Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.
Ontology highlight
ABSTRACT:
SUBMITTER: Schulman-Green D
PROVIDER: S-EPMC8114560 | biostudies-literature | 2021 Feb
REPOSITORIES: biostudies-literature
Publications
Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.
Schulman-Green Dena D Feder Shelli L SL Dionne-Odom J Nicholas JN Batten Janene J En Long Victoria Jane VJ Harris Yolanda Y Wilpers Abigail A Wong Tiffany T Whittemore Robin R
Journal of family nursing 20201217 1
Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 ...[more]
Similar Datasets
Project description:AimTo identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis.BackgroundSelf-management is an individuals' active management of a chronic illness in collaboration with their family members and clinicians.DesignQualitative metasynthesis.Data sourcesWe analysed studies (N = 53) published between January 2000-May 2013 that described factors affecting self-management in chronic illness as reported by adults aged over 18 years with chronic illness.Review methodsSandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis and synthesis of findings.ResultsCollectively, article authors reported on sixteen chronic illnesses, most commonly diabetes (N = 28) and cardiovascular disease (N = 20). Participants included men and women (mean age = 57, range 18-94) from 20 countries representing diverse races and ethnicities. We identified five categories of factors affecting self-management: Personal/Lifestyle Characteristics; Health Status; Resources; Environmental Characteristics; and Health Care System. Factors may interact to affect self-management and may exist on a continuum of positive (facilitator) to negative (barrier).ConclusionUnderstanding factors that influence self-management may improve assessment of self-management among adults with chronic illness and may inform interventions tailored to meet individuals' needs and improve health outcomes.
| S-EPMC4891247 | biostudies-literature
Project description:BackgroundThere is increasing recognition that chronic illness management (CIM) is not just an individual but a collective process where social networks can potentially make a considerable contribution to improving health outcomes for people with chronic illness. However, the mechanisms (processes, activities) taking place within social networks are insufficiently understood. The aim of this review was to focus on identifying the mechanisms linking social networks with CIM. Here we consider network mechanisms as located within a broader social context that shapes practices, behaviours, and the multiplicity of functions and roles that network members fulfil.MethodsA systematic search of qualitative studies was undertaken on Medline, Embase, and Web for papers published between 1st January 2002 and 1st December 2013. Eligible for inclusion were studies dealing with diabetes, and with conditions or health behaviours relevant for diabetes management; and studies exploring the relationship between social networks, self-management, and deprivation. 25 papers met the inclusion criteria. A qualitative metasynthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified were: 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These translated into line of argument synthesis in which three network mechanisms were identified. These were network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in CIM, and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support.ConclusionsCIM policy and interventions could be extended towards: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships and CIM environments; maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.
| S-EPMC4223639 | biostudies-literature
Project description:ObjectiveFamily caregiving is an important public health issue, particularly with the aging population. In recent years, mobile health (mHealth) technology has emerged as a potential low-cost, scalable platform to address caregiver support needs, and thereby alleviate the burden on caregivers. This study sought to examine the support needs of family caregivers in their lived experiences of outpatient care to inform the development of a future mHealth intervention.Materails and methodsWe conducted 20 semi-structured interviews in 2 outpatient hematopoietic cell transplant (HCT) clinics at a large academic medical center in the Midwestern United States. A thematic analysis was performed to define emerging themes.ResultsQualitative data analysis identified 5 primary themes that HCT caregivers faced: (I) lifestyle restrictions due to the patient's immunocompromised state; (II) Unmet needs due to limitations in the current resources, including unfamiliar medical tasks without necessary trainings; and (III) caregivers' adaptive strategies, including reformation of social relationships with family and friends. Based on these findings, we suggest 3 design considerations to guide the development of a future mHealth intervention.ConclusionsThe findings herein captured the family caregiver's lived experiences during outpatient care. There was broad agreement that caregiving was challenging and stressful. Thus, effective and scalable interventions to support caregivers are needed. This study provided data to guide the content and design of a future mHealth intervention in the outpatient setting.
| S-EPMC7969961 | biostudies-literature
Project description:ObjectiveTo explore experiences of social support needs among South Asian Muslim patients with life-limiting illness, living in Scotland, who are parents of young children.DesignSecondary analysis of data from a multiperspective, longitudinal Scottish study involving in-depth semistructured interviews with patients, their nominated carers and healthcare professionals. Data were analysed using interpretive phenomenological analysis.SettingEdinburgh, Scotland.ParticipantsSouth-Asian Muslim patients with life-limiting illness with children under the age of 18 (n=8), their carer (n=6) and their healthcare professional.Main outcome measuresAccess and provision of social support in palliative care.ResultsOpen-ended qualitative interviews identified four main themes: (1) parental sadness over being unable to provide tangible support; (2) parental desire to continue to provide emotional support; (3) limited availability of informal social support networks; and (4) differing perspectives between healthcare professionals and patients on patient access to social support sources, with a subtheme being the capacity of male carers to provide social support. South-Asian parents at the end of life had limited access to extended-network support. Gender roles appeared as challenging for healthcare providers who at times overestimated the amount of support a female carer could provide and underestimated the amount of support male carers provided. Implications for practice include the need for greater awareness by healthcare providers of the social support needs of ethnic minority and migrant parents with life-limiting illnesses and especially an awareness of the importance of the role of male and female carers. Further research is needed to explore how the timing of migration impacts the need for and availability of tangible and emotional informal social support among ethnic minority parents with life-limiting illness.
| S-EPMC3918973 | biostudies-literature
Project description:Poor sleep quality is a major concern and a highly prevalent symptom in fibromyalgia. We aimed to develop a metasynthesis of qualitative studies to assess how people diagnosed with fibromyalgia experience and manage poor sleep quality following the concepts of the Symptom Management Theory. The principles of metasynthesis established by Sandelowski and Barroso were utilized. A pre-planned comprehensive search was implemented in PubMed, Scopus, ISI WebofScience, and Cinahl Plus databases. The methodological quality was assessed following the CASP Qualitative Checklist. The findings of the studies were subjected to a metasummary and a metasynthesis. Seventeen studies were included in the metasynthesis. Two overarching themes were pre-established: (1) experience of poor sleep quality in Fibromyalgia and (2) poor sleep quality management strategies in Fibromyalgia. Four sub-themes emerged from the results: (1) evaluation of poor sleep quality, (2) response to poor sleep quality, (3) management strategies to favor sleep, and (4) managing the consequences of a sleepless night. Poor sleep quality is a severe and disabling symptom that negatively impacts the general health status of people diagnosed with FM. Prescribed treatments are commonly seen as ineffective and self-management strategies are a last resort and do not show beneficial effects.
| S-EPMC7763602 | biostudies-literature
Project description:Nurses who care for patients with life-limiting illness operate at the interface of family caregivers (FCGs), patients, and prescribers and are uniquely positioned to guide late-life medication management, including challenging discussions about deprescribing. The study objective was to describe nurses' perspectives about their role in hospice FCG medication management. Content analysis was used to analyze qualitative interviews with nurses from a parent study exploring views on medication management and deprescribing for advanced cancer patients. Ten home and inpatient hospice nurses, drawn from 3 hospice agencies and their referring hospital systems in New England, were asked to describe current practices of medication management and deprescribing and to evaluate a pilot tool to standardize hospice medication review. Analysis of the 10 interviews revealed that hospice nurses are receptive to a standardized approach for comprehensive medication review upon hospice transition and responded favorably to opportunities to discuss medication discontinuation with FCGs and prescribers. Effective framing for discussions included focus on reducing harmful and nonessential medications and reducing caregiver burden. Results indicate that nurses who care for hospice-eligible and enrolled patients are willing to discuss deprescribing with FCGs and prescribers when conversations are framed around medication harms and their impact on quality of life.
| S-EPMC7561076 | biostudies-literature
Project description:Caregivers of patients often provide key support for patients after hospitalization. This qualitative metasynthesis describes caregiver perspectives about care coordination for patients discharged from the hospital. A literature search of Ovid Medline and CINAHL completed on May 23, 2018, identified 1,546 studies. Twelve articles were included in the final metasynthesis. Caregiver perspectives about care coordination were compiled into overall themes. A subanalysis of studies in which patients were discharged with home health services was completed. Five main themes emerged related to caregiver perspectives on care coordination after hospitalization: (a) Suboptimal access to clinicians after discharge, (b) Feeling disregarded by clinicians, (c) Need for information and training at discharge, (d) Overwhelming responsibilities to manage appointments and medications, and (e) Need for emotional support.Findings from this metasynthesis suggest the need for clinicians to engage with caregivers to provide support, training, and communication after hospital discharge.
| S-EPMC7124970 | biostudies-literature
Project description:BackgroundFor patients with noncommunicable diseases (NCDs; eg, heart failure [HF] and colorectal cancer [CRC]), eHealth interventions could meet their posthospital discharge needs and strengthen their ability to self-manage. However, inconclusive evidence exists regarding how to design eHealth services to meet the complex needs of patients. To foster patient acceptability and ensure the successful development and implementation of eHealth solutions, it is beneficial to include different stakeholders (ie, patients and health care professionals) in the design and development phase of such services. The involvement of different stakeholders could contribute to ensuring feasible, acceptable, and usable solutions and that eHealth services are developed in response to users' supportive care needs when transitioning to home after hospitalization. This study is the first step of a larger complex intervention study aimed at meeting the postdischarge needs of 2 NCD populations.ObjectiveThis study aimed to explore the perspectives of patients with HF and CRC and health care professionals on patient self-management needs following hospital discharge and investigate how a future nurse-assisted eHealth service could be best designed to foster patient acceptability, support self-management, and smooth the transition from hospital to home.MethodsA qualitative, explorative, and descriptive approach was used. We conducted 38 semistructured interviews with 10 patients with HF, 9 patients surgically treated for CRC with curative intent, 6 registered nurses recruited as nurse navigators of a planned eHealth service, and 13 general practitioners experienced in HF and CRC treatment and follow-up care. Patients were recruited conveniently from HF and CRC outpatient clinics, and the nurses were recruited from the cardiology and gastro-surgical departments at a university hospital in the southwest of Norway. The general practitioners were recruited from primary care in surrounding municipalities. Semistructured interview guides were used for data collection, and the data were analyzed using thematic analysis.ResultsIn total, 3 main themes were derived from the data analysis: expecting information, reassurance, and guidance when using eHealth for HF and CRC self-management; expecting eHealth to be comprehensible, supportive, and knowledge promoting; and recognizing both the advantages and disadvantages of eHealth for HF and CRC self-management. The data generated from this interview study depicted the diverse needs for self-management support of patients with CRC and HF after hospital discharge. In addition, valuable suggestions were identified regarding the design and content of the eHealth service. However, participants described both possible advantages and disadvantages of a remote eHealth service.ConclusionsThis study is the first step in the development of an eHealth service for posthospitalization self-management support for long-term illnesses. It concerns patients' supportive care needs and user requirements of an eHealth service. The findings of this study may add value to the planning and development of eHealth interventions for patients with NCDs.
| S-EPMC9941902 | biostudies-literature
Project description:IntroductionA major part of diabetes management involves patients' self-management. Poor self-management increases the risk of complications from the condition. Good self-management requires appropriate and adequate education and caregiver support, typically provided through structured diabetes education programmes. Education on various topics, including self-management, is a key component of diabetes management services in Ghana. However, challenges such as limited knowledge, economic constraints and sociocultural factors hinder self-management practices. We explored the self-management education (SME), practice and support needs of adults with type-2 diabetes (T2D) at the Keta Municipal Hospital.Research design and methodsThis phenomenological study involved 16 adults living with T2D and two healthcare providers in the Keta Municipality of Ghana. Data were collected through in-depth and expert interviews using interview guides. Interpretative phenomenological analysis was employed to analyse the data using NVivo V.12.ResultsSME was provided within an hour during the first section of the monthly diabetes clinic covering dietary needs and restrictions, physical exercises, adherence to medication and wound prevention and care. SME needs were individualised SME and extension of education to the general population. The participants practised self-management activities. They attributed their improved practices to both the general group education and the individualised goals and input received during individual counselling sessions. Motivators for self-management were cues from negative health outcomes, wanting to survive the condition for a long time and SME received. Challenges to self-management entailed job roles, insufficient medication dosages and unavailability of medication at the hospital during review visits.ConclusionsThe study suggests that individualised SME and caregiver support may enhance self-management practices and outcomes. This underscores the significance of considering patient-specific factors and support systems when designing effective diabetes management strategies. The provision of comprehensive SME, including group and individual sessions, along with the utilisation of visual aids, can contribute to improved self-management outcomes.
| S-EPMC11816688 | biostudies-literature
Project description:BackgroundAs the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada.MethodsA qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description.ResultsWe identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation.ConclusionThis study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.
| S-EPMC10770879 | biostudies-literature