Dataset Information

Family members' experiences supporting adults with chronic illness: A national survey.

ABSTRACT: INTRODUCTION:Family and friends often help chronically ill adults manage their conditions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. This study describes key roles and concerns of family members who support the health management of adults with chronic illness, and compares experiences of health supporters living in and outside of support recipients' homes. METHODS:Data were obtained from a national internet survey of 1,722 adults selected to represent the U.S. POPULATION:Detailed survey questions were completed by 703 respondents who reported providing regular disease-management help to at least one functionally-independent family member or friend with at least one of five chronic conditions (diabetes, heart failure, chronic lung disease, arthritis, depression). RESULTS:Current supporters assisted 834 chronically ill adults: 257 receiving in-home support and 577 receiving out-of-home support. Current supporters spent 2.1 hours/week on average helping their support recipient with health care, and 21.2% attended their recipient's health care appointments. Many recipients discussed crucial concerns about medication side effects (47.0%) and trouble paying for medications (32.0%) with supporters. However, 41.0% of supporters reported insufficient information about recipients' health conditions and regimen to be helpful. In-home supporters reported arguing more often with support recipients, but also received more information from recipients' health care providers than out-of-home supporters. DISCUSSION:Family and friends have significant potential to influence patients' chronic illness self-management. Programs to engage chronically ill patients' families to support self-management could provide information and skills targeting needs identified by supporters. (PsycINFO Database Record

SUBMITTER: Lee AA

PROVIDER: S-EPMC5751928 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Family members' experiences supporting adults with chronic illness: A national survey.

Lee Aaron A AA Piette John D JD Heisler Michele M Janevic Mary R MR Langa Kenneth M KM Rosland Ann-Marie AM

Families, systems & health : the journal of collaborative family healthcare 20171201 4

<h4>Introduction</h4>Family and friends often help chronically ill adults manage their conditions. Information about specific ways supporters help with disease management, and their experiences with and concerns about helping are lacking. This study describes key roles and concerns of family members who support the health management of adults with chronic illness, and compares experiences of health supporters living in and outside of support recipients' homes.<h4>Methods</h4>Data were obtained f ...[more]

PMID: 29283613

Similar Datasets

Project description:BackgroundFamily members influence maternal, child, and adolescent nutrition and are increasingly engaged in nutrition interventions and research. However, there remain gaps in the literature related to programmatic experiences and lessons learned from engaging these key influencers in nutrition activities.ObjectivesThis research aimed to document global health professionals' experiences engaging family members in nutrition activities, and their perceived barriers, facilitators, and recommendations for nutrition activities that engage family members.MethodsGlobal health and nutrition professionals were invited to complete an online survey about their experiences engaging family members in nutrition activities. The survey included 42 multiple-choice questions tabulated by frequency and 4 open-response questions, which were analyzed thematically.ResultsMore than 180 respondents (n = 183) in 49 countries with experience engaging fathers, grandmothers, and other family members in nutrition activities participated in the survey. Participants highlighted the importance of conducting formative research with all members of the family system and using participatory processes in intervention design and implementation. Respondents reported engaging family members increases support for recommended behaviors, improves program sustainability, and facilitates family and community ownership. Some respondents also shared experiences with positive and negative unintended consequences when engaging family members; for example, one-fifth of participants reported that mothers were uncomfortable with involving men in discussions. Common challenges centered on limited resources for program delivery, not involving all influential family members, and traditional gender norms. Recommendations included incorporating family members in the project design phase and ensuring sufficient project resources to engage family members throughout the project lifecycle.ConclusionsSurveying global health professionals provides an opportunity to learn from their experiences and fill gaps in the peer-reviewed literature to strengthen intervention design and implementation. Community ownership and sustainability emerged as key benefits of family engagement not previously reported in the literature, but responses also highlighted potential negative unintended consequences.

Project description:BackgroundOlder adults are a high priority for telemedicine given their elevated COVID-19 risk and need for frequent provider contact to manage chronic illnesses. It seems that many older adults now use smartphones but few studies have examined their overall readiness for telemedicine.ObjectiveThe aim of this study is to survey older primary care patients about their telemedicine preparedness, including internet usage, internet-capable devices, telemedicine experiences and concerns, and perceived barriers. Results were used to inform a telemedicine preparedness training program.MethodsCommunity-dwelling older adult patients (aged 65-81 years; N=30) with a chronic health condition that could be managed remotely who were present at a family medicine clinic that primarily serves an urban African American population for a prescheduled in-person appointment were asked to complete a brief survey written for this study. Data were collected February-June 2021 at a large, urban, Midwestern hospital. To minimize patient burden, the survey was limited to 10 questions, focused on the most critical topics.ResultsMost participants (21/30, 70%) reported having a device that could be used for telemedicine and using the internet. However, about half had only a single connected device, and messaging and video calling were the most commonly used applications. Few used email and none used online shopping or banking. Only 7 patients had had telemedicine appointments. Telemedicine users were younger than nonusers and used more internet functions than nonusers. Only 2 people reported problems with their telemedicine visits (technology and privacy). Nearly all respondents recognized avoiding travel and COVID-19 exposure as telemedicine benefits. The most common concerns were loss of the doctor-patient connection and inability to be examined.ConclusionsMost older adults reported having devices that could be used for telemedicine, but their internet use patterns did not confirm the adequacy of their devices or skills for telemedicine. Doctor-patient conversations could be helpful in addressing telemedicine concerns but device and skill gaps must be addressed as well.

Project description:BACKGROUND:Launched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify "patients like them," and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific "vertical" communities consisting only of people with the same disease to a "generalized platform," in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools. OBJECTIVE:We aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation. METHODS:A cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions. RESULTS:The invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding "does not apply" answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the "most activated" patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P<.001), 21% higher for conditions with some community customization versus none (RR=1.21, P<.001), and 11% higher in those using the site most often versus least (RR=1.11, P<.001). CONCLUSIONS:Members of the generalized platform reported a range of benefits related to improved knowledge and understanding of their condition and treatment management. Condition-specific customization may improve their experience still further. Future studies will explore longitudinal changes to patient activation.

Project description:PurposeAlthough comorbidities, frailty, and functional impairment are common in older adults (OA) with cancer, little is known about how these factors are considered during the treatment decision-making process by OAs, their families, and health care providers. Our aim was to better understand the treatment decision process from all these perspectives.MethodsA mixed methods multi-perspective longitudinal study using semi-structured interviews and surveys with 29 OAs aged ?70 years with advanced prostate, breast, colorectal, or lung cancer, 24 of their family members,13 oncologists, and 15 family physicians was conducted. The sample was stratified on age (70-79 and 80+). All interviews were analyzed using thematic analysis.ResultsThere was no difference in the treatment decision-making experience based on age. Most OAs felt that they should have the final say in the treatment decision, but strongly valued their oncologists' opinion. "Trust in my oncologist" and "chemotherapy as the last resort to prolong life" were the most important reasons to accept treatment. Families indicated a need to improve communication between them, the patient and the specialist, particularly around goals of treatment. Comorbidity and potential side-effects did not play a major role in the treatment decision-making for patients, families, or oncologists. Family physicians reported no involvement in decisions but desired to be more involved.ConclusionThis first study using multiple perspectives showed neither frailty nor comorbidity played a role in the treatment decision-making process. Efforts to improve communication were identified as an opportunity that may enhance quality of care. In a mixed methods study multiple perspective study with older adults with cancer, their family members, their oncologist and their family physician we explored the treatment decision making process and found that most older adults were satisfied with their decision. Comorbidity, functional status and frailty did not impact the older adult's or their family members' decision.

Project description:PurposeTo explore patients' and family members' experiences of participating in an intervention using nurse-led family nursing conversations (NLFCs) targeting families affected by chronic non-cancer pain (CNCP), including the perceived impact of the intervention on the individual and the family. CNCP substantially impacts patients and families. Due to a lack of simple treatment solutions, the condition needs to be managed rather than cured. Family involvement seems a promising tool, but research evaluating specific approaches is limited. Interventions based on the family systems nursing framework by Wright and Leahey have been helpful in other populations. Nonetheless, the approach warrants further investigation and evaluation in patients with CNCP.Patients and methodsA phenomenological hermeneutical design was applied, and individual interviews were conducted with ten patients and ten family members who received the intervention. The analysis was inspired by Ricoeur's philosophy of text interpretation.FindingsThree themes emerged during the analysis. "Taking part in the intervention while being affected by previous experiences" showed that patients and family members were affected by different experiences and burdens and therefore entered the intervention with varied starting points. "Being empowered through validation and understanding" showed that participants mainly viewed the intervention as beneficial, increasing patients' and family members' mutual understanding and underpinning acceptance of the chronic pain condition. "Being receptive to the intervention - mechanisms contributing to achieving benefit" identified contributing mechanisms influencing patients' and family members' experiences of the intervention. These mechanisms included confidence in the nurses' facilitation of the intervention, the timing of the intervention, the participant's level of acceptance, and readiness to engage in the intervention.Conclusion and relevance to clinical practiceThe intervention was mainly experienced as helpful. Thus, healthcare settings treating CNCP should consider implementing NLFC in clinical practice with adjustments to meet the vulnerability of the CNCP population.

Dataset Information

Family members' experiences supporting adults with chronic illness: A national survey.

Publications

Family members' experiences supporting adults with chronic illness: A national survey.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets