scholarly journals Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

2021 ◽  
Vol 18 (14) ◽  
pp. 7294
Author(s):  
Patricia Marín-Maicas ◽  
Silvia Corchón ◽  
Leire Ambrosio ◽  
Mari Carmen Portillo
Keyword(s):  
Family Caregivers ◽  
Scoping Review ◽  
Self Management ◽  
Narrative Synthesis ◽  
Long Term Conditions ◽  
Family Perspective ◽  
The Family ◽  
The Impact ◽  
Different Levels

(1) Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective. (2) Methods: A scoping review and narrative synthesis were conducted using a systematic methodology in MEDLINE, CINAHL, Web of Science and PsycINFO, in English and Spanish, including evidence from 2018. (3) Results: A total of 28 articles were included in the review. Acceptance, coping, self-management, integration, and adjustment were key attributes in the process of living with LTCs from the perspective of family caregivers that interrelated in a dynamic way through different mechanisms: being aware of the changing situation, personal networks, information and education, personal conditions, attitude to life and communication. (4) Conclusions: The five attributes that comprise living with LTCs from the perspective of the family caregiver are closely connected of to those of patients living with LTCs; however, self-management and integration have a different meaning and application.

scholarly journals Digital Technologies for Children and Parents Sharing Self-Management in Childhood Chronic or Long-Term Conditions: A Scoping Review

Children ◽  
2021 ◽  
Vol 8 (12) ◽  
pp. 1203
Author(s):  
Jill Edwards ◽  
Jenny Waite-Jones ◽  
Toni Schwarz ◽  
Veronica Swallow
Keyword(s):  
Scoping Review ◽  
Mobile Apps ◽  
Digital Technologies ◽  
Self Management ◽  
Management Skills ◽  
Long Term Conditions ◽  
Future Technology ◽  
Parents And Children ◽  
Children And Parents

Worldwide, the prevalence of chronic (or long-term) conditions in children and young people from birth to 18 years (children) is increasing. Promoting competent and effective self-management skills early in the trajectory is important to improve adherence to treatment and optimise quality of life. Successful self-management, therefore, requires parents and children who are developmentally able to develop a range of complex skills, including the use of digital technologies. This scoping review aimed to identify primary research investigating digital technologies for children and parents sharing self-management in childhood chronic illnesses. A comprehensive search of electronic databases was conducted. Nineteen papers were included, assessed for quality and methodological rigour using the Hawker tool and thematically analysed. Three themes were identified: (i) the feasibility and acceptability of using technology, (ii) the usability of technologies and (iii) the effect of technologies on adherence and self-management skills. The results indicate that technologies such as mobile apps and websites can assist the management of long-term conditions, are an acceptable method of delivering information and can promote the development of effective self-management skills by parents and children. However, future technology design must include children and parents in all stages of development.

scholarly journals Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e041873
Author(s):  
Jessica Laura Rees ◽  
Alexandra Burton ◽  
Kate R Walters ◽  
Monica Leverton ◽  
Penny Rapaport ◽  
...  
Keyword(s):  
Physical Health ◽  
Healthcare Professionals ◽  
Best Interests ◽  
Self Management ◽  
Family Carers ◽  
Long Term Conditions ◽  
Care Network ◽  
People With Dementia ◽  
The Impact

ObjectivesTo explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.DesignSecondary thematic analysis of 82 semi-structured interviews.SettingCommunity settings across the United Kingdom.Participants11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.ResultsWe identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.ConclusionThe process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.

scholarly journals Self-Management Interventions in Patients with Long-Term Conditions: A Structured Review of Approaches to Reporting Inclusion, Assessment, and Outcomes in Multimorbidity

2014 ◽  
Vol 4 (1) ◽  
pp. 37-45 ◽  
Author(s):  
Cassandra Kenning ◽  
Peter A. Coventry ◽  
Peter Bower
Keyword(s):  
Rapid Development ◽  
Healthcare Delivery ◽  
Self Management ◽  
Chronic Obstructive ◽  
Long Term Conditions ◽  
Management Interventions ◽  
Cochrane Reviews ◽  
Secondary Analyses ◽  
The Impact

Background Multimorbidity has many potential implications for healthcare delivery, but a particularly important impact concerns the validity of trial evidence underpinning clinical guidelines for individual conditions. Objective To review how authors of published trials of self-management interventions reported inclusion criteria, sample descriptions, and consideration of the impact of multimorbidity on trial outcomes. Methods We restricted our analysis to a small number of exemplar long-term conditions: type 2 diabetes mellitus, coronary heart disease, and chronic obstructive pulmonary disease. We focussed our search on published Cochrane reviews. Data were extracted from the trials on inclusion/exclusion, sample description, and impact on outcomes. Results Eleven reviews consisting of 164 unique trials were identified. Sixty percent of trials reported excluding patients with forms of multimorbidity. Reasons for exclusion were poorly described or defined. Reporting of multimorbidity within the trials was poor, with only 35% of trials reporting on multimorbidity in their patient samples. Secondary analyses, exploring the impact of multimorbidity, were very rare. Conclusions The importance of multimorbidity in trials is only going to become more important over time, but trials often exclude patients with multimorbidity, and reporting of multimorbidity in trials including such patients is generally poor. This limits judgements about the external validity of the results for clinical populations. A consistent approach to the conduct and reporting of secondary analyses of the effects of multimorbidity on outcomes, using current best-practice guidance, could lead to a rapid development of the evidence base.

Mandatory Reporting and Adolescent Sexual Assault

2021 ◽  
pp. 152483802110302
Author(s):  
Caroline Bailey ◽  
Jessica Shaw ◽  
Abril Harris
Keyword(s):  
Sexual Assault ◽  
Sexual Violence ◽  
Key Words ◽  
Scoping Review ◽  
Well Being ◽  
Mandatory Reporting ◽  
Age Group ◽  
Long Term Consequences ◽  
The Impact

Adolescents experience alarmingly high rates of sexual violence, higher than any other age-group. This is concerning as sexual violence can have detrimental effects on teens’ personal and relational well-being, causing long-term consequences for the survivor. Still, adolescents are hesitant to report the assault or seek out services and resources. When an adolescent survivor does seek out services, they may interact with a provider who is a mandatory reporter. This scoping review sought to synthesize the current U.S.-based research on the role, challenges, and impact of mandatory reporting (MR) in the context of adolescent sexual assault. Database searches using key words related to MR, sexual assault, and adolescence identified 29 peer-reviewed articles. However, none of these articles reported on empirical investigations of the phenomenon of interest and instead consisted of case studies, commentaries, and position papers. The scoping review was expanded to provide a lay of the land of what we know about the intersection of adolescent sexual assault and MR. Results of the review indicate that though implemented broadly, MR policies vary between individuals, organizations, and states and have historically been challenging to implement due to this variation, conflicts with other laws, tension between these policies and providers’ values, and other factors. Based on the available literature, the impact of MR in the context of adolescent sexual assault is unknown. There is a critical need for research and evaluation on the implementation and impact of MR policies, especially in the context of adolescents and sexual violence.

scholarly journals Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review

2021 ◽  
pp. 152261
Author(s):  
Siobhan T. O'Dwyer ◽  
Astrid Janssens ◽  
Anna Sansom ◽  
Lucy Biddle ◽  
Becky Mars ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Scoping Review

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

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