Experience Of Caring For Someone Research Articles

Caregiver approaches, resiliencies, and experiences raising individuals with fetal alcohol spectrum disorder: A study protocol paper.

Fetal alcohol spectrum disorder (FASD) is a complex neurodevelopmental disability characterized by a range of brain- and body-based difficulties which, when left unsupported, can lead to experiences of significant adversity across the lifespan. Caregivers of individuals with FASD play a critical role in advocating and supporting healthy outcomes for individuals with FASD, and most caregiver research to date has been focused on stressors and challenges. Very few studies have been conducted to systematically capture the full experience of caring for someone with FASD across the lifespan, including perspectives, concerns, as well as strengths and successes of caregivers and their families. Collaborative research with individuals with living experience is essential for understanding needs and supporting healthy outcomes for individuals with FASD and their families, and caregivers are in a unique and important position to provide perspectives and share living expertise. Therefore, the current study was developed collaboratively with caregivers and researchers to capture the many aspects of caregivers' contexts, concerns, needs, and successes in raising individuals with FASD. In this study protocol paper, we describe the rationale, development, design, and anticipated impacts of this research. The goal of this paper is to share information about why and how this study is being done, and potentially guide other teams in developing similar projects to better understand caregivers' experiences, needs, and successes. Documenting and giving voice to the breadth and depth of caregiver experiences will help us to tailor services and supports, develop resources, stimulate knowledge translation based in resilience and protective factors, guide future studies, and inform evidence-based policy initiatives.

Exploring the Safewards Programme to Reduce Restrictive Practices in Residential Aged Care: Protocol for a Pilot and Feasibility Study.

Restrictive practice use in residential aged care homes internationally is unacceptably high. Although policies and legislation mandate the reduction or elimination of restrictive practices, there remains a gap in knowledge regarding strategies that have been effective in achieving a sustained reduction in restraint use. There is an urgent need to identify effective and feasible interventions that aged care staff can implement in everyday practice to reduce restraint use. Safewards is an evidence-based programme that has demonstrated effectiveness in reducing conflict and restrictive practice use in inpatient psychiatric settings and has the potential to address the issue of restraint use in aged care homes. This study aims to evaluate the feasibility of Safewards in reducing restrictive practices in residential aged care homes. This pilot and feasibility study will adopt a mixed methods process and outcomes evaluation. Safewards will be implemented in two Australian residential aged care homes. The Reach, Effectiveness, Adoption, Implementation and Maintenance framework will be used to evaluate implementation outcomes. Additionally, the Consolidated Framework for Implementation Research will be used to guide qualitative data collection (including semi-structured interviews with residents/family members, aged care leaders and staff) and explain the facilitators and barriers to effective implementation. This study will provide pilot evidence on the feasibility of the Safewards programme in residential aged care homes. Understanding the processes and adaptations for implementing and evaluating Safewards in residential aged care will inform a future trial in aged care to assess its effectiveness. More broadly, the findings will support the implementation of an international aged care policy of reducing restrictive practices in residential aged care. A person with lived experience of caring for someone with dementia is employed as a Safewards facilitator and is a member of the steering committee. Residents and family members will be invited to participate in the project steering committee and provide feedback on their experience of Safewards. ACTRN12624000044527.

“I don't know how, if, it's ever going to end”: narratives of caring for someone with an enduring eating disorder

BackgroundFamilies and carers are pivotal in supporting loved ones experiencing eating disorders. This role can bring immense distress and burden, yet the experience of caring for someone with an enduring eating disorder has had minimal research focus. Thus, the purpose of this study is to give voice to carers empowering their stories to increase awareness and understanding, which could inform support to carers and consequently people with a lived and/or living experience of eating disorders.MethodsSemi-structured interviews were conducted with 9 carers supporting individuals who had been experiencing an eating disorder for 7 or more years. Data were collected and analysed using narrative inquiry approach.ResultsCarers’ narratives revealed feelings of guilt and personal failure; a profound sense of disillusion with current treatment approaches; and immense grief and anguish. As they negotiated a tenuous relationship with hope and the uncertainty of their loved one’s future, carers spoke to a complex myriad of feelings of acceptance, letting go, and forging on.ConclusionCarers deserve to have their voices heard where they are too often silenced. Their narratives provide an urgent call for transformation in our treatments for eating disorders and further involvement of carers within the treatment journey, and their lived experience perspectives have great potential to guide this endeavour.Level of EvidenceLevel V, qualitative interviews.

Between us: Facilitated decision‐making in the relational experience of profound intellectual disability

AbstractThis article situates an analysis of facilitated decision‐making in the lived relational experience of caring for someone with a profound intellectual disability. Drawing from the experiences of a father and daughter residing in Boston, Massachusetts, I highlight the emotional dynamics and expressions of ableism that reverberate through social institutions and intersubjective relationships in shaping actions and practices around decision‐making support. These ubiquitous encounters, rooted in shared relational histories, bring into focus the affective grounds and embodied motivations that inform the practice of facilitated decision‐making within public spaces and systems. In the context of this article, these decisions are geared toward carving out a place of belonging, a goal beset with uncertainty. By demonstrating that disability is a relational experience and that decision‐making is an embodied evaluative process, deeply entwined with social and communicative practices, I aim to show what this practice looks like in the thick of everyday moral life.

The lived experience of caring for someone with bipolar disorder: A qualitative study.

Being a close family or friend of someone with bipolar disorder (BD) can lead to experiences of increased stress, anxiety and depressive symptoms related to the burden of caring. However, the lived experience of being a carer for a person with BD has not received significant research attention. This study aimed to gain further insight into the experiences of individuals in an informal caring role for someone with BD and determine what additional information and support these people need to take care of both themselves and the person they are caring for. Fifteen qualitative interviews were carried out with carers discussing their lived experiences with utilising coping strategies and supporting someone with BD. Following the interviews, thematic analysis was used to identify five key themes. These themes were: Separation of the person and the disorder, carer health and coping strategies, unpredictability and variability of symptoms, carer disillusionment and silencing, and story sharing and support needs. Overall, the findings highlighted the need for increased in-person and online support specifically tailored for carers with loved ones experiencing BD.

Mixed-Methods Study on Caregiver Strain, Quality of Life, and Perceived Health.

Background:Caring for someone with dementia is associated with negative and positive experiences. There is little evidence based on large datasets.Objective:To present data around the experience of caring for someone with dementia, to identify support (emotional and practical) needs, and inform future service provision.Methods:A mixed-methods study embedded in the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) Randomized Controlled Trial. We administered questionnaires on strain, quality of life (QoL), and perceived health to 301 caregivers and assessment of cognitive performance, depression, anxiety, and disability in activities of daily living to 301 participants with dementia. Data were analyzed through descriptive and modelling statistics. A subsample of 20 patient-caregiver dyads were qualitatively interviewed. Data around caregivers’ experience of providing care were extrapolated and analyzed through inductive thematic analysis.Results:There were significant negative associations between caregiver strain and QoL (p < 0.01) and between caregiver age and QoL (p < 0.01), and significant positive associations between caregiver strain and disability (p < 0.01), cognitive impairment (p < 0.01), depression (p < 0.05), and anxiety of the person with dementia (p < 0.05). Older caregivers reported a lack of support, reinforced by their reluctance to seek help. All caregivers reported contradictory emotions associated with caring and accumulation of strain over time.Conclusion:While there is recognition that it is essential to support caregivers, dedicated intervention programs, and support strategies to respond to the needs of older caregivers are still needed.

When Ambiguous Loss Becomes Ambiguous Grief: Clinical Work with Bereaved Dementia Caregivers.

The experience of caring for someone with dementia can be heartbreaking. The losses inherent to caregiving itself can be difficult to reconcile after the death of a person with dementia, causing challenges in the bereavement stage. Although there is often significant social support to help people process the death of someone close to them, clinicians can struggle to help bereaved dementia caregivers integrate their ambiguous losses from caregiving, such as loss of roles, functions, and relationships, into a postdeath bereavement process. Many socioeconomic, personality, and family functioning factors impact an individual caregiver's experience, and there are more global influences from the nature of dementia caregiving itself that must be understood to best support a caregiver. Using the lens of the dementia grief model and examples from a case study, this article seeks to illustrate the dynamics inherent in integrating ambiguous losses following the death of a person from dementia, and it proposes clinical goals for working effectively with this population.

NATIONAL QUESTIONNAIRE SURVEY ON ADVANCE CARE PLANNING IN JAPAN

AbstractThe Japanese Ministry of Health, Labor and Welfare conducts a national questionnaire survey on end-of-life care every five years. The subjects were among general population, doctors, nurses, and administrators in long-term care institutions. The survey focuses on preferences for future medical treatment and one’s desired place to receive care when becoming terminally ill. The latest survey, conducted in December 2017, defined the concept of advance care planning (ACP) for the first time and included questions related to ACP. The preliminary analysis found that people who are 65 years and older, who are female, and who have experience of caring for someone are more likely to have engaged in ACP. I will present the summary findings from the survey including the current status of ACP, factors associated with ACP, and perspectives toward ACP among the general population and health care providers in Japan.

A web-based clinical decision tool to support treatment decision-making in psychiatry: a pilot focus group study with clinicians, patients and carers

BackgroundTreatment decision tools have been developed in many fields of medicine, including psychiatry, however benefits for patients have not been sustained once the support is withdrawn. We have developed a web-based computerised clinical decision support tool (CDST), which can provide patients and clinicians with continuous, up-to-date, personalised information about the efficacy and tolerability of competing interventions. To test the feasibility and acceptability of the CDST we conducted a focus group study, aimed to explore the views of clinicians, patients and carers.MethodsThe CDST was developed in Oxford. To tailor treatments at an individual level, the CDST combines the best available evidence from the scientific literature with patient preferences and values, and with patient medical profile to generate personalised clinical recommendations. We conducted three focus groups comprising of three different participant types: consultant psychiatrists, participants with a mental health diagnosis and/or experience of caring for someone with a mental health diagnosis, and primary care practitioners and nurses. Each 1-h focus group started with a short visual demonstration of the CDST. To standardise the discussion during the focus groups, we used the same topic guide that covered themes relating to the acceptability and usability of the CDST. Focus groups were recorded and any identifying participant details were anonymised. Data were analysed thematically and managed using the Framework method and the constant comparative method.ResultsThe focus groups took place in Oxford between October 2016 and January 2017. Overall 31 participants attended (12 consultants, 11 primary care practitioners and 8 patients or carers). The main themes that emerged related to CDST applications in clinical practice, communication, conflicting priorities, record keeping and data management. CDST was considered a useful clinical decision support, with recognised value in promoting clinician-patient collaboration and contributing to the development of personalised medicine. One major benefit of the CDST was perceived to be the open discussion about the possible side-effects of medications. Participants from all the three groups, however, universally commented that the terminology and language presented on the CDST were too medicalised, potentially leading to ethical issues around consent to treatment.ConclusionsThe CDST can improve communication pathways between patients, carers and clinicians, identifying care priorities and providing an up-to-date platform for implementing evidence-based practice, with regard to prescribing practices.

What would encourage help-seeking for memory problems among UK-based South Asians? A qualitative study

ObjectivesPeople from Minority Ethnic groups tend to present late to dementia services, often in crisis. Culture-specific barriers to help-seeking seem to underlie this. We sought to determine these barriers to...

Abstract NS15: Adult Daughters’ Problems in Caring for Parents

Background: Women provide most of the unpaid care to family members. Transitioning from the role of adult daughter to caregiver can be very stressful and unsettling. Purpose: Guided by Friedemann’s framework of systemic organization , the purpose of this descriptive secondary data analysis was to examine problems reported by adult daughters in the first year of caring for a parent with a stroke. Problems in caring can lead to poor health/ incongruence . Method: An IRB approved randomized controlled trial conducted with 73 adult caregivers in Ohio and Michigan examined the experience of caring for someone with stroke. Open-ended questions were included in bimonthly telephone interviews asking caregivers to recall their problems in caring over the past two weeks. For this secondary data analysis, problems reported by only the adult daughters (n=13) were analyzed during two time periods (0-6 and 7-12 months) using Colaizzi’s rigorous method of content analysis. Results: The first theme of witnessing a parent’s condition centered on the adult daughter recognizing changes in their parents’ health condition and behavior (Friedemann’s process dimension of system maintenance ). This theme was consistently apparent throughout 12-months of caring. The second theme, balancing the challenges of the caregiver role , dealt with the struggles and adaption necessary for her new lifestyle of a caregiver ( system maintenance and individuation ).This theme was noticeable throughout the entire year, but more evident in the second 6-months. The final theme, feeling physically, emotionally, and mentally drained, involved problems associated with the overall exhaustion experienced by adult daughters ( system maintenance ). This theme was seen throughout the 1-year period, but more visible in the first 6-months of caring. Conclusions: The findings provide specific, theory-based themes of the adult daughters’ problems during that year of caring that could lead to incongruence in their lives. The information gleaned may offer nurses and other healthcare providers a clearer picture of the problems these daughters experience, leading to more targeted interventions, increased support, and ultimately improved overall health/ congruence for daughters.

Carers' experiences of dysphagia in people treated for head and neck cancer: a qualitative study.

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner's dysphagia, (3) the disconnect between carers' expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

Facilitating Change and Adaptation: The Experiences of Current and Bereaved Carers of Patients with Severe Chronic Obstructive Pulmonary Disease

Patients with severe chronic obstructive pulmonary disease (COPD) experience substantial symptom burden, psychological and social morbidity. The experience of this illness has an impact beyond the patient. This study seeks to understand the experiences and needs of family carers of people with severe COPD. Semistructured interviews were held with current and bereaved carers of people with severe COPD. Several areas of content were targeted in the interviews, including the experience of caring for someone with COPD, views of treatment and prognosis, information and communication needs, and the understanding of palliative care. Data were analyzed thematically. The carers' and bereaved carers' experiences and needs around COPD are best understood as a dynamic of change, recognition, and adaptation. Carers faced many changes as the patients' general condition deteriorated. These were changes in the nature of caring tasks, in their relationships, and their own expectations. Carers usually recognized change had happened and sought to adapt through new approaches, new equipment, a new stance of thinking, and in most cases, continued caring. Within this theme of change, recognition, and adaptation were a series of subthemes: (1) the impact of caring, (2) recognizing the role of the carer, and (3) the needs of the carer including their needs from palliative care services. The impact of caring borne by family carers is substantial and life changing. Health professionals may assist carers in their role through acknowledgement, facilitating recognition of the changes that have occurred (and their implications), and enabling creative adaptive responses for carers. Such assistance is likely to enhance the ability of carers to continue in this demanding role.

Étude exploratoire du vécu de la prise en charge des parents et de la fratrie de jeunes filles anorexiques

BackgroundAnorexia nervosa (AN) is a serious psychiatric disorder, which affects 0.3% of young people, with a high mortality rate. The impacts of AN on both the patient and their family are severe, as AN decreases the quality of life of the whole family, and increases dysfunctional family interactions. Providing families affected by AN with support to limit the impact of the disorder on the family is therefore critical. Importantly, the lack of consensus regarding treatments for AN is particularly painful for the patients and their relatives. This exploratory study focuses on the impact of treatments for AN on families in France. The main aim is to explore the experience of parents and siblings of individuals suffering from AN to gain a better understanding of the impact of the disorder and its treatment on the whole family. The second purpose is to identify directions for improving the support provided to patient and their relatives. MethodTwelve relatives of girls suffering from anorexia (6 mothers, 3 fathers and 3 siblings) were recruited within an association dedicated to the support of parents of individuals suffering from AN. Semi-structured interviews were conducted and thematic analysis was used to extract the meaningful themes. ResultsThe results highlight five distinct categories: long and ineffective treatments, family support (of lack thereof), involvement of the siblings, the need of guidance and the benefits of support groups. Treatments are stressful for family members who are negatively impacted by both the length of treatment and the slow rates of improvement. Relatives of individuals suffering from AN, particularly siblings, require greater support as they are generally excluded from the treatment process. Parents clearly express a need of guidance concerning the appropriate behavior to adopt with their daughters. Plus they highlight the benefits of talking with other parents. ConclusionOur exploration of the experience of the families of individuals suffering from AN provides targets for the improvement of the support provided to families. Findings highlight the need for information, guidance and sharing with other families. Relatives need to be provided with more information throughout the treatment process, from diagnosis to recovery. In addition, families were particularly interested in obtaining practical advice on the appropriate behaviors to adopt with their anorexic daughter or/and sister. Finally, our results stress the helpfulness of sharing the experience of caring for someone with AN with other families facing eating disorders, in order to decrease isolation and social stigma. This study contributes to the evidence of how AN deeply affects the entire family, with major consequences for parents and siblings. This study emphasizes the need to improve the support for relatives and their involvement in the care process, in order to limit the impact of AN on other family members and to promote recovery.

Exploring the carers experience of the symptoms of prion disease

BackgroundPrion diseases, also known as transmissible spongiform encephalopathies (TSE's) are a group of progressive neurodegenerative conditions for which there is no current treatment or cure. Human prion diseases include sporadic...

End of life care for people with dementia: the challenge for specialist palliative care

IntroductionThere are 613 661 people with dementia in England, rising to over a million by 2030, an increase of 72%. They should have the same access to palliative care as...

Undergraduate nursing student's attitudes towards caring for people with HIV/AIDS

The aim of this quantitative study was to determine the attitudes of Australian nursing students towards caring for people with HIV/AIDS. This research study was conducted among second year undergraduate nursing students at a university in South Australia, during August 2007. The survey tool consisted of six demographic questions and the AIDS Attitude Scale. This questionnaire was completed by 396 students, giving a response rate of 94.7%. The vast majority (95.7%) of students participating in this study demonstrated very positive attitudes towards caring for people with HIV/AIDS and only 4.3% demonstrated negative attitudes. No statistically significant differences were found in attitude score based on participants' age, gender, previous HIV/AIDS education, previous nursing experience or previous experience of caring for someone with HIV/AIDS. A statistically significant difference in AIDS attitude score was found in relation to participants' country/region of citizenship, with nursing students from China, East Asia, South East Asia, and Central Asia and Middle East having more negative attitudes than students from other countries/regions. As an increasing number of nursing students have been recruited to Australia from these countries/regions, nurse educators need to be aware of such differences when planning and delivering HIV/AIDS educational programs in tertiary institutions.

End-of-life care for older rural people: just being there

This paper discusses the experience of caring for someone over 65, with a terminal illness, in rural New Zealand. The narratives from seven participants offer some contextual understanding of complex lived realities, potentially informing future rural EoL care and contributing to contemporary goals of positive ageing and dying well. Positioning themselves as carers, rather than as rural people, the participants speak about similar issues, with diverging perspectives reflecting their different carer standpoints. Limited access to 24 hour support and specialist palliative care services, and negotiating complex needs are juxtaposed with the joys and rewards of caring. Ambivalence and conflict permeate the stories, reflecting a particular socio-historical moment as, caught between two paradigms of care, the participants vacillate between desiring the empathic, compassionate care of yesteryear and the benefits of modern medical technology. Overall however, therapeutic relationships unambiguously emerge as the most valued aspect of quality EoL care.

Commentary on McCaughan E &amp; McKenna H (2007) Never‐ending making sense: towards a substantive theory of the information‐seeking behaviour of newly diagnosed cancer patients. Journal of Clinical Nursing 16, 2096–2104

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Commentary on Jarvis A, Worth A and Porter M (2006) The experience of caring for someone over 75 years of age: results from a Scottish General Practice population. Journal of Clinical Nursing 15, 1450–1459

Commentary on Jarvis A, Worth A and Porter M (2006) The experience of caring for someone over 75 years of age: results from a Scottish General Practice population. <i>Journal of Clinical Nursing</i> 15, 1450–1459