BACKGROUND: Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies.
METHODS: Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes.
RESULTS: The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child\'s ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful.
CONCLUSIONS: Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.

UNASSIGNED: This study explored the treatment-related, financial and psychological experiences of caregivers during cancer treatment of their children in South Africa\'s (SA) public and private sectors.
UNASSIGNED: In this exploratory study, three focus groups were conducted with caregivers of children undergoing cancer treatment in SA\'s public healthcare sector. A fourth small focus group with two parents in the private sector was conducted online. A mixed-methods approach was employed using a combination of thematic analysis and grounded theory.
UNASSIGNED: Of the 20 public sector caregivers, many expressed frustration at the number of visits to primary healthcare clinics before being referred. Caregivers had difficulties coping with and accepting the diagnosis, alongside managing continued care for the child and other children at home. Support received by family and community members was varied. Financial strain was an important concern. The two private sector parents indicated greater levels of support and no financial hardship, but expressed similar levels of emotional stress.
UNASSIGNED: These caregiver experiences indicate that improvements are urgently needed in the recognition of childhood cancer symptoms at primary healthcare level in SA. They also highlight a need for increased financial support from government through social grants, travel allowances and nutritional support.

OBJECTIVE: To support informal caregivers, a simple assessment tool capturing the multidimensional nature of caregiving experiences, including negative and positive aspects, is required. We developed a short form of the Japanese version of the Caregiver Reaction Assessment (CRA-J), a multidimensional assessment scale for caregiver experiences.
METHODS: The internet survey involved 934 Japanese informal caregivers aged 20-79 years (mean age = 58.8 years; 50.2% women) who completed questionnaires, including the CRA-J 18 items (CRA-J-18), consisting of five domains, such as impacts on schedule and finances and positive experiences of caregiving. A 10-item short version of the CRA-J (CRA-J-10; 0-50 points), which was prepared by selecting the two items with the highest factor loadings from each domain, was tested for model fit by confirmatory factor analysis (CFA) and was analyzed for correlations with the CRA-J-18, Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Scale (PACS), Patient Health Questionnaire-9 (PHQ-9), and WHO-Five Well-Being Index (WHO-5). The area under the curve (AUC) in the receiver operating characteristic was evaluated as discriminability for depressive symptoms (PHQ-9 ≥ 10 points).
RESULTS: The CFA indicated a good model fit in the CRA-J-10. The CRA-J-10 correlated well with the CRA-J-18 and other variables (CRA-J-18, r = 0.970; ZBI, r = 0.747; PACS, r = -0.467; PHQ-9, r = 0.582; WHO-5, r = -0.588) and showed good discriminant performance for the presence of depressive symptoms (AUC = 0.793, 95% confidence interval = 0.762-0.823).
CONCLUSIONS: The CRA-J-10 allows a simple assessment of caregiver experiences, helping support informal caregivers. Geriatr Gerontol Int 2024; 24: 290-296.

UNASSIGNED: Immunizations are successful, cost-effective interventions for the control of infectious diseases and preventing mortality. Lockdown restrictions during the COVID-19 pandemic had adverse effects on child-health including access to immunizations. Our study aimed to document immunization status, describe caregiver experiences around accessing immunizations during the COVID-19 pandemic and identify any significant factors associated with immunization status.
UNASSIGNED: Caregivers, with children between the ages of 10 to 33 months, attending Tygerberg Hospital Paediatric Department were invited to complete an anonymous survey from 15th September-15th December 2022. Data was captured using a REDCap questionnaire and analysed using Stata Version 17.
UNASSIGNED: 171 caregivers completed the survey. Immunizations were up to date in 81%. Most (155, 88%) agreed it was important to immunize their child. A third of caregivers (55) felt it was unsafe to attend the clinic and 37% (62) agreed it was difficult to attend. Caregivers receiving a social grant (p = 0.023) or who felt safe attending clinic (p = 0.053) were more likely to be up to date with immunizations. Three-quarters (128, 78%) were aware of recommendations to continue immunization. These caregivers were more likely to think it was important to immunize on time (p = 0.003) and to receive family encouragement (p = 0.001). Caregivers were more likely to attend clinic if they felt it was important to vaccinate on time (p < 0.001) or felt safe attending clinic (p = 0.036).
UNASSIGNED: Immunization rates were higher than expected but below global targets. Although caregivers feel immunizations are important, unknowns still instilled fear of attending clinics. Social factors such as family support and social grants improve vaccine seeking behaviour.

OBJECTIVE: This study aimed to determine the experiences of primary caregivers of patients with tracheostomies on the tracheostomy suctioning procedure.
METHODS: This is a semi-structured qualitative study of 11 primary caregivers of patients with tracheostomies in one university hospital in a province in northwest Turkey. Data were collected using a semi-structured interview technique with the primary caregivers of the patients and interviews were audio-recorded. The content of the audio recordings obtained during each interview was evaluated by the researchers using the content analysis method. The data were categorized, coded, and analyzed by creating themes and sub-themes.
RESULTS: The experiences of primary caregivers with tracheostomy suctioning before discharge were classified under three themes and 11 sub-themes. The study\'s main themes were emotional reactions, information needs, and caring responsibility. Caregivers showed either positive or negative emotions when performed tracheostomy suctioning on their patients. Insufficient information on the patient care and recovery process were mostly emphasized topic by caregivers. Such that they express the knowledge deficiency on tracheostomy suctioning and counseling provided either by nurses/physicians. Thus compete with difficulties ends up with feelings of pressure and avoidance of caring responsibility.
CONCLUSIONS: Caregivers lack of knowledge and poor skills on tracheostomy suctioning ends up with fear, anxiety, and obstacles on patient caring. Implementing individualized education, supporting patients and their caregivers on tracheostomy suctioning, and following up on caregivers\' abilities are valuable interventions.

Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child\'s needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care.

BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known.
OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers.
METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers\' experiences and perceived impacts of participation.
RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging.
CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.

UNASSIGNED: Caregivers share cancer experiences with patients, but little is known about their own experiences in the end-of-life phase, the most difficult phase in the caregiving journey.
UNASSIGNED: To describe the experiences of caregivers of cancer patients admitted to a hospice in South Africa.
UNASSIGNED: A qualitative design was used; 22 (n=22) participants were purposively selected and in-depth interviews were conducted. Analysis of the data was by qualitative content analysis.
UNASSIGNED: A total of three themes arose from the data: emotional responses towards the caregiver role, personal cost of caregiving and spiritual issues relating to caregiving.
UNASSIGNED: Caring for cancer patients during the last phase of life was not easy. Responsibilities overwhelmed the participants and they were emotionally exhausted. They lacked knowledge of how to care and experienced a heavy financial burden. Despite the challenges that they faced, faith and religious practices served as a coping mechanism and kept some going.

BACKGROUND: The COVID-19 pandemic\'s emergence necessitated that clinic/hospital-based rehabilitation is replaced or substituted by other modes. Using telecommunication devices was found a convenient alternative.
OBJECTIVE: Present study explored the telerehabilitation experiences of the parents of children with developmental disabilities (CDD).
METHODS: The study was conducted among the service users of a not-for-profit NGO located in Kerala. Parents of children with one or more developmental disabilities formed the population of the present study. The present study was a cross-sectional exploratory survey.
METHODS: A total of 205 parents took part in the study using a brief open-ended survey. The majority of the participants were females (65%).
METHODS: The sociodemographic data were analyzed using frequency and percentage. The qualitative data were analyzed using thematic analysis.
RESULTS: Overall, the study found that parents experienced more challenges in telerehabilitation compared to face-to-face interventions. Perceived challenges included externalizing problems, reduced effectiveness, logistical issues, multiple disabilities, and the child\'s lack of interest in gadgets. Perceived advantages included the child\'s liking for the device and increased availability of time.
CONCLUSIONS: In short, the study throws light on the various challenges experienced by parents in implementing telerehabilitation for their CDD. The findings strongly recommend fine-tuning telerehabilitation programs to meet these challenges to provide optimal care to our children with special needs.

OBJECTIVE: Explore the self-care experiences of patients with multiple chronic conditions (MCCs) and caregivers\' contributions to patient self-care during COVID-19 pandemic.
METHODS: A descriptive qualitative design was used. The COREQ checklist was used for study reporting.
METHODS: Individual semi-structured interviews were used to collect data from patients with MCCs and caregivers selected from the dataset of an ongoing longitudinal study. Data analysis was performed through deductive thematic analysis. The middle-range theory of self-care of chronic illness, which entails the three dimensions of self-care maintenance, monitoring and management, was used as a theoretical framework to guide data collection and analysis.
RESULTS: A total of 16 patients and 25 caregivers were interviewed from May to June 2020. The participants were mainly women, with a mean age for patients of 76.25 years and caregivers of 45.76 years; the caregivers were mainly the patients\' children (72%). During the pandemic, some patients reported remaining unchanged in their self-care maintenance, monitoring and management behaviours, others intensified their behaviours, and others decreased them. Caregivers played an important role in protecting patients from the risk of contagion COVID-19 and in ensuring patients\' self-care of chronic diseases through direct and indirect interventions.
CONCLUSIONS: Critical events can modify the self-care experiences of chronically ill patients and caregivers\' contributions, leading to maintenance, increase or decrease of self-care and contributions to self-care behaviours.
CONCLUSIONS: Patients with MCCs and their caregivers can react in different ways in their performances of self-care and contribution to patients\' self-care behaviours when ordinary daily life is disrupted; therefore, nurses should assess such performances during critical events to identify the individuals at risk of reduced self-care and promote the most suitable healthcare services (e.g. eHealth) to implement individualised interventions.