The meaning of middle‐aged female spouses’ lived experience of the relationship with a partner who has suffered a stroke,during the first year postdischarge

BÄCKSTRÖM B, ASPLUND K and SUNDIN K . Nursing Inquiry 2010; 17 : 257–268
The meaning of middle‐aged female spouses’ lived experience of the relationship with a partner who has suffered a stroke, during the first year postdischarge Stroke consequences present a great long‐term challenge to the spouses of the stroke sufferer. A longitudinal study with a phenomenological hermeneutic approach was used to illuminate the meanings of middle‐aged female spouses’ lived experience of their relationship with a partner who has suffered a stroke, during the first year postdischarge. Four middle‐aged female spouses of stroke sufferers participated in the study. Narrative interviews were conducted 1, 6 and 12 month postdischarge (total of 12 interviews), audio‐taped and transcribed verbatim to a text and interpreted by a phenomenological hermeneutic method inspired by Ricoeur. The findings showed a process over time during which spouses come to know, recognize and acknowledge the residual changes in their partners’ cognitive and emotional conditions and the impact on their relationship. Spouses showed grief due to the loss of the marital relationship they once had and anxiety that they would not be able to continue in an undesired relationship in the future. Even if the partner is still alive, there is a loss to grieve and to be understood, an important meaning of the transition process in the relationship during the first year after the partner's discharge.     

Living as a family in the midst of chronic illness

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.     

Catastrophizing and health-related quality of life: a 6-year follow-up of patients with chronic low back pain.

A pain rehabilitation model that focused on emotions was implemented to influence catastrophizing by, and health-related quality of life (HRQL) for, persons with chronic low back pain. Twelve individuals, 7 men and 5 women (aged 33 to 57 years), all with long-term pain despite treatment, were included in the study and a single case research experimental design (SCRED) was used to follow the patterns of coping with pain for 6 years. The HRQL was measured before and 6 years after the intervention. Coping strategies and HRQL were evaluated with the Coping Strategy Questionnaire (CSQ) and the SF-36, respectively. The evaluation of pain coping strategies after 3 years found decreased catastrophizing, a decrease that had continued 3 years later. HRQL showed significantly improved mental health and impaired physical capacity at the 6-year follow-up. Changes in catastrophizing or in HRQL did not appear to influence self-scored bodily pain. Altered catastrophizing appeared to be a long-term process. This research indicates the need for rehabilitation programs to assess and evaluate patients' pain and their need for improved quality of life, rather than focusing only on the elimination of pain.     

Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world

Title. Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life‐world. Aim. This paper is a report of a study to explore the changes experienced by the person living in a body with chronic obstructive pulmonary disease. Background. Chronic obstructive pulmonary disease is the world’s fourth leading cause of death, and the World Health Organisation predicts further increases in prevalence and mortality. Despite a growing body of associated knowledge, there remains much to learn about patient and family‐driven goals for medical and surgical treatment to guide nursing practice, to support self–management strategies, and to provide a context for therapeutic outcomes. Methods. Merleau‐Ponty’s philosophy of the body provided a framework for this Heideggerian phenomenological inquiry with 15 people with emphysema and 14 of their family members. The participants were drawn from three Australian teaching hospitals. Hermeneutic analysis was used to interpret 58 in‐depth interviews conducted between 2003 and 2005. Findings. People with severe emphysema experience a shrinking life‐world shaped by breathlessness. This diminishes the predictability and automatic nature of their bodies and their perceived effectiveness as a person. They develop a number of strategies of conscious body management to facilitate breathing, mobility and task completion. Conclusion. Understanding of the person’s changed body and the resulting expertise that those living with chronic illness bring into care and assessing and facilitating this expertise are central to planning sensitive and appropriate care and evaluating outcomes for medical or surgical therapies that are perceived as meaningful to the person.     

Living with a woman with fibromyalgia from the perspective of the husband

BACKGROUND: Fibromyalgia (FM) is a chronic pain syndrome, which affects mostly middle-aged women. The syndrome is poorly understood and treatment is mainly palliative. The diagnosis is established from diagnostic criteria. Living with FM means living a life greatly influenced by the illness in various ways for people affected. Aim of the study. The aim of this study was to describe the experiences of living with a woman with FM from the husbands' perspective. METHODS: Five men married to women with FM were interviewed using a narrative approach. The interviews were analysed using qualitative thematic content analysis. FINDINGS: The analysis resulted in the following seven themes: increasing responsibility and work in the home; being an advocate for and supporting the wife; learning to see the woman's changing needs; changing relationship between spouses; changing relationship with friends and relatives; deepening relationship with the children and lacking information and knowledge about FM. The findings show that the women's illness had a great impact on husbands' lives, and that husbands lacked information about the woman's illness. CONCLUSION: This study shows that it is not only the women with FM who experience a changed life; the whole family life is influenced and limited by FM. The husband's role in the family changes, first and foremost concerning responsibility and workload within the family. This must be taken into consideration in care planning. This study also highlighted the need of information and knowledge about FM expressed by the participants, information that health care personnel have a great responsibility to give.     

Living with persistent pain: experiences of older people receiving home care

BACKGROUND: Although the topic of pain among older people has received increasing interest, little is still known about how pain is experienced or handled by those who no longer manage independently but depend on professionals for help with daily living. Developing pain management for older people requires such knowledge. AIM: To explore sense of self, sense of pain, daily living with pain, sense of others and ways of handling pain in older people with persistent pain. METHODS: Interviews with 90 older people receiving home care from nursing auxiliaries in their own homes or in sheltered accommodation were collected from January to June 2000. A typology of older people in persistent pain was developed. Activities for handling pain were examined using content analysis. FINDINGS: Respondents' experiences of themselves and their pain varied. Two groups of older people, considered as 'competent and proud' and 'confident and serene', expressed satisfaction in spite of pain, while the groups 'misunderstood and disappointed' and 'resigned and sad' expressed dissatisfaction. The most common strategies used were medication, rest, mobility, distracting activities and talking about pain. Respondents chose strategies by balancing the advantages of the activities against the disadvantages these brought for their daily living. CONCLUSION: This study indicates that characteristics of the older people, such as their way of experiencing themselves, how pain affects their daily life and how they perceive effects and side-effects of pain management are areas that need to be identified when staff assess pain and plan pain management. Caring for older people in pain could be improved by listening to and believing their complaints, evaluating effects and side-effects from medications and nonpharmacological pain management and by emphasising the importance of common everyday activities such as mobility and distraction to relieve pain.     

Living in the shadow of fear: adolescents' lived experience of depression

AIM: This paper reports a phenomenological study whose aim was to gain an understanding of what it was like to be an adolescent living with depression. BACKGROUND: Depression is a significant mental health problem among adolescents. Identifying the meanings that adolescents assign to their experiences with depression is needed in order to develop interventions that will improve their care and quality of life. METHOD: The study took place in a city in Western Canada. Fourteen adolescents (13.5 to 18 years) diagnosed with depression participated in individual open-ended interviews and focus group interviews between July 2001 and June 2002. Field notes were recorded. Thematic statements that were representative of the adolescents' lived experience were isolated from the interviews and field notes. Using all the phrases, sentence clusters and field notes, the data were then reduced until essential and incidental themes emerged. FINDINGS: "Living in the shadow of fear" emerged as the essence of the adolescents' experiences and ultimately defined what it was like to live with depression. The shadow of fear was associated not only with fear of a return of the "bad" feelings related to their depression, but also to fear of not getting help, not surviving the "bad" feelings, and fear of having to do all the "hard work" in overcoming the "bad" feelings. This essence was supported by four themes: "containing the shadow of fear", "keeping the self alive", "maintaining a sense of belonging in the world" and "feeling valued as a human being". CONCLUSIONS: Adolescents with depression need adequate resources and support throughout the illness trajectory, including those periods when their depression is under control.     

Experiencing a nurse identity: the meaning of identity to Swedish registered nurses 2 years after graduation

RATIONALE: The professional identity and experiences of nurses have been focused upon in different studies AIM: This is a longitudinal study whose aim was to understand how nurses experience the meaning of their identity as nurses, when they are students and nurses 2 years after graduation. DESIGN: Data were collected through interviews once a year during education and two years after graduation, and were analysed using a phenomenological hermeneutic method, inspired by the philosophy of Paul Ricoeur. FINDINGS: The analyses of the narratives resulted in four perspectives: 'Having the patient in focus', 'Being a team leader', 'Preceptorship' and 'Task orientation'. The nurses did not change perspectives but the perspective showed a transition over time. CONCLUSION: The nurses' not changing perspective over time is understood as being a life paradigm, remaining throughout the years.     

Managing pain in chronic kidney disease: patient participation in decision-making

AIM: This paper is a report of a study to examine how decisions about managing pain were made between patients with chronic kidney disease and nurses, what affected the decision style and the types of analgesics and adjuvant therapies given for pain relief in relation to a particular decision style. BACKGROUND: While pain often accompanies chronic kidney disease, little is known of how decisions are made about managing pain in clinical practice. Lack of patient involvement in decision-making may lead to inadequate care provision. In some care situations, nurses have been more concerned with medication side effects than giving effective pain relief. METHOD: An exploratory study was conducted, using observations and interviews with a purposive sample of 14 nurses and 53 patients in five adult renal units in Australia. The data were collected during 2004. FINDINGS: Of the 103 pain activities observed, 78 involved a passive decision style between the nurse and patient, 19 involved a collaborative decision style, and six used an active decision style. The majority of routine analgesic and adjuvant medications administered involved a passive decision style. Most importantly, 25.6% of passive style decisions observed resulted in no administration of an analgesic or adjuvant medication; however, all collaborative and active style decisions observed resulted in administration of an analgesic or adjuvant medication. CONCLUSION: Nurses need actively to encourage patient involvement in treatment decisions because this promotes effective pain control. More research is needed into how specific detailed information about pain treatments could improve patient participation in decision-making.     

Nonpharmacological interventions for persistent,noncancer pain in elders residing in long‐term care facilities: An integrative review of the literature

Elders residing in long‐term care facilities experience ongoing moderate to severe pain, relief from and increased comfort remain relevant healthcare concerns. However, persistent, noncancer pain may not have been properly addressed due to insufficient attention to research that exists to support the utilization and efficacy of nonpharmacological intervention(s) for elders in long‐term care facilities. Our aim of this integrated review was to evaluate the current state of the science on nonpharmacological intervention(s) for pain that are currently utilized in elders who reside in long‐term care facilities. Exercise, massage, heat therapy, and relaxation/rest were identified as significant nonpharmacological interventions for persistent pain in elder residents living in long‐term care facilities.     

Self-organization in chronic pain: a concept analysis.

The purpose of this article is to examine the concept of self-organization in chronic pain using Rodgers' (2000) evolutionary approach. This article describes the antecedents, attributes, and consequences of self-organization in chronic pain. Self-organization in chronic pain may be achieved through the attributes of being believed, accessing credible resources, and taking action and responsibility. Self-organization occurs when the patient with pain develops a transformed identity, new insights, and is an active, in-control participant in care. Chronic pain is a common and costly problem, and recognition of the key attributes of self-organization in this condition is an important step in promoting positive health outcomes. Rehabilitation nurses play a key role in providing credible resources and working with the patient to take action and responsibility.     

Identifying a long-term/chronic, non-cancer pain population using a one-dimensional verbal pain rating scale: an epidemiological study.

The usefulness of the verbal pain rating scale (VRS) included in the Short Form 36 (SF-36) in identifying characteristics of long-term pain conditions, was analyzed using data from the 1994 Danish Health and Morbidity Survey. Based on the rating of pain intensity during a 4-week recall period the respondents were categorized into three groups: a high pain group (HPG) consisting of persons reporting moderate to severe pain (VRS 4-6), a low pain group (LPG) who rated their pain as very mild or mild (VRS 2-3), and a control group (CG) with no pain (VRS 1). The investigated sample comprised 3992 persons (HPG=563 persons, LPG=1714, and CG=1715 persons). Older age, educational level (< 10 years of schooling), cohabitation status (divorce/separation), and moderate to severe physical job strain were found to be significant risk factors for reporting high pain intensity (HPG). Only minor differences were observed between the LPG and CG. The proportion of respondents with good perceived health was significantly lower in the HPG compared with LPG and CG. The dominant complaints in the HPG were related to the musculoskeletal system. During a 14-day period prior to the interview persons in the HPG had a mean of 1.19 working days lost due to illness compared with a mean of 0.2 for the LPG and CG. Analyzing the use of medical services during the year before the interview, persons belonging to the HPG had an average number of nine contacts to general practitioners and specialized doctors in the primary sector as compared to six for the LPG and four for the CG. Mean numbers of hospital admissions were 0.29 for the HPG, 0.15 for the LPG and 0.10 for the CG. Mean numbers of in-hospital days were 1.60, 0.80, and 0.43 for the HPG, LPG, and CG, respectively. Our study suggest that one-dimensional pain intensity scoring using a simple VRS-scoring is useful as a screening instrument for identifying persons suffering from pain of a more complex nature. High intensity scores on a pain intensity scale should indicate to the investigator that she/he might be facing a person whose pain complaints and behavior are not only based on a pure biological background, but in whom also severe psychological and social problems might be present.