Caregiver Preferences Research Articles

Codesign and evaluation of advanced therapeutic information resources for and with families of children with neurological conditions: a mixed methods cross-sectional study

ObjectiveParents and caregivers of children with neurological conditions express interest in new and developing treatments and trials; however, they have limited knowledge of, and access to, reliable information. This study...

Real-world assessment of caregiver preference and compliance to treatment with twice-weekly versus daily rivastigmine patches in Alzheimer's disease.

Adherence is critical in patients with Alzheimer's disease (AD) in order to achieve optimal benefit from therapy. However, patient compliance with the treatment remains a challenge. To evaluate, in a real-world clinical setting, caregiver preference and treatment compliance with twice-weekly versus daily transdermal rivastigmine patch in mild-to-moderate AD. 92 patients who had been treated with daily rivastigmine patch for at least six months prior to switching to twice-weekly patch were evaluated. The change in therapeutic regimen was decided by the treating physician in accordance with standard practice. Caregivers' satisfaction with daily rivastigmine patch was assessed at study entry. Caregiver's preference and satisfaction with twice-weekly patch as well as patient compliance were evaluated at weeks 12 and 24 using the Alzheimer's Disease Caregiver Preference Questionnaire. A significantly higher proportion of caregivers expressed a preference for the twice-weekly patch over the daily patch (p < 0.001), and this preference was found to be associated with ease of use (p < 0.001), ease of following the schedule (p < 0.001), and ease of compliance (p < 0.001). Furthermore, caregivers were more satisfied with the twice-weekly patch (p < 0.0001). At 24 weeks, patient compliance was significantly better with the twice-weekly patch than with the daily patch (p = 0.002). Caregiver burden significantly improved at the end of the treatment (p = 0.003). No serious adverse events were reported. The twice-weekly rivastigmine patch offers a convenient and straightforward dosing regimen for caregivers, with potential to enhance adherence with treatment in AD patients without causing serious adverse events.

NICU Caregiver Communication Preferences and Disparities by Primary Language: A Qualitative Study.

Effective communication between clinical providers and infant caregivers is vital to family-centered care and engagement in the NICU. Infants in the level IV NICU often have complex medical needs and prolonged lengths of stay, leading to challenges maintaining effective and consistent communication, particularly for families with a primary language other than English. The objective of this qualitative study is to determine the facilitators and barriers to effective communication among English- and Spanish-speaking caregivers in a level IV NICU. This phenomenology qualitative study consisted of interviews with English- or Spanish-speaking caregivers of infants admitted to a single-site level IV NICU for at least 7 days. Interviews were conducted using a semistructured interview guide that sought to understand the lived experience of parents communicating with providers. Themes from coded interview transcripts were identified using inductive thematic analysis. Nineteen interviews were completed in participants' primary language (English or Spanish), and 5 themes emerged from the analysis. For English- and Spanish-speaking caregivers, we discovered the importance of personal connection, the desire for receiving communication about changes directly from providers, and a strong desire for daily updates. For Spanish-speaking families, we found disparities in the use of communication-related technology and consistent communication from providers in their primary language. In this qualitative study, we identified caregiver preferences for communication from providers in a level IV NICU and demonstrated disparate experiences for Spanish-speaking caregivers. Future work should focus on developing interventions that address these identified barriers to communication.

Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity

To uncover the values and preferences of the caregivers for children with medical complexity using the test case of surgical treatment decision-making for pediatric neuromuscular scoliosis that will inform the future development of a decision support tool in this population. We conducted a qualitative study of semistructured interviews of English- and Spanish-speaking caregivers of children with neuromuscular scoliosis from 2 geographically distinct children's hospitals. We used purposive sampling of language and treatment options selected to capture diverse experiences. Analysis was on the basis of grounded theory with synthesized caregiver values and preferences themes. From 47 participants, we completed 41 interviews (9 in Spanish). Caregivers had a mean age of 43.2years, were mostly White (66%), and had children with a mean age of 15.6. In total, 64% chose surgery. The following values and preferences were important to many caregivers: reducing scoliosis-related pain, minimizing mobility limitations to optimize socioemotional quality of life, limiting the impact of comorbidities on overall quality of life, information provided by peer support, the uncertainty of outcomes due to underlying comorbidities, and the uncertainty related to the anticipated progression of their child's scoliosis curve. Caregivers experienced immense uncertainty related to treatment outcomes due to their child's comorbidities. Caregivers of children with medical complexity may benefit from decision support that includes both values clarification exercises to help caregivers identify what of the many possible values and preferences are important to them and novel methods to communicate uncertainty in the care of CMC.

Parent Perspectives on Parent-Mediated Intervention for Young Children With Down Syndrome.

Parent-mediated intervention (PMI) is a potentially scalable approach for tailored interventions in neurogenetic conditions like Down syndrome (DS). Because PMIs require ongoing parent engagement, they must be developed in alignment with the needs of intended users. The present study examined caregiver opinions and preferences to inform the development of syndrome-informed interventions for children with DS. Parents of children with DS (n = 34) participated in focus groups discussing PMI. Interviews were transcribed and a thematic analysis was applied to code the data. Three themes were identified: advantages of PMI, disadvantages of PMI and preferred features of PMI. To align with parent preferences, future PMIs for children with DS should require a brief time commitment, blend intervention activities into daily routines and include family members in activities. Findings have implications for developing novel interventions to support early development in children with DS and other neurogenetic conditions.

'You're Just Thinking About Going Home': Exploring Person-Centred Medication Communication With Older Patients at Hospital Discharge.

The hospital discharge process poses significant safety risks for older patients due to complexities in communication and coordination among stakeholders, leading to potential drug-related problems post-discharge. Adopting a person-centred care (PCC) approach in medication communication by healthcare professionals (HCPs) is crucial to ensure positive health outcomes. This study aimed to explore the practice of PCC in medication communication between older patients and HCPs during the hospital discharge process. We conducted a qualitative study using non-participatory direct observations of patient-HCP consultations during hospital discharge, followed by semi-structured interviews with observed patients and, when applicable, their informal caregivers. Data collection occurred from October 2020 to May 2021 at two Swedish hospitals. We gathered data using an observational form and audio-recorded all consultations and interviews. The data were analysed thematically using the systematic text condensation method. Twenty patients were included (median age: 81 years [range: 65-94]; 9 female) in observations and 13 of them participated in interviews. Two patients were accompanied by an informal caregiver during the interviews. Three main themes were identified: (1) The impact of traditional authoritarian structures, depicts power dynamics between patients and their HCPs, showing how traditional structures influence the practice of PCC in medication communication during hospital discharge; (2) Consultation timing and mode not on patients' terms, describes suboptimal times and settings for consultations, along with the use of complex language that hinders effective communication; and (3) Discrepancy in expectations of self-care ability, illustrates a mismatch between the self-care guidance provided by HCPs during hospital discharge and the actual needs and preferences of patients and informal caregivers. Medication communication between older patients and HCPs during hospital discharge is frequently inconsistent with the practice of PCC. Not only must HCPs improve their communication strategies, but patients and their informal caregivers should also be better prepared for discharge communication and encouraged to participate in their care. This involvement would give them relevant knowledge and tailor communication to their individual needs, preventing problems in managing their medications after discharge. An advisory group of six patients and/or informal caregiver contributors provided input on the study design, edited the consent forms, and helped develop the interview guide.

Former Primary Caregivers of Patients With Glioblastoma Multiforme Evaluate the PATH (Preparedness Assessment for the Transition Home) Instrument.

To evaluate whether Preparedness Assessment for the Transition Home (PATH), a validated instrument assessing gaps in caregiver commitment and capacity to care for a patient with a disabling condition, would be helpful to identify gaps in preparing primary caregivers of patients with glioblastoma multiforme (GBM). A descriptive survey design with quantitative and qualitative data. Former primary caregivers of patients with GBM were invited to complete a 17-question online survey during February and March 2023. Former caregivers, each having completed their caregiver journeys, are able to offer a unique perspective across the illness trajectory. Participants reviewed a copy of the PATH instrument and (a) responded to questions rating PATH helpfulness at each stage of the illness trajectory and (b) provided open-ended feedback on the instrument. One hundred seventeen of the 124 participants reported the PATH instrument would be helpful across all stages of the illness trajectory. While there were no statistically significant differences across the illness phases, response trends indicated using the PATH instrument earlier in the illness trajectory would have been more helpful to them as caregivers. Qualitative thematic analysis feedback indicated the most significant gap caregivers faced was education on the effects of the illness and treatment. It is vitally important to prepare and support caregivers. A validated instrument can identify unmet needs and inform care decisions. Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. PATH has the potential to inform healthcare professionals to develop customised care plans including education, resources and support for caregivers and patients with life-threatening illness. Study adheres to the STROBE reporting method. Prior to deploying the survey to study participants, in addition to testing by study collaborators (authors), the survey was tested and feedback was received from graduate students and from administrators of the private Facebook group where the survey was promoted to study participants.

Evaluation of a novel pediatric asthma inhalation drug delivery device: a focus on patient accessibility, ease of use, dosage feedback, and future directions

Objective Pediatric asthma management faces challenges in medication delivery through oral inhalation devices. While dry powder inhalers (DPIs) are increasingly prescribed to children, many do not receive their prescribed dosage due to insufficient inspiratory flow. This study investigates the utilization of metered-dose inhalers (MDIs) and DPIs among pediatric patients with asthma, focusing on medication delivery challenges. Methods Two survey cohorts comprising a total of 42 caregivers of patients with asthma were conducted. Modifications in the second cohort addressed neutral Likert scale responses to obtain more nuanced feedback. Results Caregivers expressed concerns about uncertainties in their child’s ability to use both MDIs and DPIs and challenges in ensuring proper dosage. Notably, 42% of caregivers in the second cohort rated their child’s inhaler usage as unable, indicating a significant worry about the efficacy of current delivery methods. Additionally, 50% of caregivers across both cohorts expressed uncertainties about their child receiving the full medication dosage. In response to identified challenges with DPIs, an adaptor device emerged as a potential solution, with caregivers exhibiting positive perceptions post-exposure. Features prioritized for the device include ease of use and assurance of dose delivery. Conclusions The study highlights caregiver preferences and the need for innovations to ensure effective medication delivery for pediatric asthma patients. A DPI adaptor device shows promise in addressing technical issues and alleviating caregiver concerns, ultimately contributing to more effective asthma management. Future research should refine these devices based on caregiver feedback to meet the evolving needs of the pediatric asthma population.

Comparison of Caregiver and General Population Preferences for Dependency-Related Health States.

We assess whether the preferences regarding dependency-related health states as stated by informal caregivers are aligned with those expressed by the general population. The preferences of a sample of 139 Spanish informal caregivers of dependent patients are compared with those obtained via a sample of 312 persons, also from the Spanish general population. We assess 24 dependency states extracted from the DEP-6D using the time trade-off method. Descriptive statistics and regression methods are used to explore differences between the two samples. Mean difference tests establish that, for all but one of the 24 states, there are no significant differences between the samples. The estimated mean values ranged from - 0.64 to 0.60 for the caregiver sample and from - 0.60 to 0.65 for the general population sample, with a correlation of 0.96. On average, the classification of states as better or worse than dead matched in both samples (except for one state). Regression models also show that sample type does not have a significant average impact. After we introduce interaction effects, only the most severe level of two dimensions, cognitive problems and housework, result in significant differences-with the caregiver sample reporting higher values for the former, and lower values for the latter. Caregivers and the general population exhibit quite similar preferences concerning dependency-related health states. This suggests that the results of cost-utility analyses, and the resource allocation decisions based on them, would likewise not be significantly affected by the preferences used to generate the weighting algorithm.

"They forget that I'm a human being"-ward round communication with older patients living with frailty and informal caregivers: a qualitative study.

Skilful communication prompts quality patient care. Informal caregivers occupy a crucial role when caring for hospitalised older patients living with frailty. However, skilful communication with both patients and informal caregivers during ward rounds has not been studied. Thus, we aimed to explore communication preferences of patients and informal caregivers during ward rounds. We conducted semi-structured interviews with hospitalized patients and informal caregivers until information redundancy occurred. We used inductive coding of the transcribed interviews followed by a reflexive thematic analysis. The study included 15 patients and 15 informal caregivers. Patients had a median age of 85years (range 75-100years) and seven patients were females. Informal caregivers' median age were 45years (range 38-80years) and 13 were females. Three themes were generated: (1) building relationships and conveying information, (2) alleviating informal caregiver strain and (3) sharing the decision-making process. Themes highlighted the importance of collaborative and empathetic approaches in healthcare interactions, emphasizing interpersonal communication skills, such as fostering professional relationships. The interviews unveiled informal caregiver burden stemming from disempowerment during hospital discharge process and managing mistrust within the healthcare system. The shared decision-making process should address patients' and informal caregivers' needs and circumstances. Communication preferences of a population of older patients living with frailty and informal caregivers during ward rounds encompass interpersonal communication, demonstrating ample time, and being seen as a human being. Informal caregivers value being included in the decision-making process. Skilful communication includes for doctors to recognize informal caregivers' narratives and burdens.

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.

Family Caregivers of Persons with Bipolar Disorder: Caregiver Demographics and Need and Preference for Intervention

The unpredictability of bipolar disorder is highly distressing for family caregivers, who differ in their needs and preferences for stress-reducing or educational interventions. Applying Ryan and Sawin’s model, this study examined associations between caregiver demographics (age, gender, and race) as contextual factors and caregiver needs and preferences for three interventions as process factors within a preliminary descriptive analysis of 306 family caregivers from a randomized clinical trial. Caregiver needs for education about bipolar disorder, biofeedback, and Resourcefulness Training© were determined by established cut scores on validated measures of bipolar knowledge, heart rate variability, and resourcefulness. Frequencies for need and preference for intervention were compared by caregiver age, gender, and race. Discrepancies between caregiver need and preference for interventions were analyzed. Non-White caregivers showed greater need for education (X 2=33.68, p < 0.001). Middle-aged caregivers showed greatest need for biofeedback (X 2=19.58, p < 0.001). Need for Resourcefulness Training© was similar across age, gender, and race. We found 58% needed biofeedback, 34% education, and 18% Resourcefulness Training©; 46% of those in the preference group chose Resourcefulness Training©. Further caregiver intervention research should consider the effect of caregiver needs and preferences on their health. The findings support the essentiality of assessing caregiver demographics, needs, and preferences before implementing interventions.

Understanding caregiver preferences and technology access to plan improvement of pediatric emergency department discharge instructions.

Approximately 95% of children treated in emergency departments (EDs) in Alberta, Canada, are discharged home. Discharge teaching is an opportunity to provide caregivers with the information that they need to manage their child's condition at home and ensure appropriate follow-up. Our ED lacked a standard discharge instruction process. In preparation for local quality improvement, we sought to understand caregiver preferences regarding discharge instructions by assessing the preferred format, need for translated resources, and ability to effectively access electronic information using a Quick Response (QR) code. This project was completed at a tertiary pediatric ED in Calgary, Alberta in July and August 2021. Caregivers of pediatric patients were invited to complete a survey. Families requiring an interpreter were not eligible; however, this was recorded to estimate translation needs. Survey questions addressed preference of discharge instruction modality (verbal, printed, electronic), primary language spoken at home, ability to use English resources, and ability to use QR codes. Descriptive analyses were performed, and preferences were compared. Of 117 caregivers approached, 104 completed the survey (89%). Caregivers had a strong preference for receiving written discharge instructions, with 98% desiring either electronic or printed resources in addition to verbal instructions. There was a similar likelihood of using printed (75%) versus electronic (79%) resources (p = 0.5). Three percent of families were unable to complete the survey due to a language barrier. Of the 104 participants, 19% noted that their primary language at home was not English but that they would still use English discharge instructions. Eighty percent of participants were able to successfully use the QR code. Caregivers had a strong preference for receiving written discharge instructions, with electronic or paper formats preferred equally. Translated resources will be important for some families. QR codes may be an effective tool for distributing electronic resources to most but not all families.

Interdisciplinary assessment and treatment of paediatric drooling: two decades of experience by the Nijmegen saliva control team reflected in a stepwise algorithm

Anterior and posterior drooling are prevalent comorbidities in children with neurodevelopmental disabilities. Considering the heterogeneity of the patient population and the multifactorial aetiology of drooling, an interdisciplinary and individualised treatment approach is indispensable. However, no tool for stepwise decision-making in the treatment of paediatric drooling has been developed previously. Within the Radboudumc Amalia Children’s Hospital, care for children with anterior and/or posterior drooling secondary to neurodevelopmental disabilities is coordinated by a saliva control team with healthcare professionals from six disciplines. In alignment with international literature, published guidelines, and evidence gained from two decades of experience and research by our team, this paper proposes an algorithm reflecting the assessment and treatment approach applied in our clinic. First, directions are provided to decide on the necessity of saliva control treatment, taking type of drooling, the child’s age, and the severity and impact of drooling into account. Second, the algorithm offers guidance on the choice between available treatment options, highlighting the importance of accounting for child characteristics and child and caregiver preferences in clinical (shared) decision-making.Conclusions: With this algorithm, we aim to emphasise the importance of repeated stepwise decision-making in the assessment and treatment of drooling in children during their childhood, encouraging healthcare professionals to apply a holistic approach.What is Known:• Children with anterior or posterior drooling secondary to neurodevelopmental disabilities comprise a heterogeneous group, necessitating an individualised treatment approach.• No stepwise decision-making tool is available for the treatment of paediatric drooling.What is New:• Deciding on the necessity of saliva control treatment should be a conscious process, based on type of drooling, age, and drooling severity and impact.• Type of drooling, age, cognition, oral motor skills, self-awareness, posture, diagnosis, and child/caregiver preferences need to be considered to decide on the optimal treatment.

Spanish-Speaking Caregiver Preferences for Social Determinants of Health Screening.

Equitable social determinants of health (SDOH) screening has been recommended by the Centers for Medicare & Medicaid Services and the Joint Commission; however, little is known about Spanish-speaking caregiver preferences on how they would like to be screened. We conducted a cross-sectional study at 3 pediatric clinics (October-December 2019). Caregivers completed (in English or Spanish) an SDOH screening preferences survey. Three hundred eighty-two of 443 caregivers approached (response rate = 86.2%) completed the survey. Most were female, preferred Spanish, and completed only high school. Spanish-speaking caregivers had greater odds of preferring verbal SDOH screening (odds ratio: 4.1; 95% confidence interval, 1.8-9.2) than English-speaking caregivers. Verbal SDOH screening should be a consideration in families who speak Spanish. Future studies should utilize qualitative methods to further explore Spanish-speaking caregiver preferences for SDOH screening.

Trends in hospice utilization and place of death preferences in multiple myeloma-related deaths from 2003 to 2020: Analysis of CDC Wonder database.

e24039 Background: Multiple myeloma (MM) is an incurable hematological malignancy of plasma cells with high disease-related morbidity and mortality. Modern treatment has revolutionized the care of MM patients. However, a significant proportion of patients will eventually succumb to the disease. Place of Death (POD) is an important determinant of patient and caregiver preference, access to home-based supportive care, and cost of caregiving at EOL. We evaluate trends in POD for patients and hospice utilization with MM in the U.S. from 2003 to 2020. Methods: We analyzed data using the Centers for Disease Control and Prevention WONDER (Wide-Ranging Online Data for Epidemiologic Research) database. The data for deaths due to MM was pooled using the International Classification of Diseases-10th Revision code C 90.0. We included adult patients (age &gt; 18 years), diagnosed with MM during 2003-2020. The demographic data was obtained to calculate descriptive statistics using age, gender, place of death, census region, and utilization of hospice mortality. Annual percentage change (APC) in mortality was calculated using the joinpoint model. Results: There were 205,472 deaths in MM patients in the era 2003-2020, of which 88,245 (42.95%) deaths were in the decedent home and hospice facility (H&amp;H) and107,275 (52.12%) deaths were reported in medical facilities and nursing homes. There was a significant increase in the trend of H&amp;H [29% to 58%, average annual percentage (AAPC) 4.6404, p &lt; 0.001] and a decline in medical facility/nursing home (M&amp;N) deaths [64.9% to 37.7%, AAPC-2.1059, p &lt; 0.001]. When stratified by census regions, all regions in the US depicted significantly increased utilization of H&amp;H (p &lt; 0.001), with the highest H&amp;H utilization in the West region (CENS-R4) of 47.97%, while the highest M&amp;N mortality of 60.4% was observed in North-East region. There is a significant increase in H&amp;H utilization reported in the age group 45-64 years (AAPC 3.544) and age group 65+ (AAPC 5.0277) with p &lt; 0.0001 for both groups. The younger patients (Age &lt; 45) tend to use hospice less, but the number of deaths in the group was small. Furthermore, we saw increased H&amp;H utilization in both genders, with female AAPC at 4.0951 and male AAPC at 5.1393, p &lt; 0.0001 With regards to race, the highest H&amp;H utilization was seen in whites (44.66%), then American Indian or Alaska Native (40.12%), Asian or Pacific Islander (36.76%), and African American (36.05%). However, the trend analysis from 2003-2020 depicts the highest AAPC change in AAPI (8.8409). Conclusions: Over the past two decades, there has been a trend in increased utilization of hospice facilities in end-of-life care among MM patients. However, there is still opportunities to expand its utility especially in the North-East and among African American patients to reduce the psychological and cost of end-of-life care.

Perceptions of Dementia and Dementia Care Among African Immigrants in Minnesota: Insights From Community Conversations.

This qualitative descriptive study explored the perceptions of dementia, dementia care, and caregiving within the African immigrant community. Six community conversations (focus groups) were held with 24 participants. Three conversations were led by project advisory board members and utilized a 12-question conversation guide. The recorded conversations were transcribed and analyzed using thematic analysis. Of the 24 African immigrants who participated, 52% were 55-75 years old, 67% identified as female, and 39% were married or cohabitating. Twenty percent were currently providing care to a relative with dementia and 40% had provided care to a relative with dementia in the past. Four themes were identified. These included (1) attitudes toward mental health, illnesses, and poor health, (2) community attitudes toward dementia, and dementia caregiving, (3) barriers to dementia care and caregiving, and (4) current dementia care resources in the African immigrant community. The findings show that African immigrant cultural beliefs significantly shape dementia care and caregiving attitudes, preferences, and behavioral practices. African immigrants' cultural backgrounds influence (or have the potential to influence) timely access and engagement in dementia care. And, depending on how deeply held these cultural beliefs are, they could affect dementia care and caregiving both positively and negatively. With the rapidly growing immigrant older adult population, there is a need for systemic strategies to facilitate affordable and culturally responsive dementia care for African immigrants and other minoritized older adults.

How do Patients With Advanced Cancer and Family Caregivers Accommodate One Another in Decision-Making? Findings From a Qualitative Study in Specialist Palliative Care.

Patients with advanced cancer commonly involve family caregivers in decision-making for palliative care. However, how patients with advanced cancer and family caregivers accommodate each other in decision-making is unclear. A qualitative study in advanced cancer was conducted with 14 patients and 19 family caregivers recruited from two hospices comprising a large regional specialist palliative care service in Ireland. Data comprised semi-structured interviews with participants. The data were analyzed using grounded theory coding procedures. Most patients preferred to make care decisions with their family caregiver or at least involve their family caregiver in care discussions. Patients engaged in shared decision-making because they felt they benefited from caregiver support. Patients accommodated family caregiver preferences out of concern for that person and because they trusted them. Family caregivers accommodated patient preferences because they wanted to honor the patient's wishes and felt a responsibility to protect patient autonomy when they had a close relationship with the patient. Prior conflict between the patient and family caregiver was a barrier to mutual accommodation. Although concealment was used as a mechanism to support accommodation between the patient and family caregiver, both sought to communicate openly with other family members to negate potential conflict between each other and the wider family. Patients with advanced cancer and family caregivers in specialist palliative care support one another by accommodating each other's preferences for patient care. Patients with advanced cancer and family caregivers accommodate one another in decision-making out of a sense of responsibility to one another.

‘Counselling is not just providing information’: perceptions of caregivers and stakeholders on the design of nutrition and health counselling interventions for families with young children in rural Kenya

BackgroundGlobally, a fifth of the children continue to face chronic undernutrition with a majority of them situated in the Low- and Middle-Income Countries (LMIC). The rising numbers are attributed to aggravating factors like limited nutrition knowledge, poor feeding practices, seasonal food insecurity, and diseases. Interventions targeting behaviour change may reduce the devastating nutrition situation of children in the LMICs.ObjectiveFor the co-design of a Behaviour Change Communication (BCC) intervention for young children in rural Kenya, we aimed to identify the experiences, barriers, facilitators, and preferences of caregivers and stakeholders regarding nutrition and health counselling.DesignWe employed a qualitative study design and used a semi-structured interview guide. The in-depth interviews were recorded, transcribed, and analysed using content analysis, facilitated by the software NVivo.SettingHealth and Demographic Surveillance System (HDSS) area in Siaya County, rural Kenya.ParticipantsWe interviewed 30 caregivers of children between 6 and 23 months of age and 29 local stakeholders with experience in implementing nutrition projects in Kenya.ResultsNutrition and health counselling (NHC) was usually conducted in hospital settings with groups of mothers. Barriers to counselling were long queues and delays, long distances and high travel costs, the inapplicability of the counselling content, lack of spousal support, and a high domestic workload. Facilitators included the trust of caregivers in Community Health Volunteers (CHVs) and counselling services offered free of charge. Preferences comprised (1) delivering of counselling by CHVs, (2) offering individual and group counselling, (3) targeting male and female caregivers.ConclusionThere is a disconnect between the caregivers’ preferences and the services currently offered. Among these families, a successful BCC strategy that employs nutrition and health counselling should apply a community-based communication channel through trusted CHVs, addressing male and female caregivers, and comprising group and individual sessions.

Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study

BackgroundPaediatric heart failure poses life-long, burdensome symptoms for the health care system and families. Diagnosis and discharge are stressful and anxiety-provoking for caregivers. They face uncertainty about their child’s health and become responsible for administering complex care in the home. Little is known about this topic. Our study aimed to explore caregiver learning and experiences caring for a child with heart failure to design and implement a knowledge translation tool. MethodsQualitative description guided our study. Recruitment occurred in a tertiary cardiac centre in Edmonton, Alberta, Canada. Data collection and analysis occurred concurrently until data redundancy was achieved. Inductive conventional content analysis was used to develop categories. ResultsEleven interviews identified 2 main categories. One relates to how traumatic life experiences impact learning (eg, new diverse ways of learning, stress steepens the learning curve, and learning heart failure takes time). The other relates to families’ new life reality after diagnosis (eg, emotional distress and the new reality). ConclusionsThis study provides insight into caregivers’ learning needs and experiences caring for a child with heart failure. Caregivers describe how the trauma of having their child diagnosed with heart failure negatively impacts their learning capabilities and way of life going forward. Caregiver learning experiences and preferences for digital platforms is also highlighted. This knowledge will inform the design of an online educational tool about pediatric heart failure for caregiver audiences. This tool will empower and improve caregiver decision-making related to their child’s daily heart failure management, with the goal to positively impact clincal outcomes, lessen stress and anxiety.