of patient-reported measures in routine care of older adults: a systematic review with qualitative evidence synthesis.

The aims of this systematic review were to (1) synthesize the available qualitative evidence on the barriers and facilitators influencing implementation of the electronic collection and use of patient-reported measures (PRMs) in older adults' care from various stakeholder perspectives and (2) map these factors to the digital technology implementation framework Non-adoption, Abandonment, challenges to the Scale-up, Spread, Sustainability (NASSS) and behavior change framework Capability, Opportunity, Motivation, Behaviour (COM-B). A search of MEDLINE, CINAHL Plus, and Web of Science databases from 1 January 2001 to 27 October 2021 was conducted and included English language qualitative studies exploring stakeholder perspectives on the electronic collection and use of PRMs in older adults' care. Two authors independently screened studies, conducted data extraction, quality appraisal using the Critical Appraisal Skills Programme (CASP), data coding, assessed confidence in review findings using Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative Research (GRADE CERQual), and mapped the findings to NASSS and COM-B. An inductive approach was used to synthesize findings describing the stakeholder perspectives of barriers and facilitators. Twenty-two studies were included from the 3368 records identified. Studies explored older adult, caregiver, healthcare professional, and administrative staff perspectives. Twenty nine of 34 review findings (85%) were graded as having high or moderate confidence. Key factors salient to older adults related to clinical conditions and socio-cultural factors, digital literacy, access to digital technology, and user interface. Factors salient to healthcare professionals related to resource availability to collect and use PRMs, and value of PRMs collection and use. Future efforts to implement electronic collection and use of PRMs in older adults' care should consider addressing the barriers, facilitators, and key theoretical domains identified in this review. Older adults are more likely to adopt electronic completion of PRMs when barriers associated with digital technology access, digital literacy, and user interface are addressed. Future research should explore the perspectives of other stakeholders, including those of organizational leaders, digital technology developers and implementation specialists, in various healthcare settings and explore factors influencing implementation of PREMs. CRD42022295894.

Clean intermittent catheterisation determinants and caregiver adherence in paediatric patients with spinal dysraphism and spinal cord injury in a paediatric spinal differences clinic: a mixed methods study protocol

IntroductionClean intermittent catheterisation (CIC) is the standard of care for treating neurogenic lower urinary tract dysfunction (NLUTD), the most common bladder dysfunction in children diagnosed with spinal dysraphism (SD) and...

It is child's play: Caregiver and playworker perspectives on a community park-based unstructured play program.

Unstructured play is characterized as play that is child initiated and determined, allowing children the freedom and flexibility to engage in activities, including taking risks, without adult intervention. However, playworkers and caregivers are important mediators of children's unstructured play. Studies have investigated playworker and caregiver perspectives regarding play, yet few have done so within the context of community based unstructured play interventions. Our qualitative study explored knowledge, attitudes and perspectives regarding play among playworkers ("play ambassadors") and caregivers exposed to a community based unstructured play intervention implemented in Calgary, Canada. The intervention aimed to encourage unstructured and risky play in local parks via loose parts. Between August and October 2020, ten caregivers and four play ambassadors completed individual semi-structured interviews. Using thematic analysis, we identified four overarching themes. The importance of play (theme 1) reflected play ambassador and caregiver perspectives about how unstructured and risky play promoted health and development and offered opportunities for enjoyment, exploration, and social interaction. Perceptions of the play environment (theme 2) reflected play ambassador and caregiver experiences of the play hubs including the role of loose parts in shaping play. Challenges and triumphs in promoting play (theme 3) reflected play ambassador experiences in facilitating play as well as interactions between caregivers and play ambassadors. Play hub impacts on the community (theme 4) reflected play ambassador and caregiver perspectives on the role of the play hubs in facilitating social interactions and community engagement. Play Ambassadors and caregivers shared common beliefs about the benefits of unstructured and risky play and about the play hubs affects on facilitating social interactions. Community based unstructured play interventions may support play and promote a sense of community.