Dataset Information

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

ABSTRACT: Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiver, there is a paucity of evidence that attempts to understand this phenomenon in depth. This study aimed to examine informal caregivers' reflections on, and accounts of, experiences of loneliness linked to their caregiving situation. As part of a cross-sectional, qualitative study, sixteen semi-structured interviews were conducted with 8 spousal caregivers, 4 daughters caring for a parent, 3 mothers caring for a child (or children), and 1 woman looking after her partner. The cared-for persons were suffering from a range of mental and physical health conditions (e.g., dementia, frailty due to old age, multiple sclerosis, depression, autism). Data were analyzed using an inductive thematic analysis. Experiences of loneliness were described by reference to a context of shrunken personal space and diminished social interaction caused by the restrictions imposed by the caregiving role. Loneliness was also articulated against a background of relational deprivations and losses as well as sentiments of powerlessness, helplessness, and a sense of sole responsibility. Social encounters were also seen to generate loneliness when they were characterized by some form of distancing. Though not all sources or circumstances of loneliness in caregivers are amenable to change, more opportunities for respite care services, as well as a heightened sensibility and social appreciation of caregivers' valued contributions could help caregivers manage some forms of loneliness.

SUBMITTER: Vasileiou K

PROVIDER: S-EPMC5395647 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

Vasileiou Konstantina K Barnett Julie J Barreto Manuela M Vines John J Atkinson Mark M Lawson Shaun S Wilson Michael M

Frontiers in psychology 20170419

Although providing care to a family member or friend may provide psychological benefits, informal (i.e., unpaid) caregivers also encounter difficulties which may negatively affect their quality of life as well as their mental and physical health. Loneliness is one important challenge that caregivers face, with this psychological state being associated with morbidity and premature mortality. Although previous research has identified loneliness as an issue associated with being an informal caregiv ...[more]

PMID: 28469589

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Project description:BackgroundInformal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT.ObjectiveThe main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life.MethodsFollowing a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach.ResultsFour themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite).ConclusionsMost of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.

Project description:Background:Many children in low and middle income countries (LMIC) are exposed to trauma. Contact with public services are a potential influence on parent-child reactions and coping post-trauma. Little is known about how caregivers perceive these interactions. Methods:The aim of this study was to explore caregivers' experiences of accessing and interacting with public services post-trauma and perceptions of needed improvements to public services in a LMIC context. Qualitative interviews were conducted with 20 female caregivers from a high-risk settlement in South Africa after child trauma exposure. Results:Three themes and seven sub-themes were identified regarding caregivers' perceptions of interactions with public services post-trauma. The key themes identified related to (1) communication and exchanges with law enforcement, (2) consequences of an under-resourced justice system and (3) importance of communication and empathy in the healthcare system. Interactions with police were often positive. However, caregivers explained that police-family communication post-trauma could be improved and may help to lessen caregiver anxiety and concerns for the child's safety post-trauma. Caregivers perceived the judicial system to be under-resourced as contact with the judicial system was often protracted and caused child anxiety and distress. Medical treatment was reportedly rushed, with extensive waiting times and little information provided to caregivers regarding the child's injuries or treatment. Some medical staff were perceived as unsympathetic during the child's treatment which was found to exacerbate caregiver and child distress post-trauma. Conclusions:This study provides insight into caregiver experiences of accessing public services following child trauma exposure in a high-risk LMIC context. Public services were perceived as oversubscribed and under-resourced and negative interactions often influenced caregiver responses and appraisals of child safety. Given the impact of poor interactions with public services on families post-trauma, additional research is needed to investigate feasible improvements to public services in LMIC.

Project description:BackgroundChildren experience multiple painful procedures when being cared for in emergency departments (EDs). Unfortunately, evidence-based interventions to manage such pain and distress are under-utilized across EDs. Caregivers are uniquely positioned and invested to advocate for the adaptation of such evidence into practice. Our objective was to gather information from caregivers of children experiencing procedural pain in the ED to inform the development of a novel, caregiver-focused knowledge translation (KT) tool.MethodsThe study design was qualitative description. Caregivers of children who underwent intravenous (IV) insertion or venipuncture in the pediatric ED at an urban tertiary care centre were interviewed. Thematic analysis was applied to the data. The TRanslating Emergency Knowledge for Kids (TREKK) Parent Advisory Group continuously informed this study, and provided input on interview guide development and piloting, data collection, analysis of the data, interpretation of the results, and development of next steps.ResultsInterviews revealed four major themes: 1) source of healthcare information; 2) delivering healthcare information; 3) communication with caregivers; and 4) procedure-related anxiety and long-term effects. Caregivers most valued receiving information directly from their healthcare provider. They also expressed that healthcare providers should direct information about the procedure to their child and identified strategies to involve children in their care. Caregivers wanted to be empowered to ask informed questions of their healthcare providers. Finally, caregivers reported negative experiences with procedures for their children, occurring mainly at non-pediatric centres.ConclusionsWe have identified core information needs for caregivers whose children are experiencing IV insertion or venipuncture. These results will form the foundation for the development of a KT tool that may empower caregivers to actively participate in their child's healthcare.

Project description:ObjectivesTo identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic.DesignA qualitative systematic literature review.Data sourcesEight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources.Study selectionEligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English.Data extraction and synthesisRetrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings.ResultsFourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope.ConclusionCarers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.

Dataset Information

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

Publications

Experiences of Loneliness Associated with Being an Informal Caregiver: A Qualitative Investigation.

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