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.     

Spousal perspective of Parkinson's disease in middle life

An interpretive study in America explored the experience of living with a partner who has Parkinson's disease (PD) in middle life. Challenges experienced by eight spouses and their ways of coping with these challenges were examined. The convenience sample of five wives and three husbands were 44-58 years and had been married 4 months to 30 years. Spouses described the most significant challenges as watching their partner struggle and be frustrated; and renegotiating their lives. The coping strategies most frequently used were maintaining their own life, encouraging their partner to stay active and involved, and seeing the challenges they experienced as secondary. The context of living with a partner with Parkinson's disease is illuminated and strategies that spouses find most effective in coping with their partners illness are identified.     

Caring as worrying: the experience of spousal carers

BACKGROUND: With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers. AIM: The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered. METHODOLOGY: An interpretive phenomenological approach was used to describe spousal carers' experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis. FINDINGS: This paper presents one of the major themes identified: 'caring as worrying'. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support. CONCLUSION: Spousal carers' worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.     

The experiences of partners of critically ill persons in an intensive care unit.

The aim of this study was to describe partners' experiences when their spouses received care in an intensive care unit (ICU). Seven partners were interviewed using a narrative approach. The interview texts were subjected to qualitative thematic content analysis. The analysis resulted in three themes; being present, putting oneself in second place and living in uncertainty. It was a shocking experience for the partners to see their critically ill spouse in the ICU. It was important to be able to be present; nothing else mattered. Showing respect, confirming the integrity and dignity of their critically ill spouse were also essential for partners. Receiving support from family and friends was important, as were understanding and accepting what had happened, obtaining information and the way in which this was given. The state of uncertainty concerning the outcome for the critically ill person was difficult to cope with. The partners wanted to hope, even though the prognosis was poor.     

Myocardial infarction: narrations by afflicted women and their partners of lived experiences in daily life following an acute myocardial infarction

Background. The review of the literature showed that many people and their family members share feelings of distress after an acute myocardial infarction. Therefore, it is important to show how the illness affects the relationship in the couple's daily life when the closest relatives involved are men. Aim. The aim was to illuminate the meaning of lived experiences in daily life after an acute myocardial infarction, as narrated by afflicted women and their partners. Methods. Nine women and their partners narrated their experiences three and 12 months after an infarction. The interview texts were then interpreted, using a phenomenological hermeneutic method, inspired by the philosophy of Ricoeur. The text was divided into meaning units that were condensed and abstracted. Two themes and eight sub‐themes were then extracted from the text. Results. The first theme was ‘living in a changed life situation’ with the sub‐themes: ‘showing consideration’, ‘taking responsibility’, ‘living side by side’ and ‘desiring what to do’. The second theme was ‘looking to the future’ with the sub‐themes: ‘feeling uncertain’, ‘feeling powerless’, ‘feeling limited’ and ‘feeling hope’. Conclusions. The results revealed that couples lived in a changed life situation, somewhat in ‘discordance’, and showed consideration to each other in order to protect the partner. There seemed to be a lack of verbal communication, but both women and their partners revealed that they sensed how their partners felt without verbal communication. In this ‘discordance’, couples may experience loneliness, in that they may not share feelings about the event and the situation it causes. Relevance to clinical practice. Women and their partner have specific needs in daily living following an acute myocardial infarction. Therefore, nurses should acknowledge the specific needs for the female patient and the partner more clearly.     

Spouse burnout syndrome

In married couples, chronic illness in one partner can result in increased responsibilities for the spouse and lead to spouse burnout. Burnout has been described as a syndrome encompassing both physical and emotional symptoms. The literature has addressed the burnout syndrome experienced by health care professionals but few articles have addressed burnout in spouses of chronically ill persons. During a preliminary study of 30 chronically ill persons and their spouses, the following two questions were raised: (1) Were the manifestations of the spouses similar to the indications of burnout exhibited by health professionals? and (2) What factors in the home where one member was chronically ill contributed to the spouse's burnout? The three stages of burnout were examined. The emotional and physical symptoms of burnout in the first and second stages were very similar to symptoms identified in the spouses of our preliminary study. The spouses in our study did not exhibit signs or symptoms of the third stage. Three home situations were extrapolated from the study group in order to examine in depth specific examples of spouse burnout. Nurses have a responsibility to care for the spouse caregiver as well as the patient. The nurse must recognize behaviour which may be indicative of burnout syndrome. With this knowledge, the nurse is then better prepared to assist the spouse in prevention and/or early recognition and plan interventions accordingly.     

'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners

Scand J Caring Sci; 2012; 26; 587–597 ‘Mastering an unpredictable everyday life after stroke’– older women’s experiences of caring and living with their partners Introduction: The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce. Aim: To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications. Method: The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67–83), participated in four focus group discussions, which each met once for not more than 2 hours. Findings: The discussions resulted in one comprehensive theme; ‘Mastering an uncertain and unpredictable everyday life’. Three subthemes emerged from the material: ‘Living with another man’ where the carers discussed not only the marked change in their partner’s personality, but also the loss of a life‐companion and their mutual intellectual contact; ‘Fear of it happening again’, comprising the carers’ experiences of fear and confinement, of always having to be ready to help and of being trapped at home; ‘Ongoing negotiation’, referring to the carers’ struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves. Conclusion: This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers’ need for time to themselves, a greater knowledge of stroke and continuous support from formal care.     

Acute myocardial infarction in middle-aged women: narrations from the patients and their partners during rehabilitation.

The purpose of this study was to examine the meaning of lived experiences after an acute myocardial infarction (AMI) and being a partner to an afflicted woman, as it is narrated during rehabilitation. Nine women and their partners narrated their experiences three and twelve months after AMI. The interview texts were transcribed and then interpreted, using a phenomenological-hermeneutic method inspired by the philosophy of Ricoeur. The result showed that their experiences of the illness contained two themes: 'rehabilitation needed' and 'loss of freedom' which contains eight sub-themes; 'adapting to it', 'struggling against it', 'living as normally as possible', 'having insight into how it can be', 'feeling guilty and ashamed about being weak', 'withholding feelings', 'feeling useless', and 'feeling fatigued and losing strength'. After further interpretation, the themes gave a deeper meaning of living with AMI and how it affects women and their partners. The women conceded that they felt distressed and vulnerable but struggled against the fear the illness means. The partner's role appears to be one of trying to adapt to the women's experiences of the illness. That the women withheld their feelings and did not talk about them indicates a lack of communication between the couples. As coronary care nurses often come very close both to the afflicted persons and the relatives they fill an important function in each patient's recovery. The nurses could help and prepare the patients and their relatives to understand better such feelings and reactions as could appear after discharge from hospital.     

Alone together: A grounded theory study of experienced burden,coping, and support needs of spouses of persons with a bipolar disorder

Bipolar disorder is a chronic and severe mental disorder. Little is known about the experiences of the spouses of such patients. A grounded theory study was undertaken to examine the burden for spouses living with a partner with a bipolar disorder and to explore how they cope and what support they need. Fifteen spouses and ex‐spouses were interviewed; they experienced heavy burden and found themselves to be ‘alone together.’ Their coping process is found to involve appraisal of the situation and attempts to achieve a balance between self‐effacement and self‐fulfilment. While support can clearly reduce experienced burden, the spouses surprisingly receive virtually no professional support. A theory is developed that constitutes a starting point for the development of adequate support for spouses.     

Qigong practice among chronically ill patients during the SARS outbreak

Aims and objectives. This research aimed at exploring the motivations and experiences of chronically ill participants practising qigong during the severe acute respiratory syndrome outbreak in Hong Kong. Background. Although biomedicine is the mainstream medical system in Hong Kong, many people employ complementary and alternative medicine in dealing with their chronic health problems. Practising qigong is one of the most popular forms of complementary and alternative medicine used among chronically ill patients. Little is known about the experiences of the chronically ill patients practising qigong in the severe acute respiratory syndrome outbreak and even less is known how this practice is related to the social context of Hong Kong during the outbreak. Design and methods. Qualitative methods using participant‐observation from three qigong classes in Hong Kong and in‐depth semi‐structured interviews with 30 participants were employed. Content analysis and discourse analysis were used to identify major themes of the data. Results. Both the underlying and trigger motivations could motivate these chronically ill participants to practise qigong. Legitimacy of qigong in health maintenance, deterioration of health and unpleasant experiences in biomedical treatment on their chronic illnesses served as the underlying motivations. Stigmatization of and discrimination against the chronically ill and the sense of searching coping strategy during the severe acute respiratory syndrome outbreak further motivated their practice. Conclusion. To the participants, practising qigong not only could strengthen their health, but was also a coping strategy for them to regain an active control and the sense of security in their health and enabled them to overcome the social stigmatization and discrimination during the outbreak. Relevance to clinical practice. Searching for emotional support and a more active role in health conditions could be seen from the chronically ill participants. Understanding and paying more attention to the particular needs of the chronically ill patients can enable health‐care professionals to provide better care and support for the chronically ill during an epidemic crisis.     

The Medical Marriage: A National Survey of the Spouses/Partners of US Physicians

ObjectiveTo evaluate physician relationships from the perspective of their spouses/partners.MethodsNearly all data on satisfaction with physician relationships come from the perspective of the physician rather than their spouse/partner. We conducted a national study of the spouses/partners of US physicians from August 17, 2011, through September 12, 2011. Responding spouses/partners provided information on demographic characteristics, their own work life, and the work life of their physician partners. Spouses/partners also rated relationship satisfaction and the effect of the work life of their physician partner on the relationship.ResultsOf the 1644 spouses/partners of physicians surveyed, 891 (54.2%) responded. Most spouses/partners (86.8%) reported that they were satisfied with their relationship with their physician partner. Satisfaction strongly related to the amount of time spent awake with their physician partners each day. Despite their overall satisfaction, spouses/partners reported their physician partners frequently came home irritable, too tired to engage in home activities, or preoccupied with work. On multivariate analysis, minutes spent awake with their physician partners each day was the strongest predictor of relationship satisfaction, exhibiting a dose-response effect. No professional characteristic of the physician partners (eg, hours worked per week, specialty area, and practice setting) other than the number of nights on call per week correlated with relationship satisfaction on adjusted analysis.ConclusionThe spouses/partners of US physicians report generally high satisfaction with their relationships. The mean time spent with their physician partners each day appears to be a dominant factor associated with relationship satisfaction and overshadows any specific professional characteristic of the physicians' practice, including specialty area, practice setting, and work hours.     

BATTERER INTERVENTION PROGRAM: THE VICTIM'S HOPE IN ENDING THE ABUSE AND MAINTAINING THE RELATIONSHIP

In this existential-phenomenological investigation, women whose partners were mandated to attend a batterers' intervention program (BIP) were interviewed about their experiences before their partner attended his first class. The goal of this study was to gain an understanding of the woman's expectations of the BIP in the aftermath of her experience of abuse and her reasons for maintaining the relationship. Women described their experience as one of living in a dangerous environment that keeps them nervous, confused, fearful, and feeling bad about themselves, but yet hopeful that the abuse will stop now that their partner is being sent to treatment. BIP was, in fact, the “last hope,” an optimism unsupported by current research data.     

Batterer intervention program: the victim's hope in ending the abuse and maintaining the relationship

In this existential-phenomenological investigation, women whose partners were mandated to attend a batterers' intervention program (BIP) were interviewed about their experiences before their partner attended his first class. The goal of this study was to gain an understanding of the woman's expectations of the BIP in the aftermath of her experience of abuse and her reasons for maintaining the relationship. Women described their experience as one of living in a dangerous environment that keeps them nervous, confused, fearful, and feeling bad about themselves, but yet hopeful that the abuse will stop now that their partner is being sent to treatment. BIP was, in fact, the "last hope," an optimism unsupported by current research data.     

Men's experiences of their partner's primary and recurrent breast cancer.

The reaction and support from the partner of the woman with breast cancer is viewed by health professionals as an important factor in her adjustment to disease. However, there is little theory and research that focuses on the individual concerns and experiences of the man living with a woman who has breast cancer. Literature concerning the experience of breast cancer recurrence for both the partner and the patient is particularly sparse. The aim of this literature review is to explore the experiences of male partners of women with breast cancer. The role of the male partner supporting the woman with breast cancer, and the potential concerns he may have, will be explored. It will also focus on the partners' experience of living with a woman with primary breast cancer. Finally, the partners' experience of living with a woman with a recurrence of metastatic breast cancer will be considered. Relevant literature is reviewed and critiqued to place current knowledge in context, including identifying areas for further research.     

The young adult with diabetes: impact of the disease on marriage and having children

To investigate the impact of insulin-dependent diabetes mellitus on marriage and having children we studied 50 young adults (aged 20-35 yr) with onset of the disease less than 20 yr. The subjects studied (37 women and 13 men) included 17 single, 26 married, and 7 divorced/separated diabetic patients. Twenty-two spouses of the 26 married diabetic patients also participated in the study. A 35-item questionnaire was developed with a 4-point Likert scale format for responses and administered separately to the patients and their spouses. None of the young adults in this study had made a conscious decision to remain unmarried, but 14 of 50 had decided not to have children. Onset of diabetes before 9 yr was associated with a significantly higher marriage rate than later onset of diabetes. Although onset of the disease after age 13 yr was more often associated with a decision to remain childless compared with earlier onset, this difference was not significant. Both men and women with diabetes found that the disease had an impact on certain aspects of their marital life, at times leading to friction and causing a financial burden. Whereas spouses were perceived to be very supportive, there was disagreement between young diabetic subjects and their spouses as to the impact of the disease on family activities and finances, the partners with diabetes perceiving a greater effect on these aspects of their lives than did their spouses.     

Research on couples: are feminist approaches useful?

Title. Research on couples: are feminist approaches useful? Aim. This paper is an exploration of the utility and value of feminist approaches when undertaking narrative‐based research with partner dyads (within both heterosexual and same sex partnerships) and when researching sensitive issues. Background. Adverse life events or conditions experienced by individuals have been found also to have a negative impact on their partners. Most literature addressing partner issues uses quantitative methods, and existing qualitative research on couples has traditionally interviewed only one person in the partnership or coupled partners together. There is little discussion in the literature about the use of feminist research when researching male perspectives and experiences, and even less discussion of the possibilities that feminist research methods bring to the study of couple dyads. Discussion. Qualitative methodologies informed by feminist perspectives, including issues of reciprocity and self disclosure, can be used to unpack structural, personal and political issues related to couples’ experiences. A feminist approach allows us to show that the origin of oppression is not personal but very much about power and that men as well as women, regardless of their sexuality, may experience the effects of oppression. Narrative and story‐telling complements feminist research because of the value it assigns to the storytellers. Conclusion. To care for women effectively, we must also consider the experiences of their partners as the health of one partner has the potential to impact on the other. The concept of oppression is not absent, but indeed is illuminated, in the lives of some men. Gathering stories using feminist perspectives enhances respect and mutuality in the research process.     

Smoking habits before, during and after pregnancy among Swedish women and their partners in suburban Stockholm.

Smoking habits of pregnant women and their partners at three health centres in Stockholm, Sweden, were monitored by a postal questionnaire. Of 582 women enlisted at the antenatal clinics, 433 (74%) were included. 253 (58%) women and 230 (53%) partners responded. 30% of the women were smokers at the start of pregnancy, compared with 27% of the men. During pregnancy 18% continued to smoke, and after the birth of the child 21% were smokers. The male partners stopped or decreased smoking less often. Fewer women aged 25 or more were smokers. The number of heavy smokers decreased considerably during and after pregnancy. The women were more prone to stop smoking if the partner was a non-smoker. 87% made some restriction in their smoking habits after the baby was born.