The health behaviours of Chinese people with chronic illness

This study was undertaken to elucidate the type and range of health-promoting behaviours that Chinese people with chronic illness perform to enhance their health. Eight people with a diagnosed chronic illness were interviewed using a semi-structured interview schedule. From the perspectives of these subjects, health behaviour comprises three dimensions: physical, psychosocial and spiritual. The results of this study clarify health behaviours amongst Chinese people with a chronic illness and illustrate the important influence that culture has upon such activity. Additionally, exploring the health behaviours of these Chinese people can be used to inform and enable nurses to adjust their practices to relate more appropriately to patients’ perspectives.     

From miracle to reconciliation: A hermeneutic phenomenological study exploring the experience of living with Parkinson's disease following Deep Brain Stimulation

Background

Deep Brain Stimulation for Parkinson's disease is a promising treatment for patients who can no longer be treated satisfactorily with l-dopa. Deep Brain Stimulation is known to relieve motor symptoms of Parkinson's disease and improve quality of life. Focusing on how patients experience life when treated with Deep Brain Stimulation can provide essential information on the process patients go through when receiving a treatment that alters the body and changes the illness trajectory.

Aim

The aim of this study was to explore and describe the experience of living with Parkinson's disease when treated with Deep Brain Stimulation.

Design

The study was designed as a longitudinal study and data were gathered through qualitative in-depth interviews three times during the first year of treatment.

Participants and setting

Nine patients participated in the study. They were included when they had accepted treatment with Deep Brain Stimulation for Parkinson's disease.

Methodology

Data collection and data analysis were inspired by the hermeneutic phenomenological methodology of Van Manen.

Results

The treatment had a major impact on the body. Participants experienced great bodily changes and went through a process of adjustment in three phases during the first year of treatment with Deep Brain Stimulation. These stages were; being liberated: a kind of miracle, changes as a challenge: decline or opportunity and reconciliation: re-defining life with Parkinson's disease. The course of the process was unique for each participant, but dominant was that difficulties during the adjustment of stimulation and medication did affect the re-defining process.

Conclusion

Patients go through a dramatic process of change following Deep Brain Stimulation. A changing body affects their entire lifeworld. Some adjust smoothly to changes while others are affected by loss of control, uncertainty and loss of everyday life as they knew it. These experiences affect the process of adjusting to life with Deep Brain Stimulation and re-define life with Parkinson's disease. It is of significant importance that health care professionals are aware of these dramatic changes in the patients’ life and offer support during the adjustment process following Deep Brain Stimulation.     

Older women's experience of living with chronic leg ulceration

In this study the authors sought to gain insight into the lives of older women, to focus on the experience of living with leg ulcers and to explore women's views by talking to them about their experiences. Twelve English-speaking women aged over 70 years who had experienced leg ulceration for 3 years or more were interviewed. Analysis of the interview text revealed two overarching themes: (i) gaining and maintaining control over vulnerable limb(s); and (ii) lifestyle consequences of chronic leg ulceration and impaired mobility. These themes contained several subthemes including: (i) nagging pain; (ii) self-expertise and infection; (iii) leakage, smell and embarrassment; (iv) fighting for skin and limb integrity; (v) wearing non-preferred apparel; (vi) loneliness; and (vii) coping, determination and hope. The findings of this research show that elderly women who live with leg ulcers experience multiple consequences. While the everyday problems of living with an unhealed would are addressed by the community nurse, other more subtle consequences may be overlooked. Recognition of the complex and sometimes hidden concerns of these women could help to avert the sense of helplessness which currently exists.     

Older people and adherence with medication: a review of the literature

Background

Older people represent a sizeable population of the UK. Many older people receive drug treatment for long-term conditions. Adherence with medication is therefore an important clinical, financial and resource intensive concern.

Objectives

This review aimed to examine patient's beliefs, perceptions and views in relation to adherence with medication.

Design

A comprehensive search of the literature was undertaken using numerous approaches. The search of revealed 30 research papers.

Findings

Articles were initially evaluated using Critical Appraisal Skills Programme principles to identify those relevant to the review. Relevant studies were then subjected to a narrative analysis to assist the development of relevant themes. Four themes were identified; experience of adherence; perceptions and attitudes to medication adherence and non-adherence; patients acceptance of their illness and impact on medication taking behaviour and shared decision making.

Conclusions

The findings of this review imply that there is a need for more emphasis on shared decision making between the older patient and the prescriber. Using this approach, adherence with medication may improve. There is also a need to develop a standardized measure of medication adherence.     

The experience of living at home with frailty in old age: A psychosocial qualitative study

Background

With enhanced longevity, many people in late old age find themselves frail and living at home, often alone. Whilst conceptualisations vary, frailty is often used in clinical practice as a directional term, to refer to older people at particular risk of adverse health outcomes and to organise care. Investigation of the experience of being frail is a complementary and necessary addition to international research endeavours clearly to define, predict and measure frailty. Currently, there is little empirical work exploring how people over time manage being frail.

Objective

The study aimed to understand the experience over time of home-dwelling older people deemed frail, in order to enhance the evidence base for person-centred approaches to frail elder care.

Design

The study design combined psychosocial narrative approaches and psycho-dynamically informed observation. Data on the experience of 15 frail older people were collected by visiting them up to four times over 17 months. These data were analyzed using psychosocial analytical methods that combined case based in-depth staged analysis of narratives with psycho-dynamically informed interpretations of observational data.

Setting

The study was carried out in the homes of the participants; all lived in a socio-economically diverse area of inner London.

Participants

15 participants were purposively selected for living at home, being aged 85 or older and regarded as frail by a clinical multi-disciplinary intermediate care team.

Results

The findings challenge the negative terms in which frailty in older age is viewed in the predominant models. Rather, frailty is understood in terms of potential capacity – a state of imbalance in which people experience accumulated losses whilst working to sustain and perhaps create new connections.

Conclusion

This study suggests that holding together loss and creativity is the ordinary, but nonetheless remarkable, experience of frail older people. For frail older people, the presence of others to engage with their stories, to recognise and value the daily rituals that anchor their experience and to facilitate creative connections is vital if they are to retain capacity and quality of life whilst being frail.     

The quest for ordinariness: transition experienced by midlife women living with chronic illness

AIMS: This paper reports the findings of research that aimed to elucidate the meaning of midlife women's experiences of living with chronic illness. BACKGROUND: A lack of awareness by health professionals of the context in which women must live with chronic illness often results in women feeling overwhelmed, alienated and without voice within the delivery of health care. This inquiry privileged women's voices. DESIGN: The construct of 'transition' in chronic illness experience evolved from this collaborative and participatory research with midlife women living with adult onset chronic illness. Over a 1-year timeframe, 81 women were asked to tell their stories of living with a chronic illness. These correspondence data were thematically analysed to provide storied accounts. Guided by feminist principles, women were empowered through research processes and have actively participated in the development of the transition construct. FINDINGS: The research revealed that when women are first confronted with a chronic illness they appear to move through a complex trajectory that involves an 'extraordinary' phase of turmoil and distress; however, they may then make the transition toward an 'ordinary' phase that involves incorporating chronic illness into their lives. Transitions in chronic illness experience involve movement from extraordinariness to ordinariness and sometimes back again and were found to be processes that are nonlinear, sometimes cyclical and potentially recurring throughout a woman's life. Four major constructs emerged from women's narratives: How quickly life changes; extraordinariness: confronting life with illness; The illness experience as transforming and ordinariness: reconstructing life with illness. CONCLUSION: Nurses are in a position where they may make a difference to women who live with chronic illness. Understanding illness transitions offers a framework that will enable nurses to move beyond the bio-medically orientated concepts of nursing practice, towards a holistic approach to the provision of nursing care.     

A person-centred lifestyle change intervention model: Working with older people experiencing chronic illness

A person-centred health promotion model of care to improve self-care and lifestyle changes for older people with chronic illnesses is conceptualized in this paper. The model supports effective interpersonal communication with nurses and health-care consumers and is developed to concept stage. Older people with chronic illnesses who experience stress, anxiety or social isolation are more likely to be admitted and re-admitted to acute hospitals. Interventions to decrease the risk factors are frequently unsuccessful in this patient group. Programmes, led by nurses, aimed at reducing stress, anxiety and social isolation while supporting older people postdischarge from hospital might be successful. The model integrates research from synthesized case studies and a critical literature review. The practices of interrelating four key elements-'construct', 'context', 'process' and 'outcome'-are proposed for nurses to assist patients advancing self-care and lifestyle change. The model is designed for implementation in outpatient, clinic or community settings.     

The lived experience of fathers who have children with asthma: a phenomenological study

Asthma is a common chronic illness of childhood and a major cause of school absenteeism and hospitalization. When a child is diagnosed with asthma, parents become responsible for the long-term management of a chronic condition that is characterized by unpredictable and irregular episodes. Much of the research concerning parenting children who have asthma had focused on mothers. Paternal experiences in caring for a child with asthma have received little attention. In this phenomenological study, van Manen's (Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. The Althouse Press: London, ON) method of inquiry was used to explore the lived experience of fathers who have children with asthma. Eight fathers with children aged between 7 and 11 years who had been diagnosed with asthma were interviewed. Five themes were identified: feeling relief in knowing the diagnosis, learning the ropes, being vigilant, living with concern, and being comfortable with asthma management. Understanding the experience of fathers who have children with asthma and gaining insight into their needs and concerns are essential first steps to providing supportive nursing care.     

The meaning of living with severe chronic heart failure as narrated by elderly people

The meaning of elderly patients' experiences of living with chronic heart failure was studied. Narrative interviews were analysed using a phenomenological hermeneutic approach. 'Feeling imprisoned in illness' and 'feeling free despite illness' constituted the themes. These themes were interpreted as describing variations in awareness of the relationship between the self and the body. In theme 'feeling imprisoned in illness' the body's illness and disability hindered the subjects from being themselves. In the theme 'feeling free despite illness' the disabled body was not experienced as limiting, but rather as a part of the self. The patients' understanding of the illness must be interpreted by the caregiver, who also needs to be aware of different modes of communicating feeling about the illness.     

精神疾病病人病耻感体验的质性研究

目的:探讨精神疾病病人病耻感体验及应对方式。方法:对12例病人进行深度访谈以获取资料,用现象学分析法分析资料。结果:精神疾病病人在患病后都会产生羞耻心理;遭遇歧视时被他人躲避而感到无奈,工作、升职受到不公平待遇而痛心;在遭遇歧视后病人多采取回避社交、刻意的隐瞒病情等错误的应对方式;由于精神疾病,有些病人放弃了原本的工作以及对未来生活产生不确定感。结论:对精神疾病病人要加强疾病的健康宣教,改变病人不正确的认知;做好心理护理,提供情感支持;加强对公众精神卫生知识的宣教和普及。     

Constructions of sexuality for midlife women living with chronic illness

AIM: In this paper, we reveal constructions of sexuality that were articulated by women who participated in an inquiry which aimed to understand the experiences of midlife women who live with chronic illness. The aim of this paper is to illuminate sexuality as an important health issue for women living with chronic illness and to offer ways that nurses may acknowledge and facilitate sexuality issues for women. BACKGROUND: The first author, as part of her doctoral study, corresponded with 81 women living with chronic illness. The participatory inquiry was framed by feminist principles and enabled women to anonymously share their experiences and collaborate in the direction of the research. During the analysis phase of the research, it became evident that illness had altered the way in which women conceptualized sexuality. DESIGN: The three authors performed secondary analysis of the original data set in order to re-examine the impact that chronic illness had on the sexuality of midlife women who live with chronic illness. Whilst we acknowledge that sexuality has multiple meanings, in this paper we describe the way in which women themselves have constructed and articulated their sexuality. FINDINGS: We found that sexuality incorporated women's desires, appearance, sexual feelings and expression and imposed on aspects of their lives that they had not needed to acknowledge before illness intruded. Three concerns are discussed; the changing body, meeting the needs of others and communicating sexuality. CONCLUSIONS: This paper reveals that issues of sexuality are an important health concern for women who live with long-term illness and should be acknowledged in sensitive and responsive health practices. The paper concludes that it is important for nurses to provide women opportunity for open and genuine communications about sexuality. In this way, a foundation of acceptance for the whole person is established which provides women permission to ask questions and seek assistance with sexuality issues.     

Risk factors associated with dehydration in older people living in nursing homes: Scoping review

BackgroundDehydration in the older people is a prevalent problem that is often associated with physiological changes, physical limitations and environmental conditions.ObjectivesThe scoping review was carried out to identify risk factors associated with dehydration in older people living in nursing homes.DesignThe revised scoping methodology framework of Arksey and O’Malley (2005) was applied. Study selection was carried out in accordance with Davis et al. (2009) and focused on the inclusion criteria (people over 65 years old and living in nursing homes). Risk factors were classified using the geriatric assessment.Data sourcesAn electronic database search was performed in PubMed, Scopus and CINAHL. The literature search was carried out between October 2016 and January 2017.Review methodsThematic reporting was performed and study findings were validated through interdisciplinary meetings of experts. The quality of the papers consulted was also evaluated using the Newcastle-Ottawa Scale adapted for cross-sectional, cohort and case-control studies.ResultsIn all, 16 papers were analysed, all of which were observational studies. The risk of bias ranged from very low (n = 1), to medium (n = 13) and high (n = 2). The risk factors were classified in line with the different components of the geriatric assessment. In the socio-demographic characteristics age and gender were identified. In the clinical component, infections, renal and cardiovascular diseases and end-of-life situations were the most common factors highlighted in the papers analysed. With reference to the functional component, its limitation was associated with dehydration, while for factors of mental origin, it was related to dementia and behavioural disorders. Finally, the factors relating to the social component were institutionalisation, requiring a skilled level of care and it being winter.ConclusionsThe most commonly repeated factors highlighted in the review were age, gender, infections, end of life and dementia, with it being important to highlight the large number of factors in the clinical component. Even so, the great majority of the factors were unmodifiable conditions associated typically associated with the physiology of ageing.     

Narratives of children with chronic illness about being comforted

The aim of the study was to examine how children with chronic illnesses narrate their experience of being comforted in hospital. During interviews, seven children, 4-10 years old described their experiences and made drawings. Thematic content analysis revealed following themes: being physically close to one's family, feeling safe and secure, staff being there for the children, and children being there for parents and siblings. Mother was identified as the most important comforter. The findings suggest that trusting in the staff's knowledge and professional skills is a prerequisite for children to feel "at home", and safe in hospital. Being close to one's family is even more important.     

女性系统性红斑狼疮患者患病体验的Meta整合

目的:分析与整合女性系统性红斑狼疮（SLE）患者的患病体验。方法:计算机检索PubMed、Web of Science、CINAHL、the Cochrane Library、PsycINFO、中国生物医学文献数据库、万方数据库、维普网、中国知网等中英文数据库中关于女性SLE患者患病体验的质性研究,检索时限为建库至20...