Personal Care Experiences Research Articles

A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

We present a relationship-centred shared-decision-making (RCSDM)process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partnersand practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partnersand rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediateand in service to a larger therapeutic goal. They can be thought of as micro-decisionsand involve multiple practitioners, care partnersand patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partnersand practitioners based on our disorders of consciousness (DoC) research. To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disabilityand person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical dataand vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy,and scholarship and activism of disability advocates. Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual)and micro-decision moments (initiation, responseand closure). Relationships among patients, their care partnersand practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyseand disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Monitoring Persons’ Rights to Equal Care: Registered Nurses’ Experiences of Caring for People with Mental Ill-Health and Somatic Comorbidity in Psychiatric Outpatient Care

Persons with severe mental ill-health die early from preventable physical ill-health. Registered nurses in psychiatric outpatient care play a key role in improving persons’ physical health, and it is important to examine how they view their responsibility, their experiences of care, and the obstacles they meet in providing person-centred care. The purpose of this study was to explore registered nurses’ experiences of caring for persons with mental ill-health and somatic comorbidity in psychiatric outpatient care, using qualitative content analysis to analyze data from semi-structured interviews. The results show that these nurses monitored the person’s right to equal care, embraced the whole of the persons suffering, and dealt with unclear boundaries in care. This highlights the unique role that registered nurses play in psychiatric outpatient care via their ability to interpret symptoms and find ways to adapt care based on persons’ needs. Registered nurses consider physical health in all care and provide a link between psychiatric and somatic care. Together with mental health nurses at primary health care centers, they are key in reducing persons’ suffering. There is a need for structural and functional changes in line with person-centred care including collaboration both within and outside healthcare organizations.

Experiential peers cultivate a participation culture in youth justice

PurposeThe purpose of this viewpoint paper is to explore the concept of experiential peer support, which involves individuals who have lived experiences of using care and justice services. This paper discusses whether experiential peer support can contribute to developing a participatory culture in youth justice practice.Design/methodology/approachThis viewpoint paper will critically evaluate the relational power of experiential peers. Particular attention will be paid to the key components of relational practices by reflecting on ways to enhance the voice of the child within participatory and child first approaches. The paper draws on a range of evidence and research to explore whether inclusion of a lived experience perspective can foster participatory cultures.FindingsExperiential peers can create a participatory youth justice culture, which can positively impact on desistance for justice involved children.Research limitations/implicationsFurther research needs to be undertaken to extrapolate the key characteristics of effective experiential peer support. This includes discussion on whether recruitment of wounded healers into professional youth justice roles can enhance participation in youth justice settings and construct conditions for social growth to develop in youth justice practice.Originality/valueThe author of this viewpoint paper has personal experience of care, youth incarceration and professional experience of youth justice participation practice, providing a unique vantage point and contribution to the desistance and rehabilitation literature.

Registered Nurses' experiences of caring for persons with dementia expressing their sexuality.

BackgroundSexuality is an integral part of human beings and persons living with dementia still perceive negative attitudes from caregivers in this regard.AimThis study aimed to explore registered nurses' experiences of caring for persons with dementia living in nursing homes and expressing their sexuality.MethodsA qualitative inductive design was adopted; data were collected through semi‐structured interviews and analysed through content analysis.ResultsThe analysis reflected three categories. (1) Dealing with different reactions and responding to nursing staff and relatives: The registered nurses experienced discomfort, insecurity, frustration, distress and embarrassment when confronted with sexual expressions in people with dementia. (2) Caring with a focus on the person: The registered nurses expressed the importance of protecting the integrity of the person and consequently their right to sexual expressions. (3) Needing more competence development: The registered nurses expressed the need to educate and inform not only themselves but also the nursing staff and relatives.

\u201cSurviving to thriving\u201d: a meta-ethnography of the experiences of healthcare staff caring for persons with COVID-19

BackgroundThe emergence of the Coronavirus disease has heightened the experience of emotional burden among healthcare staff. To guide the development of support programmes, this review sought to aggregate and synthesise qualitative studies to establish a comparative understanding of the experiences of healthcare staff caring for persons with the disease.DesignA meta-ethnography approach was used to aggregate and synthesise primary qualitative studies. Database search was undertaken from January to November 2020. A standardised tool was used to extract data from the identified primary studies. The studies were translated into each other to formulate overarching concepts/ metaphors which formed the basis of undertaking a narrative synthesis.ResultsEight qualitative studies met the inclusion criteria. Two overarching metaphors/ concepts were formulated from the primary studies: 1) surviving to thriving in an evolving space and 2) support amid the new normal. The initial phase of entering the space of caring during the outbreak was filled with psychological chaos as healthcare staff struggled to survive within the context of an illness which was not fully understood. Gradually, healthcare staff may transition to a thriving phase characterised by resilience but still experienced heavy workload and physical/ emotional exhaustion predisposing them to burnout and compassion fatigue. Fear persisted throughout their experiences: fear of contracting the disease or infecting one’s family members/ loved ones remained a key concern among healthcare staff despite infection precaution measures. Healthcare staff who contracted the disease felt isolated with additional fears of dying alone. The sources of support were varied with a strong emphasis on peer support.ConclusionsHealthcare staff caring for persons infected with the Coronavirus disease are at risk of burnout and compassion fatigue and require ongoing mental health support commensurate to their needs. Staff who contract the disease may require additional support to navigate through the illness and recovery. Policies and concerted efforts are needed to strengthen support systems and build resilience among healthcare staff.

Nurses' experiences of caring for persons with dementia experiencing responsive behaviours in an acute hospital: A qualitative descriptive study.

To explore nurses' experiences of caring for persons with dementia experiencing responsive behaviours in an acute hospital. Caring for persons with dementia who have an acute medical illness and are experiencing responsive behaviours in acute hospitals can be challenging for nurses. While existing research has explored the experiences of nurses in providing dementia care in this setting, there is limited knowledge about the specific care experiences of nurses when working to meet the needs of persons with dementia who experience responsive behaviours alongside an admitting diagnosis. A qualitative descriptive design was implemented. Semi-structured interviews were carried out with nine nurses working in medical and surgical wards. A thematic analysis approach was used to analyse the data. Ethical approval to conduct the study was received from the writers' university. Three themes were found: (a) challenges encountered, (b) a person-centred response and (c) dementia preparedness. Key findings about challenges encountered by nurses included: the acute hospital environment; increased need for enhanced knowledge; and emotional challenges. Person-centred responses such as working in partnership with others and reminiscence were identified as strategies to address the challenges. Finally, nurses identified particular interventions that were supportive to them in enhancing their preparedness to meet the needs of persons with dementia who experience responsive behaviours. Persons with dementia who are acutely unwell and are experiencing responsive behaviours, within acute hospitals, have specific and individualised care needs. Nurses working in these settings must therefore be supported in developing competence in managing these frequently complex clinical cases, while also providing person-centred care. Nurses' narratives demonstrate that they continue to experience challenges in the presence of responsive behaviours. There is a consequent need for dementia-specific education on person-centred ways to address responsive behaviours within acute hospital settings.

Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study

Aim and Objective: This study aimed to explore how caregivers of persons with Down syndrome (DS) believe caring had an impact on their own lives. A secondary objective was to understand their experience of seeking educational, social, and health care services for the persons with DS. Methods: This qualitative exploratory study was conducted with 21 caregivers of persons with DS in Kuwait. Results: Caregivers struggled to accept the diagnosis initially that led them to search for answers to many of their concerns about raising a person with DS. For the caregivers, who mostly comprised of mothers, dealing with health conditions that persons with DS suffered from was initially difficult. Caring for these individuals led to heavy impact upon their caregivers’ own lives who took extraordinary efforts to cope with the burden. Seeking quality education for the persons with DS and participation in social activities was also challenging, and the caregivers believed that better services, facilities, and benefits for the families of persons with DS may help them better cope with the socioeconomic and psychological burden. Conclusions: Improving the availability of specialized services, the delivery of guidance and counselling, and social integration may help overcome challenges of raising a person with Down Syndrome.

Certified Nursing Assistants’ Experiences of Workplace Violence Caring for Persons With Dementia

Problem: Certified nursing assistants (CNAs) are the primary providers of direct care to persons residing in long term care facilities (LTCFs), many of whom have dementia. The need to deliver direct and intimate care increases CNAs’ exposure to verbal and physical workplace violence. Purpose: To describe CNAs’ experiences of physical and verbal workplace violence experienced during direct care activities in LTCFs. Design: Qualitative. Sample & Procedure: Ten African-American CNAs (9 female, 1 male) were recruited using snowball sampling from multiple LTCFs. Interviews were recorded and transcribed. NVivo12 software was used to manage the thematic analyses. Results: The identified themes were: 1) CNAs’ perception that verbal and physical abuse was “part of the job” and unavoidable; 2) CNAs’ feelings of minimization of the abuse by administration; and 3) inadequate CNA training to recognize and de-escalate triggers of verbal and physical violence, notably care-resistant behavior. Conclusion: The combination of institutional tolerance of workplace violence, coupled with CNAs’ insufficient training in de-escalating volatile interactions with cognitively-impaired residents, is creating an unfavorable, possibly dangerous, workplace environment for CNAs. Implications: As more states elevate assaults on healthcare workers to felony crimes, there is an emerging risk of criminalizing dementia-related behavior in an attempt to address workplace violence. Interventions focused on helping CNAs recognize and de-escalate care-resistant behavior are necessary for violence prevention programs in LTCFs. Limitations: CNAs may have self-censored and under-described the severity of their experiences during face-to-face interviews, even with confidentiality protocols and the practice of off-site interviews.

Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia.

UNDERSTANDING THE CHALLENGES, NEEDS, AND QUALITIES OF FRONTOTEMPORAL DEMENTIA FAMILY CAREGIVERS

Introduction Caregivers of persons with frontotemporal disorders (FTD) have unique challenges and needs. They show higher levels of stress, depression, and burden than those caring for persons with Alzheimer's disease. The clinical profiles and pathologies associated with FTD are heterogeneous and characterized by two main phenotypes: a progressive deterioration in behavior, emotion, and interpersonal conduct known as behavioral variant FTD (bvFTD) and a decline in language skills known as primary progressive aphasia (PPA). While there is abundant literature regarding the experience of caregiving for persons with AD, there are very few studies examining the experience of caring for persons with FTD and none that have compared behavior and language variant caregivers. Methods Caregivers of persons with bvFTD (Indiana University) and PPA (Northwestern University) were invited to participate in in-depth individual interviews to understand the nature of living with FTD from early symptoms to diagnosis and caregiving over time. 9 caregivers (5 bvFTD and 4 PPA) were interviewed. Interviews were recorded and transcribed. Transcripts underwent content analysis for emerging themes within the same profile and then discussed among authors for similarities and differences between profiles. Results Analysis revealed the following resulting themes: 1) Obtaining an accurate diagnosis was a difficult and lengthy process; 2) Finding lack of available information and misunderstanding the diagnosis; 3) Adapting to changing roles; 3) Experiencing significant financial and legal challenges; 4) Grieving losses, particularly developmentally non-normative losses due to younger age of onset; 5) Finding lack of disease specific services and knowledgeable providers; and 6) Receiving support in disease specific programs. Within these common general themes, there were differences in how disease presentations impacted functioning and challenged relationships. Conclusions Caregivers of persons with FTD experience distinctive challenges that involve psychosocial, financial, and legal aspects of their lives. Likewise, their needs include finding accurate and specific information as well as competent providers. Perseverance and adaptability are two key qualities involved in caring for persons with FTD, yet caregiver burden remains high. The findings from these interviews illuminate the need for greater attention and support for FTD caregivers by knowledgeable care providers. This research was funded by Not applicable.

The male familial caregiver experience of caring for persons with Alzheimer's disease from low socio-economic status: A South African perspective.

The aim of this study was to explore the experiences of male familial caregivers of persons with Alzheimer's disease from low socio-economic status using the ecological systems theory perspective. The data were obtained from 11 semi-structured interviews that were conducted with the familial caregivers of persons with Alzheimer's disease. Data were analyzed using thematic analysis, where four main themes emerged, namely, relationship difficulties, understanding Alzheimer's disease, support networks, and finding meaning and satisfaction in the caregiving role. Behavioral problems, erosion of the relationship with the significant other, familial conflict, experience of diagnosis, lack of information, lack of free time, and financial concerns were identified challenges facing caregivers. Provision of information, support groups, social support, community-based support, and finding meaning and satisfaction in the caregiving role were reported as resources that assist in caregiver coping. Men seem to be capable of providing effective care and are able to successfully manage in their caregiving role. Culture seems to play a significant role in help-seeking behavior and the approach to caregiving. The findings provide the basis for the specific needs of male caregivers that should be focused on in order to provide culturally appropriate services to enhance caregiver coping amongst male caregivers in similar settings.

Fighting for Freedom by Killing the Pain.

This symposium includes six personal narratives about military veterans' experiences receiving health care through the Military Health System or the Veterans' Health Administration. Five of the narratives were autobiographical accounts of men's personal experience of care and one of the accounts was written by a wife who watched her husband suffer with chronic pain after leaving the military. There is a good deal of literature in military and veteran's medical research pertaining to psychological and physical trauma rehabilitation; however, there is little reflection on what it is like for injured military personnel or veterans to overcome obstacles while in pain and attempting interface with these governmental health care systems. This symposium provides a closer look at the difficulties faced as these six men attempt to fight for personalized care in a collective heath care system.

Ethical aspects of caregivers' experience with persons with dementia at mealtimes.

Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health. To illustrate the meanings within caregivers' experiences of caring for persons with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes. Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated. Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons' expressions were observed aiming to respect their vulnerability, integrity, and dignity. One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served. Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided.

Family caregivers’ decision process to institutionalize persons with Parkinson's disease: A grounded theory study

BackgroundParkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers. AimsThe purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility. ParticipantsTwenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease. MethodGrounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis. FindingsThe caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease. ConclusionsImplications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.

Thai Nurses’ Experience of Caring for Persons Who Had a Peaceful Death in Intensive Care Units

This phenomenological study describes the lived experience of caring for persons who had a peaceful death in the intensive care units. Ten intensive care nurses in south Thailand participated in individual interviews. Van Manen's approach was utilized to synthesize data. The lived experience of Thai nurses caring for persons who had a peaceful death is: understanding the other through valuing experience and enhancing relationships with others by recognizing time is short and is a priority. Boykin and Schoenhofer's theory of nursing as caring provided the theoretical lens for interpreting the meaning of the phenomenon.

Thai nurses’ experience of caring for persons with life-sustaining technologies in intensive care settings: A phenomenological study

Technological competency as caring in nursing is grounded in the viewpoint that health care technologies are used to know persons. This study described the experiences of eight Thai nurses caring for persons with life-sustaining technologies in adult intensive care settings. Using individual semi-structured interviews, Van Manen's hermeneutic phenomenological approach was used to analyse the data. Nine thematic categories formed the description of the experience of caring for. The experience of caring for is described as valuing competency to care despite differing insecurities in the use of technology. Influenced by relationships and compassion, the risk that technology prevented an appreciation of persons as wholes is embodied in the encouraging collaboration of fostering time to care regardless of being in a restricted space surrounded with technology. Locsin's theory of Technological Competency as Caring in Nursing serves as theoretical lens through which findings are discussed. These findings should assist nurses achieve quality human care in intensive care settings.

Colorectal cancer follow-up: Patient satisfaction and amenability to telephone after care

Purpose To explore patient satisfaction on different aspects of follow-up service provision following treatment for colorectal cancer and amenability to an alternative strategy for follow-up care. Methods and sample A postal survey was administered to 297 eligible patients who had been treated for colorectal cancer at a large hospital in the North West of England. Patients were asked to indicate responses to questions comprising likert scales, including views on organisation of care, information and advice, personal experience of care, satisfaction with information and care, views on specialist nursing services and amenability to telephone follow-up. Key results One hundred and eighty-seven completed surveys were returned (62.97% response rate). Analysis of scale data indicated high levels of satisfaction on all outcome measures but sub-optimal rates of satisfaction on some items. Respondents indicated high levels of satisfaction with information related to disease and treatment but lower levels of satisfaction for items related to genetic risk, sexual attractiveness and self care. Colorectal nurse specialists were highly rated, especially in terms of information provision and personal experience of care. Patients were generally amenable to telephone follow-up, although male patients indicated higher levels of willingness to accept this approach than females. Conclusions Satisfaction with traditional medical based follow-up is generally high in this patient cohort but there is room for improvement in terms of service delivery. High levels of satisfaction with the care delivered by colorectal nurse specialists and patient acceptance of telephone follow-up suggests nurse-led telephone follow-up is a viable alternative to traditional hospital based follow-up.

Teaching and learning care – Exploring nursing students’ clinical practice

Care has always been a key element of nursing. This paper presents findings from research on the following issue: What opportunities and limitations do nursing students encounter when learning nursing care? The study has a qualitative design with field methodology and the study of documents. Six nursing students have been closely monitored during their clinical studies in hospitals, nursing homes and home-based nursing. The study shows that nursing students are likely to possess the potential to provide care for sick and unknown people. The motivation for their commitment to patients may contain an egoistical orientation and runs contrary to former ideals of the nurse's self-sacrificing altruism. Moreover the study shows that there is a potential in the clinical field and in the university college to reflective considerations on experience of care. While clinical practice often has focus on practical problem-solving and procedures, the college tends to focus on abstract theory. Both of these promote the privatisation and neglect of the students' experience of care. The paper concludes with a call for teaching and learning strategies targeting the use of nursing students' personal experience of care.

Ugandan Nurses’ Experience of Caring for Persons Dying From Ebola Hemorrhagic Fever

Written narratives of 15 Ugandan nurses’ experience of caring for persons dying from Ebola Hemorrhagic Fever were analyzed using van Manen’s (1990) phenomenological approach. From these narratives emerged the description of caring for persons as affirmation of knowing and the uncertainty of living life while consciously waiting and protecting self through isolation from family and society, and the selfless dedication of giving one’s life for others. Within this description is attributed the foci on health promotion, illness prevention, and early intervention as recommendations for effective nursing in community wellness practice.

How Caring for Persons with HIV/AIDS Affects Rural Nurses

Prior research findings about caregiving for persons with HIV/AIDS indicate that caregiving impacts nurses in three separate domains: personal self as a nurse in practice; interactions with the nurse's family members, friends, and colleagues; and interactions with persons with HIV/AIDS. However the impact caregiving for persons with HIV/AIDS has on rural nurses has not been extensively explored. A qualitative study of rural registered nurses' experiences of caring for persons with HIV/AIDS was conducted to determine how caregiving affects registered nurses in rural areas. Content analysis was used to analyze rural registered nurses' written comments about their experiences of caring for persons with HIV/AIDS. Themes identified from the nurses' accounts of instances of caregiving were the perceived risk of acquiring the virus, a lack of concern about HIV/AIDS, and a need for ongoing continued education about the care of persons with HIV/AIDS.