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Sexuality, intimacy and motor neuron disease: matters of concern
Abstract
Background: There is limited research considering sexuality and intimacy in
people living with motor neurone disease (pwMND). To ensure that healthcare
practice meets service-users’ needs, it is important to consider how
living with MND affects expressions of sexuality and intimacy.
Aim: To understand experiences of sexuality and intimacy when living with
MND.
Method: In this Heideggerian phenomenological study, one-to-one,
conversational interviews were held with 13 pwMND and 10 partners of
pwMND.
Findings: Thematic analysis showed sexuality and intimacy to be experienced
through sexual and non-sexual touch. Barriers included the failing body, an
altered sense of sexual self and the intrusion of equipment. Partners’
difficulty in adapting to change or their own health problems created
additional barriers. Many participants found ways to adjust, and
recommended that health-care professionals provide opportunities for
people to discuss any concerns.
Conclusions: The findings greatly enhance our understanding of living with
MND and indicate a role for health-care professionals in addressing
sexuality.
... Sexual function is not affected directly by ALS, but impairment of motor functions may make intimacy difficult [15,16]. Two patients spoke spontaneously of the shortage of assistive devices available for maintaining a normal sexual relationship with a partner. ...
... The patients in question were younger, and the duration of their disease was longer than the study average. Several earlier studies have pointed out that sexuality is followed up to only a very limited extent by healthcare professionals [15][16][17]. Questions about sexual needs tend not to be put to ALS patients [18]. A stronger focus on how motor neuron diseases affect cohabitation and intimacy appears important for ensuring that the healthcare service meets patients' needs in this domain. ...
Aims:
There are limited analytical descriptions of the assistive device situation in Norway for patients with ALS and other motor neuron diseases. This study is aimed at investigating how patients, caregivers, and healthcare professionals (occupational therapists and physiotherapists) experience the assistive device situation.
Methods:
Twenty-four interviews were conducted with patients with motor neuron disease, caregivers, and healthcare professionals involved in procurement and adaptation of assistive devices. Systematic text condensation was used to analyse the interviews.
Results:
The majority of patients and caregivers had positive experiences of follow-up by the specialist healthcare service. Several found follow-up by the primary health service to be deficient owing to inadequate expertise, continuity, and resources. Healthcare professionals reported having a proactive approach to identifying needs for assistive devices, but for various reasons, application processes were often delayed. Several patients indicated a reluctance to use assistive devices and were ambivalent regarding proactivity. The availability of assistive devices for some functional impairments was described as inadequate. Some patients felt there was too little focus on sexuality in the follow-up. The respondents had a number of suggestions for improving the assistive device situation.
Conclusions:
Multidisciplinary ALS teams are found to ensure follow-up expertise and continuity. Healthcare professionals wish to take a proactive approach to assistive devices, but a number of bureaucratic obstacles occur. The study findings are preliminary and should be validated through a prospective national quality registry for motor neuron diseases.
... In addition, caregivers' needs for consultation or psychiatric intervention were identified (Williams et al., 2008). The patient and partner's loss of intimacy (Aoun et al., 2012;Taylor, 2014) and sexuality (Taylor, 2014;Wasner, Bold, Vollmer, & Borasio, 2004) were also identified and were cited as problems that needed support (Wicks & Frost, 2008). ...
... In addition, caregivers' needs for consultation or psychiatric intervention were identified (Williams et al., 2008). The patient and partner's loss of intimacy (Aoun et al., 2012;Taylor, 2014) and sexuality (Taylor, 2014;Wasner, Bold, Vollmer, & Borasio, 2004) were also identified and were cited as problems that needed support (Wicks & Frost, 2008). ...
Aims and objectives:
To identify the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, categorise and summarise them into a Supportive Care Needs Framework and identify gaps in literature.
Background:
Little is known about the supportive care needs of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, and this subject has not previously been systemically reviewed.
Design:
Scoping review.
Methods:
We conducted a scoping review from the MEDLINE, EMBASE, CINAHL and Cochrane databases for the period January 2000-July 2016, using the following inclusion criteria: (i) written in English only, (ii) published in peer-reviewed journals, (iii) at least part of the research considered the supportive care needs perspective of amyotrophic lateral sclerosis/motor neuron disease patients or their caregivers and (iv) the population sample included patients of amyotrophic lateral sclerosis/motor neuron disease or their caregivers.
Results:
Thirty-seven articles were included. Our review shows that amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers' supportive care needs were mentioned across all seven domains of the Supportive Care Needs Framework. Most common were practical needs (n = 24), followed by Informational needs (n = 19), Social needs (n = 18), Psychological needs (n = 16), Physical needs (n = 15), Emotional needs (n = 13) and Spiritual needs (n = 8).
Conclusion:
From the perspectives of amyotrophic lateral sclerosis/motor neuron disease patients and their caregivers, there is a significant need for more practical, social, informational, psychological, physical, emotional and spiritual support.
Relevance to clinical practice:
The Supportive Care Needs Framework has potential utility in the development of patient-centred support services or healthcare policies and serves as an important base for further studies; especially, specific examples of each supportive care needs domain can guide in clinical settings when healthcare professionals provide multidisciplinary care to amyotrophic lateral sclerosis/motor neuron disease patients and individualised care.
... This article discusses one of the findings from a larger English study [9] that considered sexuality and intimacy in people living with life-limiting illness. Findings reported elsewhere discuss sexuality and intimacy being experienced as 'connecting' with a partner [10], the barriers to physical intimacy when living with MND [11] and the impact of equipment on couples' relationships [12]. This paper draws upon a further theme arising from this study and discusses the impact of caring on intimacy and sexual expression. ...
... All audio-recorded interviews were transcribed verbatim and pseudonyms assigned. An iterative process of reading, re-reading and interpreting the transcripts was employed [11]; this is consistent with Heidegger's hermeneutic circle of interpretation [14]. ...
The experiences of people with motor neuron disease (MND) and their partners are rarely reported in research on sexuality. The little research that considers sexuality in this population has found that sexual expression remains important, even when there is extensive disability. Healthcare texts suggest that when partners are required to provide personal care, this impacts upon the couple’s sexual relationship.
As part of a larger Heideggerian phenomenological study to understand the experiences of sexuality and intimacy for people living with life-limiting illness, thirteen people with MND and ten partners of people with MND were recruited. Using unstructured, conversational interviews, participants were asked to describe their experiences of sexuality and intimacy (these terms were not defined so that whatever was considered important to them would emerge).
The findings from this study enhance our understanding of partners’ caring role within coupled relationships. Although, for some, performing intimate caring tasks precludes any sexual intimacy, this is not always the case. When partners assume the role of care-giver, and the person with a disability assumes a dependent, care-receiver role, the equality in couples’ relationships diminishes. It is this imbalance that can impact upon their sexual and intimate relationship, regardless of whether the care that is given is physically intimate. The implications for health and social care professionals are considered.
... When people are diagnosed with a life-threatening diagnosis, they begin to reevaluate what is meaningful in their lives. This may include redefining the value and importance of sexual relationships [44]. The sexual aspects of ALS need to be discussed and addressed. ...
Sexuality is among the subjects that individuals diagnosed with ALS do not talk about. Focusing on the physical problems caused by the disease, condemnation, and contempt for the sexuality of the sick individual may prevent the patient from expressing one’s wishes and problems. The fact that the quality of sexual life can affect marital satisfaction is a widely accepted topic. This study was conducted to determine the relationship between sexual quality of life and marital satisfaction in individuals diagnosed with ALS. Fifty-two individuals diagnosed with ALS were included in this descriptive cross-sectional study. The patients’ SQLQ (Sexual Quality of Life Questionnaire) scores were low and Marriage Satisfaction Scores (MSS) were moderate. A statistically significant negative correlation was found between the Sexual Life Quality Questionnaire (SQLQ) and age and marital satisfaction self sub-dimension. Health professionals should consider the sexuality dimension in patient care treatment and include sexual rehabilitation in their treatment plans.
Date Presented 04/01/2022
This descriptive study explored concerns related to sexual intimacy and how to address the subject for persons with amyotrophic lateral sclerosis (ALS) and their partners. Twenty-seven participants shared experiences and concerns, through qualitative and quantitative data, regarding the impact of ALS on the activity of daily living (ADL) that is sexual intimacy. The study’s findings illustrate a need for OTs to use the data presented and provide both information and holistic care to the population with ALS .
Primary Author and Speaker: Victoria Ramirez
Contributing Authors: Carlayne Jackson, Autumn Clegg, Ana Allegretti
Este capítulo apresenta a intervenção do enfermeiro especialista em enfermagem de reabilitação à pessoa com doença neurológica degenerativa, a nível da reeducação cognitiva, sensorial, motora, cardiorrespiratória, eliminação e sexualidade. As principais doenças neurológicas degenerativas abordadas são: Doença de Parkinson; Doença de Huntingon; Esclerose Múltipla; Doença do Neurónio Motor e Esclerose Lateral Amiotrófica.
A primary goal of palliative care is to provide “active total care” and improve quality of life of the person and their family. As sexuality is an integral part of the uniqueness and personality of every human being, failure to acknowledge this aspect of an individual in the palliative care context implies failure to acknowledge personhood. Navigating changes in sexual function and relationships is challenging for all people; however, for people who have a diagnosis of life-limiting illness, there are extra challenges and losses. Despite living in the “shadows of impending death,” evidence suggests that the expression of sexuality and the need to connect in an intimate way continues to be an important part of people’s lives, even in the last weeks and days of life. This chapter explores the impact of life-limiting illness on sexual expression and provides some guidance to practitioners in responding to people’s needs. The chapter moves beyond the binary division of gender and heterosexual relationships to discuss the needs of people who identify as LGBT and those who experience disenfranchised grief. While sexuality and sexual expression is a positive force in many people’s lives, for others, it is a source of trauma and distress, and palliative care practitioners need to be aware of issues, such as sexual trauma and sexual disinhibition, and be in a position to create a safe accepting space, where people feel safe, validated, and supported.
This paper discusses the limitations in the way that healthcare practitioners may use Annon’s PLISSIT model in meeting the
sexual wellbeing needs of individuals with an acquired disability and presents the merits of the extended model, Ex-PLISSIT.
Key features of this model include explicit Permission-giving as a core feature of each of the other stages, the requirement
to review all interactions with patients, and the incorporation of reflection as a means of increasing self-awareness by challenging
assumptions.
The rejection of reliability and validity in qualitative inquiry in the 1980s has resulted in an interesting shift for "ensuring rigor" from the investigator's actions during the course of the research, to the reader or consumer of qualitative inquiry. The emphasis on strategies that are implemented during the research process has been replaced by strategies for evaluating trustworthiness and utility that are implemented once a study is completed. In this article, we argue that reliability and validity remain appropriate concepts for attaining rigor in qualitative research. We argue that qualitative researchers should reclaim responsibility for reliability and validity by implementing verification strategies integral and self-correcting during the conduct of inquiry itself. This ensures the attainment of rigor using strategies inherent within each qualitative design, and moves the responsibility for incorporating and maintaining reliability and validity from external reviewers' judgements to the investigators themselves. Finally, we make a plea for a return to terminology for ensuring rigor that is used by mainstream science.
To explore the ways that patients and health professionals communicate about intimate and sexual changes in cancer and palliative care settings.
A qualitative study using a three-stage reflexive-inquiry approach, with semi-structured, participant interviews (n = 82); textual analysis of national and international cancer and palliative care clinical practice guidelines (n = 33); and participant feedback at 15 educational forums for cancer patients or health professionals.
A large Australian public teaching hospital between 2002 and 2005.
50 patients diagnosed with cancer, and 32 health professionals who had worked in cancer and/or palliative care for a minimum of 12 months.
Communication about intimacy and sexuality: patients' needs and experiences and health professionals' attitudes and experiences.
There were mismatched expectations between patients and health professionals and unmet patient needs in communication about sexuality and intimacy. Most patients sought information, support and practical strategies about how to live with intimate and sexual changes after treatment for cancer, even if their cancer type did not affect fertility or sexual performance. In contrast, many health professionals assumed that patients shared their professional focus on combating the disease, irrespective of the emotional and physical costs to the patient. Health professionals overwhelmingly limited their understanding of patient sexuality to fertility, contraception, menopausal or erectile status. Many stereotypical assumptions were made about patient sexuality, based on age, sex, diagnosis, culture, and partnership status. There was a relationship between providing patient-centred communication about intimacy and sexuality and health professionals' understanding of their own attitudes and beliefs.
Resources are needed to help health professionals engage in an exploration of their own definitions of intimacy and sexuality and understand how these affect interactions with patients with cancer.
Our objective was to determine change over time in quality of marital relationships of people with ALS (pwALS). Fifty pwALS and their spouse carers completed measures of marital intimacy, pwALS's functional status, their own psychological status, and beliefs about the pwALS's illness. Twenty-seven dyads completed two further assessments, at six-monthly intervals. Post-ALS diagnosis ratings of current marital relationship did not change over time for pwALS or their spouses. However, spouse carers' ratings of their current marital relationship were lower than their ratings prior to illness onset. After adjusting for the pre-illness marital relationship, pwALSs' current ratings of their marital relationship were initially predicted by their self-rated psychosocial functional impairment and satisfaction with their personal relationships, and subsequently by levels of self-esteem. After adjusting for ratings of the pre-illness marital relationship, carers' current marital intimacy scores at first and second interview were predicted by ratings of the patients' psychosocial functional impairment and by feelings of burden at the third interview. In conclusion, quality of the pre-illness marital relationship is a significant predictor of ongoing marital relationship in both pwALS and their spouse carers. Additionally, social and psychological rather than disease symptoms are important predictors of marital relationship quality after ALS diagnosis.
Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.
Stereotypes of an asexual old age remain pervasive, shaping not only popular images of older people, but also research and policy agendas. However, older people's own attitudes towards the role and value of sex in later life remain relatively unexplored. This paper draws on both quantitative and qualitative data to examine how sex is prioritised in middle age and later life. Data collection methods involved completion of two quality of life measures (WHOQOL-100 and WHOQOL Importance Scale), followed by semi-structured interviews. In total the sample comprised 69 individuals recruited from the age/sex register of a general practice in Sheffield in the UK. This paper will focus upon the accounts of 21 men and 23 women aged 50-92 years. Ratings of the importance of sex to participants were gathered from the WHOQOL Importance Scale; the in-depth interviews enabled the basis for this prioritisation to be explored. Analysis identified the following key themes. Participants who did not consider sex to be of any importance to them neither had a current sexual partner, nor felt that they would have another sexual partner in their lifetime. Indeed, all participants who had a current sexual partner attributed at least some importance to sex, with many rating sex as 'very' or 'extremely' important. However, experiencing barriers to being sexually active led them to place less importance on sex; this was particularly apparent when health problems and widowhood were experienced. Age was seen as facilitating coping when sex became less frequent, or stopped altogether. This was explained in terms of sexual desire decreasing with age (for some male participants), the cessation of sex being easier to cope with in a relationship of long duration and the expectation that sex will become less possible with 'normal ageing'. The discussion considers the implications of these findings for this developing field.
Sexuality in patients with amyotrophic lateral sclerosis (ALS) has received little attention so far. Although sexual function is not directly affected by the disease process, several patients have reported problems within their sexual relationship. We performed a questionnaire survey to ascertain the extent and clinical relevance of sexual problems experienced by patients with ALS and their partners. Of 91 patients and partners asked, 62 agreed to participate in the study. Compared with the time before disease onset, sexual interest had decreased from 72% to 44% for patients and from 78% to 44% for partners. Sexual activity had moderately decreased from 94% to 76% for the patients and from 100% to 79% for the partners. Before the disease, 19% of the patients and 20% of the partners reported sexual problems. This increased to 62% of the patients and 75% of the partners at time of survey. The problems reported were mainly decreased libido, passivity of the partner and own passivity. The most frequent reasons for these problems were the physical weakness and the body image changes due to ALS. The data show that sexuality is an important and problematic issue for a large proportion of ALS patients and their partners. This topic is rarely discussed in the medical setting. Counselling and information should be made available in order to better address this important aspect of quality of life.
Much has been published related to the epistemology of Heideggerian hermeneutic research. We seek to reveal insights from our experience of enacting such research.
To articulate the lived experience of 'doing' Heideggerian hermeneutic research.
The authors of this paper shared their experiences with the primary author towards articulating the process of 'doing' such research.
The authors all have long experience with Heideggerian hermeneutic research and meet regularly at the Institute for Interpretive Phenomenology. They supervise student's research and are mindful of the process of coming to understand how to work in a phenomenological/hermeneutic manner.
First the section on philosophical underpinnings was written by the primary author and then shared with all authors. There was published data related to the experience of three of the participants already available. This provided a spring board to further conversations when the primary author visited America, able to engage in daily conversations with three of the co-authors. In the spirit of phenomenology this paper represents a process of reading, talking, writing, talking, reading, re-writing, re-talking and so forth.
The process of doing hermeneutic phenomenology is represented as a journey of 'thinking' in which researchers are caught up in a cycle of reading-writing-dialogue- which spirals onwards. Through such disciplined and committed engagement insights 'come'. The researcher is always open to questions, and to following a felt-sense of what needs to happen next. However, it is not a process of 'do whatever you like' but rather a very attentive attunement to 'thinking' and listening to how the texts speak.
This paper argues that alongside a disciplined understanding of the methodology, both researcher and reader need to share a commitment to 'thinking' which is willing to question, and open to trusting the resonance of understanding that 'comes' without expecting answers that are declared 'truth' for all time.
Acknowledging the increasing diversity and complexity of families, this innovative book proposes a new conceptual framework for understanding families and other relationships that both challenges and attempts to reconcile traditional and contemporary approaches. Using the notion of ‘boundaries’, the book shifts thinking from ‘families as entities’ to ‘families as relationship processes’. Emphasising the processes that underlie boundary construction and reconstruction suggests that the key to understanding family life is the process of relationship formation. The ideas of entity, boundary, margins and hybridity provide a framework for understanding the diverse, and often contradictory, ways in which families contribute to society. Families in society makes a significant contribution to the academic literature on families and is essential reading for social science students, social researchers, policy makers and practitioners interested in families and relationships.
Sexuality assessment and counseling are part of the nurse's professional role, but few nurses integrate this awareness into practice. Findings of this study suggest that educational programs are needed to help nurses develop confidence and comfort in dealing with patient sexuality.
This chapter focuses on practices of intimacy, moving the book from an analysis of families to relationships more widely. It notes that there are contradictory claims about the meaning and significance of intimacy and that there has been attention to boundaries in the conceptualisation of intimacy as well as in how it is practised. Typically, two main boundaries have been identified: boundaries between the familial and non-familial, although these are becoming increasingly blurred; and exclusionary boundaries between intimates (traditionally typified as couples) and the wider community, although again this boundary may be contested. The chapter contends that not all practices of intimacy require exclusionary boundaries and that boundaries have been overemphasised in the conceptualisation of intimacy.
Community Palliative Care examines the complex support and information needs of seriously ill patients and their families and will encompass not only the patient's journey, but that of the family during the illness trajectory and into the bereavement period. The text is divided into three sections- professionals, patients and carers. The first section discusses the roles and contributions made by other members of the primary health care team and examines the role of the nurse. Section two explores the psychosocial support needed by patients receiving palliative care, and looks at the community palliative care clinical nurse specialists' role in relation to psychological, as well as practical problems surrounding a life threatening illness. The final section will look at the needs of the family and carers and the support that the community palliative care clinical nurse specialist can offer to the individuals. Included in this segment will be the complex issues faced by carers in relation to the changing roles within the family, children, death and bereavement.
Background:
There is a paucity of research considering sexuality and intimacy in palliative care. It is therefore unclear whether palliative care professionals have a role in addressing these issues with patients and their partners.
Aim:
To understand people's experiences of sexuality and intimacy when living with a terminal illness.
Design:
A Heideggerian hermeneutic (interpretive) phenomenological study was undertaken. Data were collected using one-to-one conversational interviews. An iterative approach to analysing the narratives was used to reveal shared meanings.
Setting/participants:
A total of 27 patients and 14 partners of patients with either cancer or motor neuron disease were recruited from outpatient, community and hospice inpatient units. All participants were aware that the illness was life-limiting.
Findings:
When someone is living with a life-limiting illness, their coupled relationship is also dying. In their being-towards-death-of-the-couple, patients and partners of patients with motor neuron disease and terminal cancer experienced connecting and disconnecting within their coupled relationship. Becoming-apart-as-a-couple was experienced as loss of spontaneity, as lack of reciprocity and as rejection. This was influenced by a range of factors including medical treatments, disfigurement and the disabling effects of equipment. Some participants experienced re-connecting through becoming-closer-as-a-couple, although this was not always sustained.
Conclusions:
This study sheds new light on people's experiences of sexuality and intimacy when living with a terminal illness. The ethos of holistic care requires palliative care professionals to provide opportunities for patients and their partners to discuss any concerns they might have about their coupled relationship and to understand the meanings symptoms have for them.
Introduction: Sexuality is a holistic concept that involves more than the sexual act. Despite being a quality of life domain that promotes meaningful existence, it is an
aspect of life that is often avoided by health care practitioners.
Method: In this Heideggerian phenomenological study, conversational interviews
were conducted with 13 people with motor neurone disease, and 10 of their partners,
in order to understand their experiences of sexuality and intimacy.
Findings: The findings provide evidence for the value of touch in people’s lives
and shed light upon the impact that assistive equipment has on intimacy, sexual
expression and maintaining emotional and physical connection between couples.
None of the people interviewed had previously been given the opportunity to
discuss these issues with their occupational therapist.
Conclusion: There is a place in occupational therapy practice for discussing the
value of emotional and physical connection for individuals in the context of any
equipment provided.
Cancer often has a profound and enduring impact on sexuality, affecting both patients and their partners. Most healthcare professionals in cancer and palliative care are struggling to address intimate issues with the patients in their care.
Study 1: An Australian study using semi-structured interviews and documentary data analysis. Study 2: Building on this Australian study, using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewing 15 cancer patients, 13 partners and 20 healthcare professionals working in cancer and palliative care. The hermeneutic analysis was supported by ATLAS.ti and enhanced by peer debriefing and expert consultation.
For patients and partners a person-oriented approach is a prerequisite for discussing the whole of their experience regarding the impact of cancer treatment on their sexuality and intimacy. Not all healthcare professionals are willing or capable of adopting such a person-oriented approach.
A complementary team approach, with clearly defined roles for different team members and clear referral pathways, is required to enhance communication about sexuality and intimacy in cancer and palliative care. This approach, that includes the acknowledgement of the importance of patients' and partners' sexuality and intimacy by all team members, is captured in the Stepped Skills model that was developed as an outcome of the Dutch study.
This pilot project aimed to (1) identify the current status (eg, unique issues, needs, resources, and challenges) of hospice patients' concerns regarding sexual health and (2) document the perceptions of hospice nurses regarding their understanding of the patients' concerns regarding sexual health. The synthesis of these data indicates that a more comprehensive assessment and understanding of sexual health in the life of the hospice patients are needed. The findings document that hospice patients persisted in having unmet needs even in late-stage disease.
Nurses, by virtue of the close relationship with patients, are in a unique position to promote sexual health and provide sexual health advice to people in their care. Although nurses espoused the ideals of person-centred and holistic care, evidence from research studies suggested that, for a number of reasons, nurses did not consciously and proactively engage with patients in relation to sexual concerns. In today health-care environment, where patients are seeking information about the impact of illness and treatments on their sexual function, nurses have a responsibility to proactively engage with patients’ sexual health concerns in an informed and sensitive manner. The aim of this paper is to provide nurses with guidelines on how they might include this aspect of care within their everyday work.
This qualitative study investigated the meaning of sexuality to palliative patients. Face-to-face interviews were conducted with ten patients receiving care in a tertiary palliative care unit, a hospice or by palliative home care services in their homes. Several themes emerged. Emotional connection to others was an integral component of sexuality, taking precedence over physical expressions. Sexuality continues to be important at the end of life. Lack of privacy, shared rooms, staff intrusion and single beds were considered barriers to expressing sexuality in the hospital and hospice settings. Only one subject had previously been asked about sexuality as part of their clinical care, yet all felt that it should have been brought up, especially after the initial cancer treatments were completed. Home care nurses and physicians were seen as the appropriate caregivers to address this issue. Subjects unanimously mentioned that a holistic approach to palliative care would include opportunities to discuss the impact of their illness on their sexuality.
Sexual relationships remain an important aspect of life for people living with motor neurone disease. This article explores the use of the Extended-PLISSIT model when discussing relationships and sexual function with patients and their partners in a motor neurone disease clinic. The model provides a structured approach to assist discussions with patients as well as promoting reflection and exchange of knowledge in the multidisciplinary team. It is a useful model when addressing issues that are sometimes difficult to discuss.
Despite increasing awareness related to sexual health for breast cancer survivors, health care providers are passive in addressing their sexual issues.
The aims were to develop and investigate the effect of a sexual life reframing program on marital intimacy, body image, and sexual function (interest, dysfunction, and satisfaction) among breast cancer survivors.
Breast cancer survivors participated in this quasi-experimental study. The sexual life reframing program focused on the physical, psychological, and relational aspects of sexual health elements, and it consisted of 6 weekly 2-hour sessions.
The participants reported poor body image and sexual function. There were no statistically significant differences in marital intimacy, body image, sexual interest, and sexual dysfunction following the program, although all the variables in the intervention group were improved. The sexual life reframing program was effective in increasing sexual satisfaction among breast cancer survivors.
This study suggests that the quality of sexual life in breast cancer survivors could be improved with the sexual life reframing program provided as part of supportive group care. This program may be more effective if targeted at couples rather than survivors only and if delivered earlier and for a longer period.
The sexual life reframing program offers an opportunity to facilitate small-group dynamics that lay the ground for further contacts leading to earlier recognition of sexual problems and active involvement for sexual health improvement for breast cancer survivors and nurses. It could be utilized for survivor education or support groups to increase sexual satisfaction.
This paper is a report of a study of Registered Nurses' attitudes and beliefs towards discussing sexuality with patients.
The World Health Organization regards sexuality as an essential and integrated part of being human. Studies show that diseases and treatments can affect sexuality and that a positive and respectful attitude towards sexuality is important to achieving sexual health.
The study had a correlative and comparative design. The Sexual Attitudes and Beliefs Survey was distributed to a convenience sample of 100 Swedish nurses in 2006, with a response rate of 88%.
Over 90% of nurses understood how patients' diseases and treatment might affect their sexuality. About two-thirds felt comfortable talking about sexual issues and agreed that it was their responsibility to encourage talk about sexual concerns. However, 80% did not take time to discuss sexual concerns, and 60% did not feel confident in their ability to address patients' sexual concerns. Older nurses felt more confident in their ability to address patients' sexual concerns, and the older the nurses, the more positive were their attitudes towards discussing sexuality. Nurses with further education also had a more positive attitude towards discussing sexuality.
Education is essential to improve nurses' ability to give patients the holistic care they deserve. Studies are needed to understand fully what mechanisms underlie the barriers that clearly prevent nurses from addressing patients' sexuality.
Over 1200 patients with motor neuron disease have been carefully diagnosed, followed, and included in a detailed database delineating characteristics of the disease. Of these patients, 831 were identified as exhibiting typical, sporadic amyotrophic lateral sclerosis (ALS). The progression of the disease in these patients has been followed with our scoring system, and the ALS score was verified as a significant covariate of survival. Age at first symptom, delay from first symptom to entering ALS clinic, and rate of change of respiratory function were also identified as significant covariates of survival. These measures, applied to the Cox proportional hazards model, were used to develop a mathematical model for prediction of survival time in ALS, which proved highly accurate for the 80% of patients at intermediate risk. For those patients, a second model was developed which accurately predicts, after an initial period of observation, the time over which ALS patients will decline a set number of points in total ALS score. Such validation permits initial trials for drug therapies in ALS by comparison of relatively small groups of treated patients to this historical control group, based on the model of predicted time to a particular decrement in total ALS score.
For many years society viewed the spinal cord injured person as an asexual being. Within the past 10 years health care providers have recognized the need to incorporate information sexuality into the care of this population. This article reviews the physiologic and psychologic changes experienced by the spinal cord injured person, explores methods of enhancing the physiologic function inherent in the sexual experience, and presents nursing's role in sexual counseling.
Although over 50% of individuals over the age of 65 live with at least one chronic illness, little research has been conducted on the individual lived experience. For this phenomenological study, 12 individuals living with any long-term illness participated in extended, non-structured, audio-recorded interviews. Resulting verbatim transcripts were analysed hermeneutically using Heideggerian phenomenology as the philosophical framework. The pattern 'my death nearing its future' emerged from this research. The understandings gained from these individual narratives provide important insight for all individuals interacting with persons living with chronic illness.
The literature lacks descriptions of the effect that breast cancer treatments have on sexuality from the perspective of women who have lived through this experience. The purpose of this study was to describe aspects of sexuality that were important to women after breast cancer treatment. Participants in this study were 18 white women with breast cancer between the ages of 35 and 68 years (mean, 50.5 years). Time since diagnosis ranged from 6 months to more than 10 years. Primary surgical treatment for seven women (39%) had been lumpectomy, and for 11 women (61%) mastectomy. Most of the participants also received adjuvant chemotherapy. This qualitative descriptive study used grounded theory methods. Two primary categories (losses and influencing pieces) emerged from the data analysis. The losses category had four components: missing parts, loss of bleeding-becoming old, loss of sexual sensations, and loss of womanhood. The influencing pieces were relationships and information control. The core concept identified was an altered sexual self. Central to the task of adjustment to living with breast cancer was coming to terms with a new sexual self that emerged after treatment. Women who sought information about the sexual side effects of cancer treatment, and who had strong intimate relationships appeared to experience a more successful adjustment.
Amyotrophic lateral sclerosis (ALS), or motor neuron disease (MND) as it is usually termed in the United Kingdom, is a fatal degenerative disease resulting in progressive weakness and wasting of voluntary muscles. The disease is caused by degeneration of upper motor neurons in the motor cortex and of lower motor neurons in the brainstem and spinal cord. This combined loss of function causes spastic paralysis, flaccid muscle weakness, wasting, and fasciculations. The disease process spares the sensory, autonomic, and oculomotor neurons. ALS is the most common of the MND syndromes in adults. Although the cause of ALS is unknown, there is evidence that the excitatory neurotransmitter glutamate plays an important role in neuronal cell death in the disease. Several risk factors, such as exposure to welding and soldering, inhalation of lead vapor, exposure to chemicals, and electrical trauma are postulated as contributing to the pathogenesis of ALS. About 90% of all ALS patients have the sporadic form. Approximately 20% of all familial ALS cases are associated with mutations of the copper/zinc superoxide dismutase-1 gene. What is not clear is what factors contribute to the causation of the more common sporadic cases. The drug riluzole has neuroprotective effects in ALS and is the only disease-specific treatment available to date. Riluzole has been approved by the National Institute for Clinical Excellence for use in the National Health Service of the United Kingdom. Other treatments are aimed at managing the devastating symptoms of ALS.
This survey was carried out to study the views of multidisciplinary health professionals about discussing sexual issues with patients.
A questionnaire was sent to professionals (nurses, doctors, physiotherapists and occupational therapists) to return by post. A duplicate questionnaire was sent 4 weeks later to a random sample of respondents.
A total of 813 replies were analysed (61% response rate). Mean age+(SD) of respondents was 37+10. Most were female (85%). Test-retest reliability of the questions showed moderate to very good agreement. Most respondents (90%) agreed that addressing sexual issues ought to be part of the holistic care of patients. However, most staff (86%) were found to be poorly trained and most (94%) were unlikely to discuss sexual issues with their patients. The gender and age of respondents was not significantly related to their participation in such discussion. Therapists had less training, lower comfort level, and less willingness to discuss sexual issues than doctors and nurses while doctors discussed sexual issues significantly often more than others (p< or =0.001). Respondents from rehabilitation wards were equivalent to those from medical or surgical wards in their training and comfort. However, they participated in discussing sexuality with patients less often than those from medical wards.
Health professionals agreed that patients' sexual issues needed to be addressed and discussed in health services. However, they were poorly trained, ill prepared and rarely participated in such discussion. This suggests that training in sexuality and sexual issues should be implemented as part of the training of health care professionals.
Non-invasive ventilation (NIV) is an efficient palliative measure for symptoms of chronic hypoventilation in patients with amyotrophic lateral sclerosis (ALS), and can also lengthen survival. A subset of ALS patients undergoes tracheostomy ventilation (TV) for life prolongation. We investigated the quality of life (QOL) and psychosocial situation of 52 home ventilated ALS patients and their caregivers. The battery included sociodemographic, generic, and disease-specific variables, as well as the Profile of Mood States and the Munich Quality of Life Dimensions List. Data were compared between the NIV (n=32) and the TV (n=21) groups. Mean ventilation time was 14 months for NIV and 35 months for TV. Eighty-one percent of TV patients had been tracheotomized without informed consent. The data show a good overall QOL for both NIV and TV patients, but a very high burden of care for TV caregivers, 30% of whom rated their own QOL lower than their patient's QOL. Sexuality was an important issue. Thus, any assessment of QOL in a home palliative care situation should include the primary caregivers.
This paper reports a critical review of published nursing research for expressions of rigour in interpretive phenomenology, and a new framework of rigour specific to this methodology is proposed.
The rigour of interpretive phenomenology is an important nursing research methods issue that has direct implications for the legitimacy of nursing science. The use of a generic set of qualitative criteria of rigour for interpretive phenomenological studies is problematic because it is philosophically inconsistent with the methodology and creates obstacles to full expression of rigour in such studies.
A critical review was conducted of the published theoretical interpretive phenomenological nursing literature from 1994 to 2004 and the expressions of rigour in this literature identified. We used three sources to inform the derivation of a proposed framework of expressions of rigour for interpretive phenomenology: the phenomenological scholar van Manen, the theoretical interpretive phenomenological nursing literature, and Madison's criteria of rigour for hermeneutic phenomenology.
The nursing literature reveals a broad range of criteria for judging the rigour of interpretive phenomenological research. The proposed framework for evaluating rigour in this kind of research contains the following five expressions: balanced integration, openness, concreteness, resonance, and actualization. Balanced integration refers to the intertwining of philosophical concepts in the study methods and findings and a balance between the voices of study participants and the philosophical explanation. Openness is related to a systematic, explicit process of accounting for the multiple decisions made throughout the study process. Concreteness relates to usefulness for practice of study findings. Resonance encompasses the experiential or felt effect of reading study findings upon the reader. Finally, actualization refers to the future realization of the resonance of study findings.
Adoption of this or similar frameworks of expressions of rigour could help to preserve the integrity and legitimacy of interpretive phenomenological nursing research.
Amyotrophic lateral sclerosis (known in the UK as motor neuron disease) is a devastating illness with uncertain pathogenesis. In this Seminar, we review its natural history, clinical features, diagnostic criteria, variant and mimic syndromes, genetic forms, and epidemiology. Several hypotheses about causes of the disorder are discussed, such as excitotoxicity and oxidant stress, and we review past and present putative disease-modifying treatments. Disease-management strategies, from telling the patient about their illness to end-of-life decisions and palliative care, are presented. We review options for control of the main symptoms of amyotrophic lateral sclerosis--including dysphagia, dysarthria, respiratory distress, pain, and psychological disorders--and care in the terminal phase. The need for good psychosocial and spiritual care of patients and families is emphasised. We conclude with an overview of some current major issues and future prospects, ranging from the search for disease markers to challenging developments such as stem-cell and gene therapy.
The current study investigated the impact of neurological illness on marital relationship satisfaction. Participants numbered 423 patients and 335 carers from motor neurone disease (MND), Huntington's disease (HD), Parkinson's, and multiple sclerosis (MS). The results demonstrated that patients and carers with HD had a significantly lower level of relationship satisfaction and sex life satisfaction than the other three illness groups. Further, patients with HD indicated a significantly higher level of relationship satisfaction than their carers. For MS and MND patients, social support predicted marital relationship satisfaction, and for Parkinson's patients, social support and sex life satisfaction predicted marital relationship satisfaction.
At present there are few data available on the experiences of closeness in partners of patients with advanced cancer. The aim of this study was to explore the lived experience of closeness in partners of patients with advanced cancer in palliative home care. Ten partners of patients admitted to a palliative, hospital-based home care unit participated in this study. Tape-recorded interviews were conducted and Giorgi's phenomenological analysis was used. Three themes emerged: dimensions of closeness, such as togetherness, sharing and daily concern; prerequisites for closeness; and obstacles that hindered closeness. In essence, closeness was described as a changing process that was expected to end. This study has revealed the importance of closeness in the partners of patients with advanced cancer. Experiencing closeness is of great importance when the disease is no longer curable and time is limited. Partners need professional help to facilitate this experience.
Experiencing a diagnosis of cancer may dramatically alter the way a person feels about themselves, their body, and their significant relationships with others at sexual and intimate levels. The purpose of this article is to provide a critical analysis of the way patient sexuality and intimacy has been constructed throughout cancer and palliative care literature. A critique of 3 well-cited communication frameworks for health professionals: the PLISSIT, ALARM, and BETTER models, will be offered. In summary, a dominant emphasis throughout the literature explores the narrow relationship between cancer treatments and the impact of those treatments on patient sexual function or dysfunction, so that patient sexuality and intimacy are inextricably limited to fertility, contraception, menopausal, erectile functional, or capacity for intercourse. Few studies explore sexual or intimate issues that have arisen in the face of life-threatening illness, particularly when patients are older than 65 years. Despite being well cited during the past 30 years, the PLISSIT and ALARM counseling models are outdated in terms of more reflective, patient-centered, and negotiated forms of communication promoted throughout clinical practice guidelines and patient feedback in qualitative research. The BETTER communication model provides a significant step in assessing and documenting the patient's experience of sexuality after cancer.
Being diagnosed with a life-limiting condition is a traumatic event. The journey to the moment of death is usually only done once--so it is a time of fears and uncertainty. Sexuality is particularly vulnerable at this time. It may be difficult for both patient and partner to deal with the changes in sexuality without professional assistance. It is "sexuality" rather than "sex" that defines the meaningful relationships people have with themselves and significant others. When sexuality is lost or changed, important benefits may be lost. Studies show that many patients do value sexuality and want assistance in making the best of their sexual potential during the palliative care phase. Health professionals regularly acknowledge the importance of sexuality for their patients but have difficulties acting on their beliefs. Sexuality, within the patient's functional ability and desire for it, must be acknowledged and included in holistic management. It is the health professional's responsibility to raise this issue.
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