Family Care Providers Research Articles

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Background and AimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

Beyond dyadic communication: Network of communication in inflammatory arthritis teams.

To explore how communication is perceived and care is negotiated amongst IA healthcare teams by drawing on the perspectives of each team member. This analysis drew on data from an ongoing three-year study exploring team-based IA care. We interviewed 11 participants including two men with IA and their family care providers and healthcare providers. We used a three-staged analytic process and integrated broad tenets of social network theory to understand the relational dimensions of team members experiences. Analysis revealed three themes regarding communication and care: (1) seeking/sharing information, (2) striving to coordinate unified care, and (3) providing patients a voice. This study emphasizes the importance of understanding team dynamics beyond the dyad of patient and care provider. Negotiating power and decision-making in IA care is a dynamic process involving shifting levels of responsibility amongst a care team. Communication-based strategies that extend dyadic interactions may enhance teamwork and health outcomes in chronic conditions.

Emerging Marketing Research on Healthcare and Medical Decision Making: Toward a Consumer-Centric and Pluralistic Methodological Perspective

Emerging Marketing Research on Healthcare and Medical Decision Making: Toward a Consumer-Centric and Pluralistic Methodological Perspective

Family-centred care change during COVID-19.

BackgroundFamily‐centred care (FCC) is an approach to promote family and health care provider partnership. This has been incorporated into neonatal intensive care units (NICUs) worldwide. However, FCC in low resource health settings, such as Thailand, is challenging and further impacted by coronavirus disease 2019 (COVID‐19).AimsTo evaluate FCC innovations to improve respect, collaboration and support in a Thai NICU.Study designA quasi‐experimental study was conducted in an NICU in southern Thailand. Pre‐implementation was prior to COVID‐19, and parental and staff perceptions of FCC were measured via Perceptions of Family Centred Care‐Parent (PFCC‐P) and ‐Staff (PFCC‐S) survey. The FCC innovations were developed by stakeholders based on the COVID‐19 restrictions, pre‐survey results, parents' and clinicians' interviews and integrative review, then implemented via a flowchart. Post‐implementation evaluation was via repeated surveys. Comparisons were made pre‐and post‐implementation, with Mann–Whitney U‐test statistics for parents and Wilcoxon's Rank Sum for staff.ResultsA total of 185 (85 pre; 100 post) parents and 20 (pre and post; paired group) health care professionals participated. Because of COVID‐19, many planned interventions were unfeasible, however, other innovations achieved (e.g., structured telephone updates, information booklet revision). There was an increase in parents' perception of respect ([median] 2.50–3.50), collaboration (2.33–3.33) and support (2.60–3.60) domains and overall (2.50–3.43; p < .001; 95% CI: 2.93–3.11). Interdisciplinary professionals' perception of FCC did not significantly change pre‐and post‐implementation/COVID‐19 pandemic for respect (3.00–2.92), collaboration (3.22–3.33), support (3.20–3.20) and overall (3.15–3.20; 95% CI: 3.10–3.25).ConclusionDespite the challenges of COVID‐19 restricting NICU access, the provision of FCC was maintained and even improved.Relevance to clinical practiceFurther research is necessary to develop FCC practice innovations associated with communication, across diverse health care systems and resources.

Management of Type 1 Diabetes in Children in the Outpatient Setting.

Management of Type 1 Diabetes in Children in the Outpatient Setting.

Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective

The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and to expose themselves to potential consequences or learning opportunities. Historically, a more paternalistic approach, done as a benevolent assurance of safety, has been taken with individuals with intellectual disabilities. While optimizing safety, this approach can limit opportunity and, more importantly, limit the dignity of the individual. However, the concern for safety and the sense of responsibility to keep individuals with intellectual disabilities from harm is solidly entrenched and is not without some merit. "Supported decision-making" can offer an alternative to guardianship for some individuals, providing structured processes to enhance full participation. Strategies to involve individuals with intellectual disabilities in their own decision-making and to optimize the safety of those decisions include expanding the discussion of the concept of dignity of risk with family members and care providers of individuals with intellectual disabilities before they turn 18 years old; providing social-skills training and other educational opportunities that promote the likelihood of success in activities and decision-making; and maintaining guardrails when needed to prevent serious harms.

Anticipatory Burden in Adult-Child Caregivers: A Concept Analysis.

This study aims to analyze the concept of anticipatory burden in adult-child caregivers. A systematic literature review was performed using four databases, Pubmed, CINAHL, PsycINFO and Medline, with the keywords of “anticipatory burden” and “anticipated burden”. Simplified Wilson’s classic concept analysis modified by Walker and Avant was employed to identify the attributes, antecedents and consequences of anticipatory burden in the adult-child caregivers. Eighteen articles were analyzed. Attributes of anticipatory burden in adult-child caregivers were found to be: (1) subjective burden, (2) anticipation, (3) overestimation, (4) inability, and (5) family relationship. Antecedents were identified as: (1) potential care recipients, (2) caregiving willingness, and (3) a lack of resources. Consequences included: (1) prediction of caregiving willingness, (2) impacts on caregivers’ health, (3) intervention promotion, and (4) behavioral changes. As the adult-child caregiver is one of the main types of family caregivers for the fast-growing aging population, it is important to understand the attributes, antecedents, and consequences of their anticipatory burden. Based on the results of this study, resources such as intervention, policy, and counseling services are recommended to help adult-child caregivers lower their anticipatory burden and get better prepared for providing family care.

Family Function Associated with Psychological Symptoms in Pregnant Women during Pandemic of COVID-19

The study investigated the association of family functions with psychological problems and fear of COVID-19 during pregnancy. In a cross-sectional, 385 pregnant women completed three questionnaires including Family APGAR, Symptom Checklist-25 (SCL-25), and Fear of COVID-19. The family function was a significant negative predictor of psychological distress. The findings highlight the role of family function in mental health of pregnant women during pandemic of COVID-19. The results suggest that educating women, their family, and health care providers about the benefits of enhancing family function may facilitate reduction of psychological distress of pregnant women.

Neighborhood Relationship Matters for Whom?: Interaction With Family Structure and Functional Conditions

Living environment is considered to have unignorable effect on our health and well-being, especially when we face shrinkage of mobility as we age. Social interaction with neighbors constitutes our social environment, and it may affect our well-being by interacting with other social resources such as support from family and professional care providers. In this study we examined the effect of social environment in neighborhood on older people’s well-being, and how its effect is moderated by their family structure, functional conditions, and LTC service usage. Data was obtained from the survey conducted in 2012 with nationally representative sample of Japanese adults aged 60 years and older. The results showed that for people with functional limitation but were not certified as needing LTC, neighborhood social network was positively associated with well-being. These results suggest the unique function of neighbors for frail people to keep everyday life in the community.

Phase‐specific health system costs of dementia in Ontario, Canada: A propensity score‐matched cohort study

AbstractBackgroundDue to increases in the prevalence of dementia across Canada, the economic burden of dementia on provincial health systems is expected to rise. A better understanding of the phase‐specific costs of dementia care, such as periods immediately prior to and following diagnosis as well as other critical points in the life course are needed to support capacity planning. We estimated the phase‐specific costs of dementia over time among older adults and by sex.MethodWe identified a cohort of 164,640 Ontario residents aged 66+ years, ascertained with incident dementia and residing in the community between April 1st, 2010 and March 31st, 2017. Controls, who had no previous dementia diagnosis, were 1:1 propensity‐score matched to persons with dementia and individuals were followed to death or study end (March 31st, 2018). Costs included inpatient care, emergency department care, ambulatory care, home care, long‐term care, physician and healthcare professional services, and prescription drugs. Phase‐based costing methodology examined mean net costs of dementia care throughout four phases of disease progression (pre‐diagnosis, initial, continuing, terminal) and 5‐year net costs.ResultPersons with dementia and matched controls (mean age 81.3 years; 58.7% female) were followed for an average of 3.2 years. Mean net costs of dementia were highest in the terminal phase ($32,679), followed by the initial ($17,656) and continuing phases ($13,423). Higher costs in the dementia group in the terminal phase were driven by acute care (net cost: $16,324, 95% CI [15,478, 17,170]) and long‐term care ($14,006, 95% CI [13,848, 14,164]). Net home care costs were highest in the initial phase ($1,839, 95% CI [1,796, 1,882]). The net 5‐year cost of dementia was $48,077 (95% CI [$47,183, $48,970]; women had higher 5‐year net costs than men ($50,158, 95% CI [$49,053, $51,263] vs. $44,800, 95% CI [$43,323, $46,277]).ConclusionObserved higher net costs of dementia in specific phases (terminal) and sectors (acute care, long‐term care, home care) highlight where to target interventions to optimize healthcare use and costs that respects quality of life for older adults with dementia and their family care providers.

Effects of the Co-occurrence of Diabetes Mellitus and Tooth Loss on Cognitive Function.

Both diabetes mellitus (DM) and poor oral health are common chronic conditions and risk factors of Alzheimer's disease and related dementia among older adults. This study assessed the effects of DM and complete tooth loss (TL) on cognitive function, accounting for their interactions. Longitudinal data were obtained from the 2006, 2012, and 2018 waves of the Health and Retirement Study. This cohort study included 7,805 respondents aged 65 years or older with 18,331 person-year observations. DM and complete TL were self-reported. Cognitive function was measured by the Telephone Interview for Cognitive Status. Random-effect regressions were used to test the associations, overall and stratified by sex. Compared with older adults without neither DM nor complete TL, those with both conditions (b = -1.35, 95% confidence interval [CI]: -1.68, -1.02), with complete TL alone (b = -0.67, 95% CI: -0.88, -0.45), or with DM alone (b = -0.40, 95% CI: -0.59, -0.22), had lower cognitive scores. The impact of having both conditions was significantly greater than that of having DM alone (p < .001) or complete TL alone (p = 0.001). Sex-stratified analyses showed the effects were similar in males and females, except having DM alone was not significant in males. The co-occurrence of DM and complete TL poses an additive risk for cognition. Healthcare and family-care providers should pay attention to the cognitive health of patients with both DM and complete TL. Continued efforts are needed to improve older adults' access to dental care, especially for individuals with DM.

Perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt.

Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. The study aimed to assess the perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt. Total number of 500 oncology children's family care providers was recruited. A descriptive research design was utilized. Researchers used three tools as Structured Interview Questionnaire to assess the participants' knowledge and perceived barriers, Attitude toward palliative care Likert Scale, and Reported Practices Observational Checklist. The study was conducted in outpatient cancer clinics affiliated with El-Nasr governmental hospital located at Port Said governorate. 51.8% of the total oncology children's family care providers had sufficient knowledge, 78.6% had a positive attitude, while,76.8% of them had inappropriate Practice towards palliative care. The pediatric oncology family care providers had sufficient knowledge and a positive attitude toward palliative care, but their practices were inappropriate. Also, the majority of participants identified Lack of family care providers training in pediatric palliative care and improper communication between the health team and family care providers as the main barriers to providing palliative care to children. Providing a palliative care training program for family caregivers through continuing professional development is highly recommended besides further research studies using large probability samples at different settings.

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

Background: The American Academy of Pediatrics and the National Association of Neonatal Nurses recommend that palliative care be provided as standard care in neonatal intensive care units (NICUs). Objectives: The present study aimed to explain the nurses' experiences of barriers to palliative care in NICUs. Methods: This qualitative study was conducted using the content analysis approach in NICUs of Beheshti and Amin hospitals in Isfahan in 2020. The data were collected using semi-structured in-depth interviews with 12 nurses who had palliative and end-of-life care experiences for infants and families. The nurses were selected using purposive sampling. The duration of each interview varied from 25 to 50 minutes. Data were analyzed using conventional qualitative content analysis conducted inductively with Graham and Lundman’s approach. The criteria proposed by Guba and Lincoln were used to ensure the credibility and reliability of the data. Results: Three main categories were extracted from the data, including unfavorable conditions (subcategorized into “unsuitable physical environment” and “shortage of nurses”), nurse's mental problems (with the subcategories of “nurses’ mental problems in providing neonatal care” and “nurses’ mental problems in providing family care”) and challenges ahead (with the subcategories of "parental presence challenge” and “doctor's instructions challenge”). Conclusions: The findings of the present study revealed the barriers to palliative care for infants and families in NICUs. Given the importance of palliative care in NICUs, effective measures must be taken to overcome these barriers.

Perceptions, Beliefs, and Experiences of Asians and Micronesian Islanders on Family Health History Genetic Cancer Screening Community Outreach.

Cancer carries stigma, taboos, and shame including, for diverse communities, who can have difficulty understanding and communicating about family health history genetic cancer screening (GCS). The Oregon Health Authority ScreenWise Program reached out to our academic-community research team to explore Asians and Micronesian Islanders (MI) perceptions on public health education outreach on GCS due to having previously only worked with the Latinx community. The purpose of the qualitative description pilot study was to elicit perceptions, beliefs, experiences, and recommendations from Asian and MI community leaders and community members regarding family health history GCS outreach in communities. Twenty Asians (Chinese and Vietnamese) and Micronesian Islanders (Chuukese and Marshallese) were recruited from the US Pacific Northwest. Nineteen participants are immigrants with an average 21.4 and 18.5 years having lived in the USA, respectively. Individual in-depth interviews were conducted using a semi-structured, open-ended interview guide and analyzed using conventional content analysis. Three main transcultural themes were identified: (1) degree of knowing and understanding cancer screening versus family health history GCS, (2) needing culturally relevant outreach messaging on family health history GCS, and (3) communication and decision-making regarding discussing with family and health care providers about cancer screening and GCS. Culturally relevant messaging rather than generic messaging is needed for inclusive outreach. Healthcare providers are encouraged to assess a client’s family health history routinely because Asian and MI clients may not understand the information requested, may be hesitant to offer, or unable to provide information about their personal or family history of cancer.

A Qualitative Study of the Social and Lived Experiences of Homebound Older Adults.

The number of homebound older adults is increasing in the United States. We aimed to examine their social and lived experiences and to understand their perspectives on their situation, feelings, and coping mechanisms. We conducted a cross-sectional qualitative study using semi-structured interviews with 18 older homebound individuals in Central Virginia. Homebound older adults experienced both physical and mental health challenges that restricted their ability to participate in activities of daily living, recreation, and social interactions. Participants often felt dependent, helpless, lonely, and socially isolated. Those who communicated regularly with friends, family, and health care providers reported positive benefits from these interactions. Participants faced challenges to their physical, emotional, and mental well-being. Our findings might help clinicians, policymakers, and community organizations understand how to better support homebound older adults. We should provide educational opportunities, respect their autonomy, and implement initiatives to address their isolation and loneliness.

The Lived Experience of a Newly Diagnosed Older Person With HIV in Ukraine.

Low- and middle-income countries are home to 80% of older people with HIV (OPWH). Ukrainian OPWH experience higher mortality and decreased antiretroviral therapy (ART) initiation than younger patients, but there is little data examining OPWH's perspectives around new diagnosis and impact on care. In this study, we examined accounts of 30 newly diagnosed OPWH in Ukraine, exploring challenges faced in the peri-diagnosis period. Themes emerged representing the longitudinal coping process: OPWH (1) viewed themselves as low risk before diagnosis; (2) experienced HIV diagnosis as a traumatic event challenging their self-image; (3) used disclosure to seek support among a small circle of family, friends, or health care providers; (4) avoided disclosure to outsiders including primary care providers for fears of stigma and breaches in confidentiality; (5) viewed age as an asset; and (6) used HIV diagnosis as starting point for growth. These findings highlight the need for age-specific programming to increase HIV knowledge and coping, increase screening, and improve long-term planning.

Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay.

Endometriosis is a chronic gynecological disease that affects approximately 1 in 10 women of reproductive age. Symptoms of severe pelvic pain, infertility, fatigue, and abnormal menstruation can cause significant negative effects on an individual’s physical and mental health, including interactions with their family, friends, and health care providers. Stigma associated with endometriosis has been under-studied and is rarely discussed in current literature. Herein, this paper aims to provide a brief overview of published literature to explore and establish the plausibility of stigma as a driver of suboptimal psychosocial well-being and diagnostic delay among individuals living with endometriosis. We present the clinical characteristics and physical and mental health consequences associated with endometriosis, highlight several theoretical constructs of stigma, and review the limited studies documenting women’s lived experiences of endometriosis-related stigma. To mitigate harmful effects of this phenomenon, we recommend increasing efforts to assess the prevalence of and to characterize endometriosis-related stigma, implementing awareness campaigns, and developing interventions that combat the multidimensional negative effects of stigma on timely care, treatment, and quality of life for individuals living with endometriosis.

Conditions and strategies to meet the challenges imposed by the COVID-19-related visiting restrictions in the intensive care unit: A Scandinavian cross-sectional study

ObjectivesTo examine conditions and strategies to meet the challenges imposed by the coronavirus disease 2019 (COVID-19)-related visiting restrictions in Scandinavian intensive care units. Research methodology/designA cross-sectional survey. SettingAdult intensive care units in Denmark, Norway and Sweden. Main outcome measuresLikert scale responses and free-text comments within six areas: capacity and staffing, visiting policies and access to the unit, information and conferences with relatives, written information, children as relatives and follow-up initiatives. ResultsThe overall response rate was 53% (74/140 participating units). All intensive care units had planned for capacity extensions; the majority ranging between 11 and 30 extra beds. From March–June 2020, units had a mean maximum of 9.4 COVID-19 patients simultaneously. Allowing restricted visiting was more common in Denmark (52%) and Norway (61%) than in Sweden where visiting was mostly denied except for dying patients (68%), due to a particular increased number of COVID-19 patients. The restrictions forced nurses to compromise on their usual standards of family care. Numerous models for maintaining contact between relatives and patients were described. ConclusionVisitation restrictions compromised the quality of family care and entailed dilemmas for healthcare professionals but also spurred initiatives to developing new ways of providing family care.

Needs and Preferences Regarding Nutrition and Supplement Use Among Individuals with Myeloproliferative Neoplasms: A Focus Group Study

Background: The myeloproliferative neoplasms (MPNs) are a type of hematologic malignancy with severe symptom burden and increased inflammation. Therapeutic intervention is focused on patients with advanced disease with limited options for patients with indolent disease. Changes in diet, particularly alterations that highlight foods with anti-inflammatory properties, have been effective in controlling inflammation and symptoms in other disease states. To date no dietary interventions have been evaluated among MPN participants.Methods: Focus group participants consisted of MPN participants recruited from the “We are MPN” participant conference in Irvine, California in April 2017. Participants were asked to complete a demographic and disease-related questionnaire, undergo a blood draw and body fat composition testing, and participate in a focus group regarding nutritional needs and preferences. The focus group was held following the conference and thematic analysis was used to analyze the transcript. Thematic analysis was coded, reviewed, and agreed upon by study coinvestigators.Results: Demographics and disease features: Thirteen individuals diagnosed with MPN agreed to participate in the study. The majority of the participants were female (77%). Approximately half (45.5%) lived near the conference. The average age of participants was 53.6 years old (range 23-77). Participants included those with an ET (45.5%), PV (36.4%), and MF (18.2%) diagnosis. Average BMI was 22.3kg/m2 (range 17.8-26.9) with a mean percentage body fat of 29% (range 8.4%-40.3%). The mean waist circumference was 80cm (range 68-91). The majority (81%) of Participants noted having a stable weight over the last 6 months (81.8%). Mean MPN-10 score was 21.5.Focus Group Themes: 11 participants were able to stay following the conference to participate in the focus group. Seven themes were identified as detailed in Table 1. MPN participants frequently reported food restrictions or intolerances that were related to their MPN and symptoms. Participants are distressed by the minimal amount of data available to help inform their dietary decisions. Time, energy, and motivation were barriers to preparing optimal dietary choices.Interventional preferences: Participants felt that they should have an intervention tailored to their specific MPN-related needs and preferences.Participants felt that recipe books and food lists through online resources and printed resources were easiest to use and most up to date. Participants preferred a diverse support system including peers, family, friend and health care providers to help enable dietary change. Participants raised the idea of interacting with each other with a curriculum equipped with strategies to help promote diet change . Optimally participants would be provided with automated immediate feedback regarding diet.Supplement use : Supplement use is common among individuals with MPNs. Participants often use online and naturopathic resources to learn about supplements.Participants were concerned about the lack of information regarding supplement use in MPNs as well as the source and quality of supplements. Finally, participants demonstrated enthusiasm and optimism in regards to non-pharmacologic interventions to alter symptom burden and/or disease course.Conclusion: Participants with MPNs are very motivated to implement dietary changes or initiate supplement use and are highly enthusiastic about the opportunity to alter their disease course or symptom burden. Further exploration of interventions that align with participant's needs and preferences for nutritional interventions including dietary change and supplement are being planned for investigation. [Display omitted] DisclosuresMesa:Ariad: Consultancy; CTI BioPharma Corp.: Research Funding; Incyte Corporation: Research Funding; Celgene Corporation: Research Funding; Gilead Sciences, Inc.: Research Funding; Promedico: Research Funding; Novartis Pharmaceuticals Corporation: Consultancy; Galena Biopharma, Inc.: Consultancy.

Neurohospitalist Practice and Well-Being During the COVID-19 Pandemic.

Neurohospitalists play an important role in, and have been variably affected by, the ongoing COVID-19 pandemic. In this study, we survey neurohospitalists to characterize practice changes and the impact of the pandemic on their well-being. A 22-item survey was distributed to neurohospitalists through the Neurohospitalist Society and the American Academy of Neurology Neurohospitalist, Stroke & Vascular Neurology, and Critical Care & Emergency Neurology Sections. After 2 weeks of collection, 123 responses were received, with 57% of respondents practicing in academic settings, 23% in private practice, and 7% in community hospitals. A minority of neurohospitalists (8%) were redeployed to care for COVID-19 or non-COVID-19 medicine patients. The most common neurologic diagnoses they reported in COVID-19 patients were delirium (85%), cerebrovascular events (75%), and seizure (35%); however, most neurohospitalists (59%) had evaluated fewer than 10 patients with COVID-19. Respondents observed that fewer patients with unrelated neurological diseases were admitted to the hospital compared to before the pandemic. Neurohospitalists experienced changes in administrative (27%), educational (15%), and research duties (11%), and had overall worse well-being and work-life balance (77%). The most common neurologic diagnoses seen in COVID-19 patients by neurohospitalists in this sample are delirium, cerebrovascular disease, and seizure. Though the majority of survey respondents reported not being primary frontline providers, they report key clinical and operational roles during the pandemic, and report worse well-being as compared to before the pandemic. Our data suggests that there are opportunities to improve neurohospitalists' experience through flexible work practices and providing family care support.