Family Caregiver Support of Patient Self-Management During Chronic, Life-Limiting Illness: A Qualitative Metasynthesis.
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SUBMITTER: Schulman-Green D
PROVIDER: S-EPMC8114560 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:To identify factors that may serve as facilitators and barriers to self-management described by adults living with chronic illness by conducting a qualitative metasynthesis.Self-management is an individuals' active management of a chronic illness in collaboration with their family members and clinicians.Qualitative metasynthesis.We 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.Sandelowsi and Barroso approach to qualitative metasynthesis: literature search; quality appraisal; analysis and synthesis of findings.Collectively, 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).Understanding 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: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:ObjectivePeer support models, where an individual has a specific illness or lifestyle experience and supports others experiencing similar challenges, have frequently been used in different fields of healthcare to successfully engage hard-to-reach groups. Despite recognition of their value, the impact of these roles on the peer has not been systematically assessed. By synthesising the qualitative literature we sought to review such an impact, providing a foundation for designing future clinical peer models.MethodsSystematic review and qualitative metasynthesis of studies found in Medline, CINAHL or Scopus documenting peer worker experiences.Results1,528 papers were found, with 34 meeting the criteria of this study. Findings were synthesised to reveal core constructs of reframing identity through reciprocal relations and the therapeutic use of self, enhancing responsibility.ConclusionsThe ability of the Peer Support Worker to actively engage with other marginalised or excluded individuals based on their unique insight into their own experience supports a therapeutic model of care based on appropriately sharing their story. Our findings have key implications for maximising the effectiveness of Peer Support Workers and in contributing their perspective to the development of a therapeutic model of care.
| S-EPMC4627791 | biostudies-literature
Project description:BackgroundSupport for patient self-management is an accepted role for health professionals. Little evidence exists on the appropriate basis for the role of health professionals in achieving optimum self-management outcomes. This study explores the perceptions of people with type 2 diabetes about their self-management strategies and how relationships with health professionals may support this.MethodsFour focus groups were conducted with people with type 2 diabetes: two with English-speaking and one each with Turkish and Arabic-speaking. Transcripts from the groups were analysed drawing on grounded hermeneutics and interpretive description.ResultsWe describe three conceptually linked categories of text from the focus groups based on emotional context of self management, dominant approaches to self management and support from health professionals for self management. All groups described important emotional contexts to living with and self-managing diabetes and these linked closely with how they approached their diabetes management and what they looked for from health professionals. Culture seemed an important influence in shaping these linkages.ConclusionOur findings suggest people construct their own individual self-management and self-care program, springing from an important emotional base. This is shaped in part by culture and in turn determines the aims each person has in pursuing self-management strategies and the role they make available to health professionals to support them. While health professionals' support for self-care strategies will be more congruent with patients' expectations if they explore each person's social, emotional and cultural circumstances, pursuit of improved health outcomes may involve a careful balance between supporting as well as helping shift the emotional constructs surrounding a patient life with diabetes.
| S-EPMC2596123 | biostudies-literature
Project description:BackgroundFor caregivers of people with heart failure, addressing a range of care recipient needs at home can potentially be burdensome, but caregivers may also gain meaning from caregiving. The Caregiver Support Program, a multicomponent strengths-based intervention, is designed to improve outcomes of heart failure caregivers.Objectives1) Test the feasibility and gauge an initial effect size of the Caregiver Support Program to improve caregiver quality of life (primary outcome), and fatigue and burden (secondary outcomes) from baseline to 16 weeks, 2) test whether fatigue and caregiver burden are associated with objective measures of resilience (sweat inflammatory cytokines (Il-6 and IL-10) and self-reported resilience, 3) evaluate changes in heart rate variability, IL-6 and IL-10, pre- and post-intervention.MethodsThis is a single-blind, two group, waitlist control trial. Eligible caregivers are 1) ≥ 18 years, 2) English speaking, 3) live with the person with heart failure or visit them at least 3 days per week to provide care, 4) provide support for at least 1 instrumental activity of daily living (IADL), 5) live within a 1 h driving radius of the Johns Hopkins Hospital, and 6) the care-recipient has been hospitalized within the last 6 months. Trial participants are randomized into the immediate intervention (n = 24) or waitlist control group (n = 24). Data collection is at baseline, 16 weeks, and 32 weeks.ConclusionThe Caregiver Support program has the potential to increase quality of life and decrease fatigue and caregiver burden for caregivers of people with heart failure and multiple co-morbidities.
| S-EPMC9118505 | biostudies-literature
Project description:Self-management support (SMS) initiatives have been hampered by insufficient attention to underserved and disadvantaged populations, a lack of integration between health, personal and social domains, over emphasis on individual responsibility and insufficient attention to ethical issues. This paper describes a SMS framework that provides guidance in developing comprehensive and coordinated approaches to SMS that may address these gaps and provides direction for decision makers in developing and implementing SMS initiatives in key areas at local levels. The framework was developed by researchers, policy-makers, practitioners and consumers from 5 English-speaking countries and reviewed by 203 individuals in 16 countries using an e-survey process. While developments in SMS will inevitably reflect local and regional contexts and needs, the strategic framework provides an emerging consensus on how we need to move SMS conceptualization, planning and development forward. The framework provides definitions of self-management (SM) and SMS, a collective vision, eight guiding principles and seven strategic directions. The framework combines important and relevant SM issues into a strategic document that provides potential value to the SMS field by helping decision-makers plan SMS initiatives that reflect local and regional needs and by catalyzing and expanding our thinking about the SMS field in relation to system thinking; shared responsibility; health equity and ethical issues. The framework was developed with the understanding that our knowledge and experience of SMS is continually evolving and that it should be modified and adapted as more evidence is available, and approaches in SMS advance.
| S-EPMC5914450 | biostudies-other