Caregiver Questions Research Articles

PremieFeed: Investigating Preterm Infant Feeding Behaviors, Growth, and Caregiver Experiences in the First Weeks After NICU Discharge.

This study aimed to longitudinally investigate the preterm infant feeding regimens, feeding behaviors, effect on infant growth, and caregiver perceptions and experiences with feeding in the first 4 weeks following hospital discharge. Preterm infants face high nutritional risk due to their underdeveloped gastrointestinal systems and feeding coordination. Caregivers of preterm infants were recruited to participate in a weekly telephone survey for the first 4 weeks following the infant's hospital discharge. Responses for infant feeding behaviors and caregiver experiences were scored on a 3-point Likert scale. Growth and feeding data were collected from the infant's first neonatal intensive care unit (NICU) developmental follow-up visit. Twenty-four caregivers completed the study. Changes in feeding regimens were common (8/24 infants; 33%), with the percentage of infants receiving any human milk feedings decreasing from 70% at hospital discharge to 54% at 4 weeks post-discharge. Poor infant feeding skills were weakly associated with poor caregiver feeding experiences, and 46% of caregivers reported contacting their healthcare provider with feeding-related questions. Thirty-eight percent of infants required nutritional intervention at NICU developmental follow-up visit. Infants who received fortified feedings during the first 4 weeks after hospital discharge grew an average of 2.5 g/day faster than infants who did not receive fortified feedings. The postdischarge period for preterm infants is characterized by feeding regimen changes, a decrease in human milk use, and caregiver questions about feeding. Future studies should further investigate the period after hospital discharge to enable better feeding support for preterm infants and their caregivers.

Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments

ObjectiveOpen communication during appointments exemplifies person-centered care. The current study characterized questions asked by persons with neurologic illnesses and their caregivers—and clinicians' responses to those questions—during initial outpatient palliative care appointments. MethodsWe coded type (direct or indirect) and topic of questions stated by patients and their caregivers in audio recordings from 38 initial outpatient palliative care appointments. We also coded the completeness and quality features of clinicians' responses. ResultsPatients and caregivers stated 556 total questions; most were direct questions (79.7%) and primarily about symptoms, treatment, and lifestyle issues. Clinicians responded to more than 90% of all questions. Responses to both question types were similar in completeness and quality, but clinicians more frequently offered support in response to direct questions and gave recommendations in response to indirect questions. ConclusionPersons with neurologic illnesses and their caregivers use different question types to obtain information about symptoms and treatment during initial palliative care appointments. Results may guide clinician training and patient education for optimizing information exchange in palliative care. InnovationThis study is the first to explore patient and caregiver use of indirect questions in neuropalliative care appointments and the quality of clinicians' responses to those questions.

Implementing Standardized Post-Intensive Care Syndrome Education by an Advanced Practice Registered Nurse in the Pediatric Intensive Care Unit

Implementing Standardized Post-Intensive Care Syndrome Education by an Advanced Practice Registered Nurse in the Pediatric Intensive Care Unit

Palliative Care Clinicians’ Perspectives of an Integrated Caregiver Patient-Portal System in Oncology

Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver. This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing. We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns. The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability. The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team. This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare. This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.

Pharmacy intervention to facilitate transparent opioid-risk and safety communication

ObjectiveThis paper seeks to explore the impact of training, a handout, and patients’ questions on pharmacists’ comfort and satisfaction in discussing opioid risks with pediatric caregivers. MethodsIn a mixed methods intervention study in a children’s hospital outpatient pharmacy, 2 practicing pharmacists and 1 student pharmacist counseled 100 caregivers using their standard practices (not telling a caregiver the pain medicine was an opioid or informing them about opioid risks). After the training, the same 2 pharmacists and another student pharmacist counseled 97 caregivers about opioid-risk by assessing their beliefs, explaining that the medication was an “opioid,” and integrating a safety handout into the consult. The pharmacists completed short surveys after each consult in both phases and were interviewed. Qualitative data were coded using NVivo version 12 (QSR International). Descriptive statistics and multivariate regression analyses were performed on the data collected from the surveys. ResultsDuring the preintervention phase, opioid risks were not discussed; no pharmacist described the pain medication as an opioid. The pharmacists reported that they needed training and resources to assist opioid counseling. In the postintervention phase, the pharmacists indicated that the medication was an opioid in all consults. The pharmacists’ comfort increased significantly over time and decreased with caregivers’ concerns at posttest (adjusted R2 = 0.40). The pharmacists’ satisfaction increased with time and caregiver questions (adjusted R2 = 0.15). The pharmacists reported that the training and handout facilitated opioid-risk and safety discussions. ConclusionThe intervention positively affected pharmacists’ comfort and satisfaction. It should be evaluated in different settings and populations.

Experiences in Alzheimer’s disease: What do stakeholders post on the Internet?

Alzheimer’s disease (AD) is a neurodegenerative condition that is chronic, progressive and terminal across an interval of approximately five to ten years from the time of diagnosis. Disease management in AD and other illnesses has been conceptualized in a number of ways, including the Health Co-Inquiry approach (a cooperative endeavor that activates stakeholders, regards all stakeholder views, uses evidence-based practice, and strives for integrated care). With growth of Internet use, Health Co-Inquiry may occur online as stakeholders in chronic disease management search for and give information and support. The current study is a first look at the online posts of all AD stakeholders. Our goal is to shed light on their experiences by characterizing the themes in their posts. A Bifurcated Method was used with quantitization of information through a web-crawling program in order to corroborate or refute the findings from an inductive, thematic (qualitative) analysis. Results indicate that AD stakeholders utilize the Internet for: information, assistance, emotional support or relief, and advice about decision-making and behaviour challenges. Persons with AD posted little compared to caregivers and were prone to report subjective cognitive impairment (SCI) and ask for help regarding diagnosis. Caregivers were apt to divulge personal stories, ask whether they should deceive a person with AD, and request information about coping or note that posting online was a coping mechanism. Providers’, agencies’ and companies’ posts were likely to give information and offer technical advice, answer specific caregiver questions, and offer paid services/clinical trials. As a first study of all AD stakeholder online narratives, data indicate that more than half of sites and posts are dedicated to the concerns of caregivers and persons with AD, indicating that they are engaging in some aspects of Health Co-Inquiry online.

Question-response-evaluation sequences in the home interactions of a bilingual child with autism spectrum disorder.

Prior research has described the prevalence and utility of questions in children's language learning environment. However, there has been little empirical investigation of the interaction sequences that ensue following caregiver questions. Understanding these interactions may be especially important for children with autism spectrum disorder (ASD), who may have difficulty engaging in reciprocal interactions. Question-response-evaluation sequences (QRE) are a particular type of interaction sequence launched by questions that have been examined primarily in classroom contexts. Less research has been devoted to understanding how caregivers and children with ASD leverage this interactional format in the context of home interactions. We focus on QRE sequences within interactions between a 5-year-old bilingual child with ASD and his parents. In these sequences, the adult poses known-answer questions, the child responds and the adult evaluates the response. QRE sequences are primarily structured by the questioner (i.e., the parents in our context), and we examine the interactive work done by parents to initiate, maintain and close these sequences. We also examine the child's contributions to these sequences. We applied conversation analysis (CA) to video recordings of home routines, such as play, book-reading and schoolwork. Videos were fully transcribed using CA conventions, and 55 QRE segments were isolated from the data corpus for further analysis. Q-word questions (i.e., where, what, why, when, how questions) were the most prevalent question format, and repetition of the child's response was the most prevalent form of evaluation. We found that QRE sequences were embedded within a variety of action trajectories that extend beyond pedagogical functions. These included repairing a prior utterance, extending collaborative play routines and engaging in topically connected labelling rituals. QRE sequences appeared to strike a balance in terms of the level of constraint they placed on the child's contributions to interactions, and the affordances they provide for participating in and progressing through interactions. This study can help clinicians understand the types of interactions that can be pursued with QRE sequences in their work with children with ASD. The findings may also aid intervention researchers' efforts to leverage caregivers' existing strengths for adapting their interactional overtures to maximize children's engagement. Finally, this study provides an illustration of caregiver-child interactions in a population that is currently under-represented in the literature.

Associations between perceived information needs and anxiety/depressive symptoms among cancer caregivers: A cross-sectional study

Purpose: Caregivers to cancer patients often experience information needs. This study investigates the associations between perceived information needs and anxiety/depressive symptoms among caregivers to cancer patients.Design: Cross-sectional study using self-completed questionnaires.Sample: A total of 128 caregivers to cancer patients who participated in a rehabilitation stay at REHPA, The Danish Knowledge Center for Rehabilitation and Palliative Care, from April 2016 to March 2017.Methods: The caregivers completed a questionnaire assessing both information needs and anxiety/depressive symptoms. We used ordinal logistic regressions to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for the associations between seven information needs and anxiety/depressive symptoms. The reference group was caregivers with no perceived information needs.Findings: The combined score of perceived information needs was associated with higher odds of anxiety (OR = 3.86 per unit increase, 95% CI 1.85–8.03) and depressive symptoms (OR = 3.83 per unit increase, 95% CI 1.15–12.75). For the individual items, our results showed higher odds of anxiety symptoms for caregivers with perceived information needs regarding (1) the disease and its course, for both little need for information (OR = 3.62, 95% CI 1.39–9.43) and substantial need for information (OR = 4.57, 95% CI 1.40–14.93); however, for substantial information needs, an interaction with gender was found showing higher odds for men (OR = 28.90, 95% CI 4.46–187.41), but no significant association for women. Also, substantial need for information regarding the disease and its course were associated with higher odds of depressive symptoms (OR = 11.43, 95% CI 1.18–111.21). Furthermore, we found higher odds of anxiety symptoms for caregivers who perceived information needs regarding (2) which symptoms and adverse effects to be aware of; (3) how to help and support a cancer patient; (4) expected mental responses in a person with cancer; (5) how to find information on the internet, and (6) where to direct caregiver questions and/or concerns after patient discharge.Conclusions: Among caregivers to cancer patients, perceived needs regarding the disease and its course were associated with higher odds of anxiety and depressive symptoms. Furthermore, several other information needs were associated with anxiety symptoms.Implications for Psychosocial Providers or Policy: To prevent unnecessary anxiety and depressive symptoms among cancer caregivers, health care professionals should be aware of the importance of informing caregivers regarding the disease and its course. Other issues to address concerning anxiety symptoms are information regarding which symptoms and adverse effects to be aware of; how to help and support a cancer patient; expected mental responses in a person with cancer; how to find information on the internet; and where to direct caregiver questions and/or concerns after patient discharge.

Family Caregiving for Cancer Patients: the State of the Literature and a Direction for Research to Link the Informal and Formal Care Systems to Improve Quality and Outcomes.

Based on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented. Articles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care. Research on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients' stage of disease and goals of treatment. Oncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients' conditions.

Deciphering the Signal From the Noise: Caregivers' Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites.

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional–facilitated communication and cancer information strategies.

Childhood Cancer in an LMIC: Navigating the Wilderness

Background and context: When a child has cancer, the entire family is affected. Parents and caregivers lose work days while caring for the child. Many parents blame themselves and wonder if some action or decision of theirs contributed to; or caused the cancer. In addition, and especially for families falling within the low socioeconomic demographic groups, there may be poor understanding of the treatment process and expectations from treatment. Aim: To assess the most common challenges or concerns faced by parents, family members, or caregivers of a child living with cancer in Nigeria. Strategy/Tactics: A series of 10 focus group sessions were held with different groups of parents, family members, or other caregivers of children being treated for cancer at 2 teaching hospitals in Nigeria. Groups consisted of a minimum 8, and maximum of 12 participants in addition to a moderator. At the beginning of every session, participants were asked to submit 2 most pressing questions. Open-ended questions were also used with every attendee given a turn to give their answer. Participants were also given a chance to ask questions or bring up issues they had difficulty with. The single most prevalent concern raised in every focus group was lack of information or understanding. The 2 most common questions were: 1. What is cancer? 2. Why does my child have cancer? Program/Policy process: Data from the sessions were painstakingly compiled. The questions and concerns the attendee raised; and the degree of understanding they had regarding the diagnosis, treatment process, and expectations bring and after treatment. This data were collated and a team of experts including oncologists, nurses, and health workers in cancer were brought together to answer the questions. A compilation was made and a plan to disseminate the information was formulated. This culminated in the publishing of a free childhood cancer handbook; the first of its kind in Nigeria; with plans to translate the handbook into the common colloquial and vernacular languages in Nigeria. Outcomes: Participants of the focus groups were given a handbook, including some whose child had passed on since the sessions were held. 29% of the original participants were unreachable or declined the handbook. They were assessed to see if the handbook provided information that could have eased their cancer journey. 91% of assessed participants responded that having the handbook at diagnosis would have significantly increased their level of information and made the cancer journey easier. [Figure: see text][Figure: see text] The most appreciated information in the handbook was contact details of an organization dedicated to supporting them financially to pay treatment fees. What was learned: Many Nigerian families go through the entire childhood cancer journey completely in the dark. No dedicated information source on child cancer exists in Nigeria. Many parent and caregiver questions remain unanswered, and concerns remain unresolved.[Figure: see text]

Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers.

BackgroundIn the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers.ObjectiveThe primary aims of this study were to determine (1) the feasibility of innovating peer support group work delivered through social media with friendsourcing, (2) whether the intervention provides an acceptable method for AD caregivers to obtain support, and (3) whether caregiver outcomes were affected by the intervention. A Facebook app provided support to AD caregivers through collecting friendsourced answers to caregiver questions from participants’ social networks. The study’s secondary aim was to descriptively compare friendsourced answers versus crowdsourced answers.MethodsWe recruited AD caregivers online to participate in a 6-week-long asynchronous, online, closed group on Facebook, where caregivers received support through moderator prompts, group member interactions, and friendsourced answers to caregiver questions. We surveyed and interviewed participants before and after the online group to assess their needs, views on technology, and experience with the intervention. Caregiver questions were pushed automatically to the participants’ Facebook News Feed, allowing participants’ Facebook friends to see and post answers to the caregiver questions (Friendsourced answers). Of these caregiver questions, 2 were pushed to crowdsource workers through the Amazon Mechanical Turk platform. We descriptively compared characteristics of these crowdsourced answers with the friendsourced answers.ResultsIn total, 6 AD caregivers completed the initial online survey and semistructured telephone interview. Of these, 4 AD caregivers agreed to participate in the online Facebook closed group activity portion of the study. Friendsourcing and crowdsourcing answers to caregiver questions had similar rates of acceptability as rated by content experts: 90% (27/30) and 100% (45/45), respectively. Rates of emotional support and informational support for both groups of answers appeared to trend with the type of support emphasized in the caregiver question (emotional vs informational support question). Friendsourced answers included more shared experiences (20/30, 67%) than did crowdsourced answers (4/45, 9%).ConclusionsWe found an asynchronous, online, closed group on Facebook to be generally acceptable as a means to deliver support to caregivers of people with AD. This pilot is too small to make judgments on effectiveness; however, results trended toward an improvement in caregivers’ self-efficacy, sense of support, and perceived stress, but these results were not statistically significant. Both friendsourced and crowdsourced answers may be an acceptable way to provide informational and emotional support to caregivers of people with AD.

Do Questions Get Infants Talking? Infant Vocal Responses to Questions and Declaratives in Maternal Speech

Maternal questions play a crucial role in early language acquisition by virtue of their special grammatical, prosodic and lexical forms, and their abundance in the input. Infants are able to discriminate questions from other sentence types and produce rising intonations in their own requests. This study examined whether caregiver questions were related to the quantity of infant vocalizations. Thirty‐six infants aged 10 and 14 months participated in a laboratory play session with their mothers. In separate blocks, mothers were instructed to ask questions and to refrain from asking questions. Both block‐level and utterance‐level analyses found no evidence that maternal questions affected the amount of infant‐response vocalizations. Mothers of 14‐month‐olds (but not 10‐month‐olds) tended to repeat questions. Copyright © 2016 John Wiley & Sons, Ltd.

Global polio switch and introduction of inactivated polio vaccine in routine immunization: are medical interns aware?

Background: Health care providers play important roles in parent/caregiver acceptance. They need to provide strong support for BOPV, IPV (Inactivated polio vaccine) and multiple vaccine injections. They must be prepared to answer parents or caregiver questions. Aim of this study to assess knowledge, awareness and perception of medical interns regarding OPV switch, IPV introduction, Polio eradication, factors demanding switch and multiple vaccine delivery at single visit. Methods: A cross-sectional study was carried out among interns medical college in February 2016. They were requested to complete questionnaire regarding polio eradication, OPV switch, IPV introduction, need of switch and multiple vaccine delivery. Results: 90.63% of interns had an idea about planned introduction of IPV vaccine in routine immunization. 2/3 rd of interns had an idea about switch from TOPV to BOPV. Only 43.75% interns answered that direction of switch from TOPV to BOPV. Only 26.56% interns correctly said that there is need of multiple vaccines at single visit but 67.19% did not feel any need of that. Study highlights low level of awareness regarding switch, IPV introduction in RI and also many misconception regarding multiple vaccine delivery system. Conclusions: All these gaps are to be managed quickly through proper and timely training regarding recent advances in public health, CMEs, interactive sessions and forum where all doubts and aspects of IPV, BOPV and multiple vaccines can be clarified .

The prevalence, impact and cost of chronic non-cancer pain in Irish primary schoolchildren (PRIME-C): protocol for a longitudinal school-based survey

IntroductionPrevious research has indicated that pain influences children's daily lives, resulting in absence from school, sleep problems, poor school performance and problems with social activities. Our study aims to characterise...

PC-FACS

PC-FACS

Communication between children and carers during mealtimes

Mealtimes are identified as an important learning environment where socialisation and language development takes place. Caregivers can facilitate the structure of a child's learning in the mealtime setting. The aim of this study was to gain an understanding about the nature of communication in a normal population during mealtimes. This is important to help understanding about the nature of communication and interaction in children with disabilities during mealtimes.Participants were six typically developing preschool children aged from 8 months to 3;05 years. Caregivers of the children supported their child having a typical meal at home. Each mother–child dyad was video‐recorded by the researchers during a typical meal for up to 30 minutes. Each recording was transcribed by the researchers, and specific communicative features were counted and coded; caregiver comments about appropriate mealtime behaviour, child verbal and nonverbal initiation, caregiver questions and comments about meal enjoyment, caregiver praise of child, and caregiver repetition to coax feeding. A caregiver questionnaire was also completed to obtain information about the child's feeding, any early history of feeding difficulties and typical mealtime routine.The results indicated that the most considerable difference were between the dyads who had reported early feeding difficulties and those who had not reported any. Carers who supported children who had a history of early feeding difficulties used more language to manage and guide the child's behaviour during the mealtime. Caregivers who reported early feeding difficulties appeared to be more concerned with how their child was presenting at the meal (i.e., appropriate behaviour and meal enjoyment). This information has important implications for supporting children with complex needs during mealtimes.

The impact of caregivers' interrogative styles in English and Japanese on early bilingual development

This study examines the relationship between caregivers' conversational styles in One-Person-One-Language (OPOL) settings and early bilingual development. In particular, it attempts to demonstrate that interrogative styles may have an impact on bilingual children's responsiveness in two language contexts. It is based on longitudinal data of a bilingual child from ages 1;3 to 2;3 interacting with his English-speaking mother and Japanese-speaking grandmother. Results from a functional analysis of caregiver questions based on McDonald and Pien's model revealed that, for a given period of time, the bilingual child was exposed to a more tutorial style of interrogation in English, which frequently used questions to examine his knowledge, and a more child-centered style of interrogation in Japanese, which sought information about his feelings and needs. The contrasting interrogative styles led to varying rates of responses and contributed to faster development in English than in Japanese.

Caring for the brain tumor patient: Family caregiver burden and unmet needs

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.