Caregiving Decisions Research Articles

Barriers to Outpatient Pediatric Chronic Pain Clinic Participation Among Referred Patients

Initial clinic evaluation among referred patients and factors limiting treatment initiation are not well characterized. We conducted a retrospective review of referrals to our outpatient pain clinic to identify intake visits and factors associated with treatment initiation among adolescents with chronic pain. We identified adolescents aged 13 to 18 years at the time of referral to clinic (2010-2016). Factors associated with completion of visits were evaluated using logistic regression. Patients who completed visits more frequently had private insurance than public or no insurance (P = .053). The most common reasons for caregiver decision not to attend the pain clinic included use of another pain clinic, that services were not wanted or no longer needed, and that their child was undergoing further testing. The current study demonstrated that patients with head pain were more likely to complete an intake visit, while there was a trend showing that lack of private insurance decreased this likelihood.

The role of religion and spirituality in caregiver decision-making about tracheostomy for children with medical complexity

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children’s healing, and helped them cope with their children’s illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

Caregiving work: The experiences and needs of caregivers in Australia.

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in-depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long-term illnesses were interviewed. The results showed that family caregivers 'fall into' the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.

Dementia awareness, beliefs and barriers among family caregivers in Pakistan.

Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35-80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care.

Modeling Treatment-Related Decision-Making Using Applied Behavioral Economics: Caregiver Perspectives in Temporally-Extended Behavioral Treatments.

Evidence-based behavioral therapies for children with disruptive and challenging behavior rarely yield immediate improvements in behavior. For caregivers participating in behavioral therapies, the benefits from these efforts are seldom visible until after substantial time commitments. Delays associated with relief from challenging behavior (i.e., improved behavior) can influence how caregivers decide to respond to instances of problem behavior, and in turn, their continued commitment (i.e., integrity, adherence) to treatments that require long-term implementation to produce improvements in child behavior. This study applied delay discounting methods to evaluate how delays affected caregiver preferences related to options for managing their child's behavior. Specifically, methods were designed to evaluate the degree to which caregiver preferences for a more efficacious, recommended approach was affected by delays (i.e., numbers of weeks in treatment). That is, methods evaluated at which point caregivers opted to disregard the optimal, delayed strategy and instead elected to pursue suboptimal, immediate strategies. Results indicated that caregivers regularly discounted the value of the more efficacious treatment, electing to pursue suboptimal approaches when delays associated with the optimal approach grew larger. Caregivers demonstrated similar patterns of suboptimal choice across both clinical (i.e., intervention) and non-clinical (i.e., monetary) types of decisions. These findings are consistent with research that has highlighted temporal preferences as an individual factor that may be relevant to caregiver adherence to long-term evidence-based treatments and encourage the incorporation of behavioral economic methods to better understand caregiver decision-making.

How Dementia Caregivers Make Health Service Decisions: A Scoping Review and Implications for Grounded Theory Studies

The purpose of this study is to explore the grounded theory literature surrounding the health care decisions of dementia caregivers and to evaluate the rigor of these studies according to methodological guidelines. This scoping review was guided by Arksey and O’Malley’s scoping review framework. Articles were then evaluated against key principals of grounded theory. Results from five included articles show that while researchers label their study as grounded theory, some aspects of the methodological principles do not get adhered to. We draw lessons from these shortcomings to make recommendations for future research. Exploration of the shortcomings of grounded theory research could offer suggestions for improving the overall methodological rigor in dementia caregiving research, which may enhance the credibility of the findings. Grounded theory methodologies in dementia caregiving research could move findings from qualitative descriptions to explanations of processes, such as substitute decision-making for dementia caregivers.

Development and Implementation of the Family Caregiver Decision Guide.

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG). The Guide entails four steps: thinking about the current caregiving situation, imagining how the caregiving situation may change, exploring available options, and considering best options if caregiving needs change. The FCDG was based on available evidence and was developed and refined using focus groups, cognitive interviewing, and a feasibility and acceptability study. Finally, an interactive version of the Guide was created for online use ( https://www.caregiverdecisionguide.ca ). In this article, we describe the development, evaluation, and utility of the FCDG.

Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study.

Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children. Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes. Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness. Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.

Informal Caregiver Decision-Making Factors Associated With Technology Adoption and Use in Home Healthcare: A Systematic Scoping Review.

Technology systems to alleviate the burden of caregiving are increasing in use. The home is a unique place where chronic disease management is often performed by informal caregivers, yet how caregivers make decisions about adopting a specific technology has not been thoroughly explored. This systematic scoping review mapped evidence on decision-making factors associated with technology adoption and use by caregivers of patients receiving care at home. We followed the recommendations developed by members of the Joanna Briggs Institute. Four electronic databases (PubMed, Medline, CINAHL, and Embase) were searched using both medical subject headings (MeSH terms) and key words. A total of six papers were included for data synthesis. Factors such as information, comprehension, motivation, time, perceived burden, and perceived caregiving competency were found to affect adoption of technology. There are other factors uniquely springing from the patient and technology, as well as shared issues between caregivers and patient, and caregivers and technology. Although some factors depend on technology type and patient diagnosis, there were some common factors across the research. Those factors can be carefully considered in referring technology use for caregivers. More focused study in this underinvestigated area is much needed.

Two Constructive Algorithms to Address a Multi-Depot Home Healthcare Routing Problem

Nowadays, there is a great deal of attention about the care of aging population. This motivates the home healthcare services to provide nursing and general hygiene cares at patient home for elderly persons in a situation of dependency. The routing decisions of caregivers to specify the assignment of patients and their sequence for visits are very important for related companies to reduce the transportation costs. Hence, this study proposes a novel multi-depot home healthcare routing model with the supposition of controlling the overall distance. Another contribution of this research is to propose two simple constructive algorithms to solve the developed problem. Finally, results confirm the efficiency of the second developed algorithm as well as the performance of the proposed model during different problem complexities.

Caregiving and Intervention Uptake, an Exploration of Women’s Experiences with Nutrition- specific and Nutrition- sensitive Interventions in Rural Zimbabwe (P10-132-19)

ObjectivesTo explore women’s caregiving experiences, and identify motivators and barriers to the uptake, of interventions aimed at improving health and nutrition behaviors. Methods40 in-depth interviews were conducted with a purposely selected sample of caregivers of infants (age 12 months to 18 months) using a semi structured interview guide. All participants in the interviews had received one or more interventions in the Sanitation Hygiene Infant Nutrition Efficacy (SHINE) trial, which included nutrition specific and nutrition sensitive messages delivered one on one by Village Health workers (VHWs) in the participant’s household. All interviews were audio recorded, transcribed and translated, and then analyzed for themes and sub-themes, using standard text analysis coding procedures. ResultsBased on mothers’ narratives in response to broad, open-ended questions, the barriers and facilitators of reported appropriate child care practices and intervention uptake can be classified under four major themes: (1) caregiving environment (including sub themes around perceived child health and well-being, family involvement, social support, cultural/social norms, resources and husband involvement), (2) maternal capabilities (with sub themes around caregiver knowledge, self-efficacy and time, (3) intervention messages (with sub themes around perceived ease/complexity of intervention, mode of delivery and duration of intervention lessons), and (4) intervention delivery agent (with sub themes around perceived VHW knowledge, communication skills and reliability). ConclusionsOur results show that in rural Zimbabwe caregiving decisions and hence intervention uptake is influenced by multiple factors, but the underlying dynamic can be characterized in terms of the interaction between caregiver actions and child feedback. Funding SourcesSupported by the Bill & Melinda Gates Foundation, the UK Department for International Development and Borlaug LEAP.

Perceived benefits and risks of participation in a clinical trial for Ugandan children with sickle cell anemia.

Understanding factors that affect the decisions of caregivers of African children to enroll their children in clinical trials would lead to more fully informed consent. During the NOHARM study (NCT01976416), a placebo-controlled clinical trial of hydroxyurea for Ugandan children with sickle cell anemia (SCA), 206 caregivers were given a semistructured questionnaire about factors that influenced participation in the study and their perceptions of study benefits and risks. Factors were further assessed with focus group discussions. Caregivers identified education provided during the recruitment process (44%), the child's current poor state of health (35%), and the possibility of improvement in the child's health (16%) as their primary initial reasons for deciding to participate in the NOHARM trial. Concerns regarding the drug or participation in a research study, including the stated concern of death by several caregivers, were outweighed by the possibility of improvement in the child's health. During the study, 72% of caregivers cited improved health as an advantage of study participation, while disadvantages cited included the potential side effects of hydroxyurea, most of which did not occur during the trial. Our study findings highlight the generally poor state of health of Ugandan children with SCA, the desperation by caregivers for anything that could improve the child's health, and the inevitable improvements in care that result from strict adherence to a study protocol, even a protocol based on local guidelines. Studies in this vulnerable population must be careful not to portray improved care as a primary incentive for participation.

LO32: A two-centre survey of caregiver perspectives on opioid use for children's acute pain management

Introduction: Given the current opioid crisis, caregivers have mounting fears regarding use of opioid medication in their children. Since caregivers are often the gatekeepers to their children's pain management, understanding their perspectives on analgesics is essential. For caregivers of children with acute injury presenting to the pediatric emergency department (PED), we aimed to determine caregivers’: a) willingness to accept opioids from emergency care providers, b) reasons for refusing opioids, and c) past experiences with opioids. Methods: A novel 31-item electronic survey was offered, via tablet device, to caregivers of children aged 4-16 years who had a musculoskeletal injury <7 days old and presented to one of two Canadian PEDs between March and November 2017. Primary outcome was caregiver willingness to accept opioids for moderate pain for their children. Results: 517 caregivers completed the survey; mean age was 40.9 +/−7 years with 70.0% (362/517) being mothers. Children included 62.2% (321/516) males with an overall mean age of 10 +/−3.6 years. 49.6% of caregivers (254/512) reported willingness to accept opioids for moderate pain that persisted after non-opioid analgesia, while 37.1% (190/512) were unsure what they would do. Only 33.2% (170/512) of caregivers stated they would accept opioid analgesia upon discharge while 45.5% (233/512) were unsure about at-home use. Caregivers were primarily concerned about side effects, overdose, addiction, and masking of diagnosis. Caregiver fear of addiction (OR 1.12, 95% CI 1.01-1.25) and side effects (OR 1.25, 95% CI 1.11-1.42) increased the odds of rejecting opioids in the emergency department, while fears of addiction (OR 1.19, 95% CI 1.07-1.32) and overdose (OR 1.15, 95% CI 1.04-1.27) increased the odds of rejecting opioids for at-home use. Conclusion: Only half of caregivers reported that they would accept opioids for moderate pain, despite ongoing pain following non-opioid analgesics. Caregiver fears of addiction, side effects, overdose, and masking their child's diagnosis influence their behaviours. These findings are a first step in understanding caregiver decision-making and can guide healthcare providers in their conversations about acute pain treatment with families.

Perceived Mental Healthcare Barriers and Health-seeking Behavior of African-American Caregivers of Adolescents with Mental Health Disorders

African-American adolescents with mental health disorders are more likely to experience higher rates of depressive moods but are less likely to utilize mental health resources. Mental healthcare providers inform caregivers of adolescents with mental health issues about appropriate resources to facilitate appropriate treatment decisions. Although we understand rates of utilization of services, little understanding exists concerning socio-ecological barriers African-American caregivers experience when seeking mental health care for their adolescents. This study explores African-American caregiver perceptions of barriers to mental health care for adolescents with mental health disorders. We sought to understand how these perceptions influence African-American caregiver mental health-seeking behavior. This qualitative study utilized semi-structured interviews using a grounded theory approach to identify common themes describing experiences of African-American caregivers accessing mental health care for their adolescents. Previous caregiver experiences with mental illness, perceptions of social support, early intervention by educators and extrinsic behavior requiring medication compliance affected caregiver decision-making. Stigma associated with mental illness was a potential barrier to access to mental health care. Financial barriers that prevent access to care and an overall belief that mental health may not be as important as other issues was not identified as affecting health-seeking behaviors for mental health care. Caregivers who struggled with mental health issues themselves recognized these in adolescents and sought mental healthcare services. Caregiver previous experiences with mental healthcare services influenced their decision-making. Healthcare provider ability to engage adolescents, caregivers, and support systems increases the possibilities for positive experiences and continuation of treatment.

Health care professionals' perceptions and experience of initiating different modalities for home enteral feeding

With an aging population, there is a concomitant increase in number of patients with dysphagia; and hence increase in prevalence of enteral feeding. Health care professionals play a critical role in informing decisions of patients and caregivers on their choice of modality for long-term home enteral feeding. To explore the perceptions of health care professionals on different modalities for enteral feeding and their experiences in initiating long-term enteral feeding among adult patients. A qualitative explorative descriptive study design with purposive sampling approach was adopted. A total of four speech therapists, fifteen nurses and seven doctors who were ever involved in initiating long term home enteral tube feeding were recruited over a data collection period of August to December 2017. One to one interviews were conducted and audio-recorded. An inductive content analysis approach, with open coding, creation of categories and abstraction of data was adopted. Four main themes were generated: (1) Naso-gastric Tube Feeding (NGT) is health care professionals' first choice of modality; (2) Percutaneous Endoscopic Gastrostomy Tube Feeding (PEG) is regarded as an alternative approach; (3) Perceived better outcomes with PEG; and (4) Identified barriers to promotion of PEG. NGT remained as the modality of choice although health care professionals perceived that patients will have better outcomes with the use of PEG.

Health effects of caring for and about parents and spouses

Informal caregiving is a potentially attractive alternative to formal care but may entail health costs for the caregiver. We examine the mental and physical health impact of providing informal care and disentangle the caregiving effect – the effect of caring for someone in need – from the family effect – the effect of caring about someone in need. We account for the main sources of endogeneity in the caregiving decision using Arellano-Bond difference GMM models. We use four waves (2010–2013) of panel data from the Dutch Study on Transitions in Employment, Ability and Motivation (STREAM). We find that caregiving harms the mental health of caregivers; the effect is more prominent for spousal caregivers. On top of this, a negative health shock of a family member also has a direct negative effect on mental health, providing evidence of a family effect. Our findings thus highlight that the total effect of having a sick relative may be underestimated when the family effect is not adequately accounted for. As the caregiving effect differs substantially between various types of caregivers, policies to cushion these effects should specifically target those subgroups of caregivers that carry the largest burden of informal caregiving.

Caregivers' Experience of Decision-Making regarding Diagnostic Assessment following Cognitive Screening of Older Adults.

Targeted screening for dementia among older adults in primary healthcare has potential benefits such as better clinical outcomes and the opportunity to access services. Cognitive screening can be followed up by further diagnostic assessment to determine a diagnosis of dementia. Unfortunately, the rates of accepting further diagnostic assessment following cognitive screening are low. The objective of this study was to explore the caregivers' decision-making process regarding uptake of diagnostic assessment following positive screening results. A qualitative design was employed, and interpretative phenomenological analysis was used to analyze the data. Three major themes in caregiver decision-making were identified: gathering information, protecting the patient, and balancing obligation and convenience in caregiving. These findings suggest that the decision-making process involved effort to process information through observations of the patient and that caregivers emphasized quality of life.

Aider un parent âgé dépendant. Configurations d’aide et interactions dans les fratries en France

À partir de l’enquête Handicap-Santé, volet Ménages (Insee-Drees, 2008), nous étudions les configurations d’aide familiale autour d’un parent âgé et dépendant en France. Une première étape descriptive montre que l’aide apportée par les enfants est affectée par le statut conjugal du parent, la taille de la fratrie et le rang dans la fratrie. L’analyse se concentre ensuite sur les familles de 2 enfants et montre que les écarts de mobilisation observés selon le rang découlent de trois sources : les différences de caractéristiques individuelles entre aînés et cadets, l’impact différent de ces caractéristiques sur la décision d’aide, et enfin une différence dans l’ajustement des uns au comportement des autres (interactions endogènes). L’impact des caractéristiques familiales apparaît en effet relativement similaire pour les aînés et les cadets – en particulier la forte assignation au rôle d’aidant des femmes avec un frère –, mais le comportement des cadets fait apparaître en outre un arbitrage entre coûts et utilité de l’aide. Avec une définition de l’aide ciblée sur les tâches de la vie quotidienne, une seule explication majeure des différences demeure : l’asymétrie dans l’ajustement au comportement de l’autre enfant, à caractéristiques individuelles et familiales données.

Caregivers' understanding of fluoride varnish: implications for future clinical strategies and research on preventive care decision making.

To describe caregivers' understanding of fluoride varnish. We administered the Oral Health Literacy Inventory for Parents within a pediatric dental clinic (N = 113). Caregivers were asked to read and define each item. Interviews were audio recorded, transcribed, and coded inductively. The main analyses focused on responses to "fluoride varnish" and were conducted at the response level. Of the 140 responses, 22.1 percent of the responses indicated lack of knowledge about fluoride varnish, 23.6 percent that it was for teeth, 8.6 percent as something in toothpaste or water, and 45.7 percent as something that helps teeth. About 52.7 percent of responses indicated lack of knowledge, incomplete, or incorrect understanding. At the caregiver-level, 50.4 percent did not know what fluoride varnish was or provided an incorrect or incomplete response. Many caregivers have an incomplete or inaccurate understanding of fluoride varnish, which has implications for how healthcare providers communicate about preventive care and future research on caregiver decision making.

Factors influencing caregiver decision making to change the communication method of their child with hearing loss

ABSTRACTThe communication journey of a child with hearing loss is often a complex, interwoven process in which the child's use of language or method of communication may change numerous times. As there has been limited research exploring the caregiver decision-making process behind making such changes, this qualitative descriptive study aimed to explore the factors which influence the caregiver decision making-process to change the communication method of their child with hearing loss. Individual semi-structured in-depth interviews were conducted with seven caregivers of children with hearing loss in Australia. Thematic analysis revealed five key themes which influenced caregiver decisions regarding changes to their child's method of communication, including: (1) family characteristics; (2) family access to information; (3) family strengths; (4) family beliefs; and (5) family-centered practice. The overall finding that the family unit is at the core of decision-making has important clinical implications regarding early intervention professionals’ provision of family-centered services when working with the families of children with hearing loss.