Parental Caregiving Research Articles

A Qualitative Assessment of Adolescent Symptom Report and Caregiver Concordance Following Outpatient Surgery

Objectives: Limited data exist regarding recovery from surgery from the adolescent’s perspective, or data regarding concordance between adolescent and caregiver symptom report preventing appreciation of adolescent needs and hindering the provision of appropriate care. Methods: We conducted semi-structured interviews with adolescents ages 12-17 and a parent caregiver two weeks following a variety of outpatient elective surgeries about recovery symptoms. We used latent manifest content analysis to analyze interview data. Caregiver-adolescent response concordance was assessed using Cohen’s Kappa (κ). Results: Interviews were conducted with 31 adolescent-caregiver pairs (median age: 15y). Fifty-eight percent of adolescents and 84% of caregivers were female; 71% of adolescents were white. Twenty-three percent of children reported severe pain, some of which was not expected given the surgery. Severe pain was associated with nausea (71%, P= 0.002), pain-related sleep disturbance (86%, P= 0.007), and severe anxiety (43%, P= 0.008). Fatigue was also common (58%), but not associated with severe pain (P = 0.484) or sleep disturbance (P = 0.577). Thirty-nine percent reported anxiety; 32% experienced anger/frustration. Caregiver-adolescent concordance was only substantial for severe pain (κ = 0.71) and anger/frustration (κ= 0.67). Caregiver report also often included psychological symptoms not reported by their children, with qualitative evidence supporting caregiver accuracy. Discussion: Adolescents may experience significant physical symptoms such as pain and fatigue, even after minor surgeries. Fatigue symptoms may be unrelated to pain or sleep. Caregiver report of adolescent psychological symptoms may be necessary to gain a complete understanding of those symptoms in this population.

Preventing unintentional injuries in children: the parents’ beliefs matters (CHILD Vigilance)

Abstract The CHILD Vigilance project is a European study supported by the Injury Prevention & Safety Promotion Section of the European Public Health Association (EUPHA INJ) and aims at assessing parenting knowledge and attitudes that are relevant to supervision and risk taking in children. For children the majority of these injuries occur in or around the home when their safety is the responsibility of a parent or other caregiver. The study aims contribute to the epidemiological knowledge of injuries through the study of the perceptions of parents and caregivers of children and adolescents. A descriptive, observational, cross-sectional study was developed under the CHILD Vigilance project, developed at European level within the scope of the Injury Prevention & Safety Promotion Section of the European Public Health Association. The information was collected by survey, from parents’ associations and schools in the EU countries represented in the EUPHA INJ Section. A total of 916 valid responses were obtained, involving 1229 children (51,4% male; mean age 7,8 years). Falls were perceived as the most common type of unintentional injuries in pre-schoolers and school-age children (47,8% in Greece; 63,5% in Portugal; 74,8% in Lithuania). However it was found differences in these countries as to the most common type of injury in adolescents, pointing out road traffic crashes (41.2% in Greece vs 39.5% in Portugal) and poisonings in Lithuania (38,1%). Some differences were also observed between these countries as to the most common causes of death. In Greece and Lithuania diseases were reported the main cause in the pre-schoolers (62,5%; 35,1%) and in primary education (55,1%; 29,7%), being injuries pointed as the most frequent cause only in the oldest. The study emphasizes the need to invest in the identification of appropriate determinants of child unintentional injuries and harmonised injury outcomes across global initiatives. Key messages • The lack of data regarding to parents’ knowledge on injury prevention involving children highlight the need to conduct this type of studies. • The need for adequate epidemiological data on the burden of child injuries and validated tools to accurately measure injuries.

Associations between genotype, phenotype and behaviours measured by the Rett syndrome behaviour questionnaire in Rett syndrome

IntroductionRett syndrome (RTT) is a rare neurodevelopmental disorder with developmental impairments, comorbidities, and abnormal behaviours such as hand stereotypies and emotional features. The Rett Syndrome Behaviour Questionnaire (RSBQ) was developed to describe the behavioural and emotional features of RTT. Little is known how RSBQ scores are associated with genetic and clinical characteristics in RTT. This study investigated relationships between genotype, age, walking, hand function, sleep, and RSBQ total and subscale scores in RTT.MethodsThis is a cross-sectional analysis of data collected in the Australian Rett Syndrome Database and the International Rett Syndrome Phenotype Database. Parent caregivers completed the RSBQ and Sleep Disturbance Scale for Children [subscales for disorders of initiating and maintaining sleep (DIMS), disorders of excessive somnolence (DOES)], and provided information on age, variant type, functional abilities (mobility, hand function), seizure frequency and gastrointestinal problems. Associations between the RSBQ scores and the independent variables were modelled using linear regression.ResultsData were available for 365 individuals with RTT [median (range) age 17.8 (2.9–51.9) years, 2 males]. Compared to adults, 2- to 12-year-old children had higher mean Total, Night-time Behaviour and Fear/Anxiety scores. Compared to individuals with a C-terminal deletion, individuals with the p.Arg255* variant had higher mean Total and Night-time Behaviours scores, whereas the p.Arg294* variant had higher mean Mood scores. Individuals with intermediate mobility and hand function abilities had a higher mean Total score. Total RSBQ and subscale scores were similar across categories for seizures, constipation, and reflux, but were higher with abnormal DIMS and abnormal DOES scores.ConclusionExcept for associations with sleep, the RSBQ measures the behavioural phenotype rather than clinical severity in RTT, as traditionally conceptualised in terms of functional abilities and comorbidities. When designing clinical trials, the RSBQ needs to be complemented by other outcome measures to assess specific core functions and associated comorbidities in RTT.

17 Caregiver experiences with enteral feeding transitions

Abstract Background Children with medical complexity (CMC) are an expanding group within paediatrics due to advances in medical care, often including a dependence on medical technology. Issues such as oromotor swallowing dysfunction and feeding difficulties are common in this population. As a result, many CMC require the use of enteral tubes for feeding. While evidence does support improved nutritional status with the use of enteral feeding tubes, there is limited literature discussing how these interventions impact other patient centered outcomes, such as quality of life for the child, changes in parental caregiving, and logistical implications for the family. A comprehensive understanding of the positive and negative outcomes associated with selection and transition between different feeding tube options is needed. Objectives To describe and explore the caregiver and patient experience with different feeding tubes, with a focus on the experience of transitioning between different enteral feeding modalities. Design/Methods We conducted semi-structured interviews with 16 participants, including both caregivers and two patients. Reflexive thematic analysis was utilized to identify preliminary themes from interviews. Themes were further refined by the study team. Results The themes identified through interviews included: A) the pros and cons with each type of enteral feeding modality, B) the emotional impacts on patients and caregivers, C) logistical impacts on day-to-day life for families, and D) the experience of transitioning between feeding tubes. Globally, participants spoke positively about their transition from nasogastric feeding to either gastrostomy or gastrojejunal feeding tubes. Caregivers also felt that they were integral to the decision-making process, though some felt in hindsight the transition process was too slow. Conclusion This study highlights both the complexity and heterogeneity of the caregiver experience with different feeding tubes. It found that most families consistently viewed their transitions with enteral feeding tubes positively, as this was seen as a significant milestone in helping their child both nutritionally and with their quality of life. Finally, further research could be done to explore experiences with gastrojejunal and jejunal feeding, as this patient population is not well elucidated within the literature.

Experiences and the psychosocial situation of parental caregivers of children with spinal muscular atrophy against the background of new treatment options: a qualitative interview study

BackgroundSpinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and a shortened life expectancy. Parents as primary caregivers are often physically and psychologically burdened. In recent years, new and promising treatment options have been approved, but it remains unclear if they have an impact on the psychosocial situation of affected families.ObjectivesThe aim of this study was to explore the views and experiences of parents as informal caregivers of children with SMA in the course of the disease against the background of new treatment options (Spinraza® or Zolgensma®).MethodsWe conducted qualitative interviews with 27 parents of children with SMA treated with Spinraza® and Zolgensma® from April to September 2020. The analysis was done using thematic analysis and reported according to the COREQ criteria.ResultsThe data analysis resulted in three main themes: a) caregiver burden and negative consequences for families, b) resources and protective aspects, c) psychosocial care needs. The results are discussed against the background of new treatment options and previous models of supportive care needs. Parental caregivers of affected children face multiple burdens in different stages of the child’s disease progression.ConclusionAlthough new treatment options for SMA showed observable effects for most parents, the main caregiver burden and reported symptoms were attributable to the overburdening care tasks. To unburden families, more screening for unmet needs, family-centered help services, professional caregivers, childcare, and sufficient financial support are needed.

Feasibility and Acceptability of a Family-Based Telehealth Intervention for Families Impacted by the Child Welfare System: Formative Mixed Methods Evaluation.

Despite elevated rates of trauma exposure, substance misuse, mental health problems, and suicide, systems-impacted teens and their caregivers have limited access to empirically supported behavioral health services. Family-based interventions are the most effective for improving mental health, education, substance use, and delinquency outcomes, yet the familial and placement disruption that occurs during child welfare involvement can interfere with the delivery of family-based interventions. To address this gap in access to services, we adapted an in-person, empirically supported, family-based affect management intervention using a trauma-informed lens to be delivered via telehealth to families impacted by the child welfare system (Family Telehealth Project). We describe the intervention adaptation process and an open trial to evaluate its feasibility, acceptability, and impact. Adaptations to the in-person, family-based affect management intervention were conducted iteratively with input from youth, caregivers, and systems partners. Through focus groups and collaborative meetings with systems partners, a caregiver-only version of the intervention was also developed. An open trial of the intervention was conducted to assess family perspectives of its acceptability and feasibility and inform further refinements prior to a larger-scale evaluation. Participants included English-speaking families involved in the child welfare system in the past 12 months with teens (aged 12-18 years). Caregivers were eligible to participate either individually (caregivers of origin, kinship caregivers, or foster parents; n=7) or with their teen (caregiver of origin only; n=6 dyads). Participants completed session feedback forms and surveys at pretreatment, posttreatment, and 3-month posttreatment time points. Qualitative exit interviews were conducted with a subset of participants (12/19, 63%) to further understand their experiences with the intervention. Session attendance was high, and both caregivers and teens reported high acceptability of clinicians and sessions on feedback forms. Families were comfortable with video technology, with very few (<5%) sessions having reported technology problems. Thematic analysis of exit interview transcripts indicated that families used effective communication and affect management skills taught during the intervention. Regarding challenges and barriers, some caregiver-only participants expressed a desire to have their teen also participate in the intervention. All interview participants reported that they would recommend the intervention to others and perceptions of the intervention were overwhelmingly positive. Quantitative surveys revealed differential responses to the intervention regarding affect management and communication. An open trial of the Family Telehealth Project, a skills-based telehealth intervention for families impacted by the child welfare system, suggests high levels of intervention feasibility and acceptability. Participants noted improvements in areas often hindered by the impacts of trauma and family separation: communication and affect management. Perceptions of the intervention were positive overall for both teens and caregivers. The Family Telehealth Project shows promise in addressing the gaps in behavioral health access for systems-impacted families. ClinicalTrials.gov NCT04488523; https://clinicaltrials.gov/study/NCT04488523.

The Effectiveness of a Parent Empowerment Intervention for Caregivers of Children with Cystic Fibrosis: A Randomized Controlled Trial

ABSTRACT This paper focused on the effectiveness of a parent empowerment intervention based on nursing education (PEINE). This study examined whether the intervention improved the quality of life of children with cystic fibrosis (CF) and improved their caregivers learn about the disease and develop problem-solving and coping skills. This randomized-controlled trial used a pretest-posttest parallel-group research design. The sample consisted of 48 parents (caregivers) of children with CF. Participants were randomly assigned to an intervention (n = 24) and a control group (n = 24). The intervention group received PEINE and standard care and treatment for ten weeks. The control group received standard care and treatment. Data were collected using a Disease Information Survey (DIS), the Ways of Coping Inventory (WCI), the Problem-Solving Inventory (PSI), and the Cystic Fibrosis Questionnaire (CFQ-R). After the intervention, the intervention group DIS scores (d: 1,627 [CI: 0.934,2.305], had more correct answers than the control group. Nursing interventions were effective (p < .001). There was no significant difference in the mean pretest-posttest PSI scores (d: 0.378 [CI: −0.221-0.972], posttest WCI scores (d: 0.239 [CI:-0.356-0.831]) between the intervention and control groups (p>.05). There was a significant difference in the mean posttest CFQ-R scores between the intervention and control groups (d: 1.363 [CI: l.698, 2.015]);(p < .001). PEINE increased the intervention group participants develop disease-management skills. However, the increase in their PSI and WCI scores was statistically insignificant. PEINE also increased the quality of life of children with CF. Parents of children followed in pediatric pulmonary diseases participated in the study. Parents were informed during outpatient clinic visits. After the first meeting, the children and parents who voluntarily agreed to participate in the research were contacted by phone. The outpatient nurse assisted in communicating with children and parents.

¡Iniciando! la Adultez, a bilingual treatment program for Latino, autistic young adults and their Spanish-speaking parents: a pilot study

Objectives Latino young adults with autism spectrum disorder (ASD) face many challenges during the transition to adulthood, particularly regarding executive functioning (EF) and mental health symptom management. Latinos with ASD are particularly underserved, with existing supports often neglecting these critical areas. The study aims to evaluate a culturally and linguistically tailored intervention to better support Latino young adults by improving their adaptive functioning to enhance social outcomes and quality of life. Methods The culturally adapted and translated intervention, called ¡Iniciando! la Adultez, is a 12-week therapy program based on an evidence-based treatment (Launching! to Adulthood). The present study involved young adults with ASD (n = 26) and their Spanish-speaking parents (n = 38). Participants completed measures at baseline, mid-treatment, and post-treatment. Results The ¡Iniciando! la Adultez program led to significant improvements in social domains (e.g. cognition, motivation), and improvements in adaptive functioning, EF, quality of life, self-efficacy, and emotion regulation. Parental stress and caregiver burden, however, did not show significant changes. Conclusions Tailored, holistic interventions like ¡Iniciando! la Adultez are useful for supporting autistic young adults. These programs effectively address critical gaps in EF and mental health management, especially for Latino individuals, promoting better outcomes during the transition to adulthood.

A Qualitative Descriptive Study Exploring the Systemic Challenges of Caring for Children With Medical Complexity at Home

IntroductionThe purpose of this study is to explore challenges within the home care system encountered by parental caregivers of children with medical complexity in Massachusetts. MethodA qualitative descriptive study was completed with 11 parental caregivers interviewed. ResultsUsing conventional content analysis of transcripts, three themes emerged: (1) lack of discharge preparedness causes emotional distress, (2) care becomes increasingly complex creating new unanticipated challenges, and (3) psychological toll of parents assuming provider role. DiscussionNavigating a variety of complex systemic challenges with minimal preparation or support contributes to an overall feeling of parental caregiver burnout. Additionally, mental health supports for parental caregivers are lacking, further exacerbating the negative impact of these challenges. Future work should focus on research, advocacy, and system reform that ensures parental caregivers receive necessary supports to care for children within a sustainable and supportive home care model. Nurses across the profession are in unique position to facilitate this change.

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

614P Burden on parent caregivers of children with a muscle disease: a qualitative study

Home environment and cigarette quitting behaviors among rural Black/African American women caregivers.

This cross-sectional study described the home tobacco environment and its association with quitting behaviors among Black/African American women caregivers who smoke cigarettes and live in rural, low-resourced areas. A baseline survey was administered to caregivers enrolled in a randomized trial from 2020 to 2022 (n = 147). Logistic regressions identified the associations between the independent variables (home cigarette smoking bans, caregiver restrictions on child cigarette access, number of people in the home who smoked around the caregiver during the past week, and who smoked in the caregiver's home) and three outcome variables: lifetime quit attempt, past-year quit attempt and use of evidence-based cessation strategies during a last quit attempt. Caregivers have multiple generations of family smoking in their homes, including caregivers' children/nieces/nephews (21%) and their parents (36%). Young family members smoking in the home was related to the caregiver's parents (p = .046) and grandparents (p = .03) smoking in the home. The number of people smoking around the caregiver was associated with lower odds of a lifetime quit attempt (odds ratio, OR = 0.63, confidence interval, CI [0.47, 0.85]; adjusted OR = 0.61, CI [0.45, 0.84]). No independent variables were significantly related to past-year quit attempts in unadjusted or adjusted models. Caregivers with young family members smoking in the home were more likely to have used evidence-based cessation strategies versus those without young family smoking (OR = 16.96, CI [1.01, 283.68]). Black/African women caregivers who smoke and live in rural, low-resourced areas are exposed to numerous family members smoking in their homes which may affect quitting. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Can cessation of caregiving for parents relieve family caregivers' psychological distress? A longitudinal study using 17-wave nationwide survey data in Japan.

Informal caregiving of older parents adversely affects the mental health of family caregivers. However, the psychological effects of caregiving cessation and the trajectories of these effects have rarely been examined in Japan. This study addresses this gap. Based on a 17-wave nationwide population-based survey in Japan, we analyzed longitudinal data from 8,280 individuals aged 50-59 years in 2005 who started caring for their older parents in 2006 or later and ceased caregiving by 2021. We identified the timings of caregiving onset and cessation and examined the trajectory of psychological distress (PD), defined as a Kessler score ≥ 5 on the 6-item Kessler scale (range 0-24). Linear mixed models were used to assess the trajectory of PD that evolved after caregiving cessation over the subsequent three years. After adjusting for covariates, the probability of PD decreased by 5.6 percentage points (from 40.8%; 95% confidence interval [CI], 4.1-7.0) for female caregivers and by 1.9 percentage points (from 31.7%; 95% CI, 0.3-3.5) for male caregivers at caregiving cessation, remaining stable in subsequent years. For women, higher PD risks related to co-residence with a care recipient diminished quickly upon cessation of caregiving, while the unfavorable impacts of no social activity, extended duration of care, and long-hour daily care persisted in subsequent years. For male caregivers, the impact was generally more limited. These results suggest that changes in mental health following caregiving cessation warrant serious consideration when developing support programs for former family caregivers.

Associations Among Family Strengths, Depression and Life Satisfaction Between Disabled Children and Their Parent Caregivers: An Actor–Partner Interdependence Mediation Model

ABSTRACTAimTo explore the actor–partner effect and mediating role of depression on family strength and life satisfaction among children with disabilities and their parent–caregiver dyads.DesignA cross‐sectional study using secondary data collected from the 2020 (third) Korea Disability and Life Dynamics Panel.MethodsThis study included 434 Korean dyads of children with disabilities and their parent caregivers. A dyadic analysis was performed using the actor–partner interdependence mediation model.ResultsThe findings showed significant indirect actor effects of family strength on life satisfaction through depression for children with disabilities and their parent caregivers. The direct partner effects of one's family strengths on a partner's life satisfaction were statistically significant only for children. Additionally, significant indirect partner effects were observed in the association between parents' family strengths and children's life satisfaction through their own and their children's depression. The findings indicated that the life satisfaction of children with disabilities was more likely to be affected by their parent caregivers' perceived family strengths and depression.ConclusionIt is significant for health professionals to acknowledge the mediating and cross‐over pathways linking family strengths to life satisfaction through depression and, thus, focus on family‐based strategies to enhance life satisfaction among children with disabilities and their parent caregivers.Implications for the Profession and/or Patient CareThis study highlights the need for family‐oriented mental health interventions and education to promote life satisfaction among children with disabilities and their parent caregivers.ImpactBasic data were provided for establishing efficient healthcare education and counselling protocols and integrated family intervention programmes that can contribute to improving life satisfaction through the reduction of depression by strengthening the family strengths of disabled children–parent caregivers dyads. In future, studies should explore dyadic interdependence among children with disabilities and their parent caregivers.Reporting MethodSTROBE guidelines were followed for this study.Patient or Public ContributionNo public or patient contribution was required for this study.

“Our Children Are Dead”: Past and Anticipated Adversity Shaping Caregiving and Cultural Reproduction among Banyamulenge Refugee Families in Rwanda

It is well known that experiences of extreme adversity strongly impact caregiving and family dynamics. In this study, we explore how caregiving is shaped by experiences of war and displacement among a community experiencing protracted, ongoing conflict and displacement, namely, Congolese Banyamulenge refugee families in Rwanda. The findings are based on six months of ethnographic team research with Banyamulenge refugee families living in semi-urban southern Rwanda. Among the caregivers, including people who arrived several years ago and others who have lived in Rwanda for over two decades, we found a strong longing for home and past cattle-herding life. We also found that caregivers emphasized the transmission of “survival tactics” as well as Banyamulenge identity and culture. We argue that these caregiving objectives and practices speak to the community’s experiences of material and existential losses in the past, as well as those anticipated in the unknown future. Second, parental caregiving efforts appear to lead to increased intergenerational dissonance, with children wishing to integrate into their host community. While this finding appears in line with much of the migration literature about intergenerational family relationships and conflict, we find that children’s orientation is not only informed by the host environment but also stems from a desire to relieve their parents’ suffering from loss and help them invest in more optimistic futures. Finally, while our findings suggest profound changes in social and cultural reproduction in the long term, we argue for caution, as ongoing changes in war dynamics in DR Congo may inform shifts in ideas on belonging among the children. The findings provide new insights for understanding how caregiving may be affected by war and displacement while effecting change in war-affected, displaced communities.

Virtual histology based on 3D X-ray microscopy imaging for non-destructive age-at-death estimation of incinerated teeth from the Tophet of Motya (Sicily, 6th century BC)

The reconstruction of infant biological history and mortality profiles provides biocultural insights into adulthood morbidity, maternal health, parental caregiving practices, and social dynamics. However, interpreting biological data from cremated infant remains in archaeological contexts can be challenging due to their often poor preservation and potential biases. Tophets, sanctuaries for distinct burial of cremated infant remains present in several Phoenician-Punic colonies in the Mediterranean area, offer an ideal case study. This study presents the first virtual histology performed in X-ray Microscopy-based imaging (XRM) on a sample of crowns of cremated deciduous teeth from the Tophet of Motya (Sicily, 6th century BC). The observation of the Neonatal Line (NL) in enamel tissue offers important informations on the community demographic profile, age-at-death classes and life-histories of the buried individuals. Results are consistent with previous studies on other human remains found in the main Tophets in Mediterranean basin and highlight the importance of using non-invasive techniques to collect and analyse data that are useful for the interpretation of newborns and infants burial practices.

Psychological Well-Being of Caregivers of Parents with Mental Illness: An Exploratory Study

The current study was conducted to explore the psychological well-being of caregivers having a parent with mental illness. The purposive sampling technique was used to conduct the study. A sample of 12 (8 women and 4 men) adults aged 18-40 years having parents with mental illness, such as schizophrenia, depression, and compulsive disorders were selected from the psychiatry ward of one of the government hospitals in Faisalabad, Pakistan. A focus group discussion was conducted through the trained facilitator. Thematic analysis was used to examine the data. Five major themes, namely significant impact on life, responsibilities, societal pressure, attention towards religion, personal, social and family dynamics, and nine sub themes, namely psychological impact, overall health affected, influence on academic performance, balancing caregiving and personal roles, social integration, religious strength, social life circumstances, family situation, emotions and feelings were extracted. The findings highlight the impact of parents’ mental illness on the well-being of adult caregivers in Pakistani context. Furthermore, findings may also help clinicians in tailoring the interventions accordingly to the context of the current study in order to enhance and improve caregivers' well-being.

Family Caregivers of Cancer Patients: Burdens and Support Preferences of Partner, Parent and Adult-Child Caregivers.

The aim of this study is to (1) identify similarities and differences in psychosocial burdens and support needs experienced by parent, partner and adult-child caregivers and (2) identify support needs of family caregivers regarding peer support programs. Semi-structured interviews (n=30) were conducted with family caregivers of cancer patients. Interviews were transcribed and analyzed by inductive content analysis to identify themes. Ten categories of burden were identified for all three groups of caregivers. Partners emphasized the time burden through caregiving, parents and adult-child caregivers accentuated the emotional burden. All caregivers wished for peer-to-peer exchange which will provide the feeling not to be alone, to share emotions and to prepare for what will come next. Preferences for matching with peers with similar prognosis for their sick relative and similar living conditions were found. Partner, parent and adult-child caregivers describe similar burdens of caregiving. They wish for peer support programs that allow them to share their experiences with persons who understand their situation. Therefore, caregivers desire a good match with peers to enhance the positive outcome of peer exchange.

Cystic fibrosis foundation position paper: Redefining the CF care model.

Specialized care is provided to people with cystic fibrosis (pwCF) by interdisciplinary teams nested within the CF Foundation's accredited care center network. This network allows for standardization of the care model, implementation of clinical care guidelines, efficient communication, and outcomes reporting. Recent developments have impacted this care model. Increased access to CFTR modulator therapies has improved overall health for many, although not all pwCF. The COVID-19 pandemic resulted in a rapid adoption of telemedicine and remote monitoring to ensure continuity of CF care. A collaboration of care providers, pwCF, and parent caregivers reevaluated key aspects of the current care model and considered potential modifications based on a widening range of needs. Available evidence was used to evaluate components of routine clinical practice and identify potential adaptations to care. The review included identification of patient characteristics warranting intensive monitoring, while embracing patient-centric care, and emphasizing the integration of telemedicine and at-home health technologies. Despite the changing landscape, the importance of the relationship between pwCF, their support system, and the care team was confirmed as a timeless and foundational aspect of the care model. Shared decision making, partnership, and coproduced care plans between pwCF and their CF care teams guide the best adaptations of the care model to support individual priorities and wellbeing. As health care advances and pwCF age, further research is needed to understand the impact of the care model on long-term health outcomes and to identify best practices that support pwCF to live longer healthier lives.

The experiences of adult children caring for a parent with Korsakoff’s syndrome

Background: Korsakoff’s syndrome (KS) is a debilitating psychoneurological disorder that can occur in adults with alcohol use disorder (AUD). People with KS experience a sudden onset of symptoms including confabulation, anterograde and retrograde amnesias, apathy, issues with vision and gait, and lack of insight. Frequently an adult child of the parent with alcohol-induced KS becomes the caregiver, regardless of the status or quality of the relationship with their parent. While there is a rich literature base in the areas of adult children of parents with AUD and caregiving, there are no studies that have explored the experiences of adult children caring for a parent with alcohol-induced KS. This study aimed to explore the experiences of adult children who provide care for a parent or parental figure suffering from alcohol-induced Korsakoff syndrome (KS). Method: This study used a generic qualitative approach with thematic analysis using both in person and web-based video interview methods and field notes to address this gap in the literature. Eight individuals participated in the study, men (n=2) and women (n=6), with participants ranging in age from 31 to 43 years (average age 37 years). Results: Five themes emerged: addiction and the adult child, experiencing caregiver burden, experiencing a variety of emotions, professional healthcare experiences, and observations of symptoms. These themes emerged over seven anchor events in their caregiving experiences: interactions with their parent pre-diagnosis, parent’s medical emergency, hospitalization, diagnosis, housing, legal, and financial. Conclusion: The results provide a foundation for future research in the areas of KS, caregiving, and adult children of parents with AUD. They also provide a basis to inform the development of interventions with this population and demonstrate a need for more awareness of KS among healthcare professionals.

Should Mother Baby Units be renamed Parent Baby Units? A critical reflection on gendered language in perinatal psychiatry.

Mother Baby Units provide mental health care to parents experiencing severe perinatal mental illness. The majority of admitted parents identify as mothers and are the birthing parent and primary caregiver for their infants. However, there is increasing recognition of transgender and gender diverse people who birth and parent infants, as well as awareness of the mental health needs of fathers, people in same-sex relationships, and other non-birthing parents. As such there are moves to use ungendered language for health services including renaming these units as Parent Baby Units. This paper explores this debate, critically reflecting on emergent tensions. Movements towards, and resistance against, changing language in perinatal mental health care are attempts to ensure the visibility of groups within mainstream services. Whether to adopt new terminology is a complex question. But ensuring MBUs meet the needs of people who require them should remain paramount.