Article

Sexuality, intimacy and motor neuron disease: matters of concern

Authors:
  • Sir Michael Sobell House Hospice, Oxford, UK
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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.

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... 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. ...
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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). ...
Article
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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]. ...
Article
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. ...
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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.
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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.
Article
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.
Article
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.
Article
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.
Article
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.
Article
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.
Article
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.
Article
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.
Article
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.
Shadow in Tiger Country: One Last Year of Love
  • L Arthur
  • T Arthur
Arthur L, Arthur T (2000) Shadow in Tiger Country: One Last Year of Love. Harper Collins, London.
Sexuality and Intimacy in Cancer and Palliative Care in the Netherlands: A Hermeneutic Study Stepped skills: a team approach towards communication about sexuality and intimacy in cancer and palliative care
  • P Brock
Brock P (2004) A Passion for Life. ABC Books, Sydney de Vocht H (2011) Sexuality and Intimacy in Cancer and Palliative Care in the Netherlands: A Hermeneutic Study. PhD thesis, Birmingham City University, Birmingham de Vocht H, Hordern A, Notter J, van de Wiel H (2011) Stepped skills: a team approach towards communication about sexuality and intimacy in cancer and palliative care. Australas Med J 4(11): 610–9
At the Will of the Body: Reflections on Illness Truth and Method. Crossroad Sexuality and palliative care Palliative Care: The Nursing Role
  • A Frank
Frank A (2002) At the Will of the Body: Reflections on Illness. Mariner Books, New York NY Gadamer H (1982) Truth and Method. Crossroad, New York NY Gamlin R (2005) Sexuality and palliative care. In: Lugton J, McIntyre R (Eds.) Palliative Care: The Nursing Role (2nd edn). Elsevier, London: 199–22
Intimacy and sexuality after cancer: a critical review of the literature
  • A Hordern
Hordern A (2008) Intimacy and sexuality after cancer: a critical review of the literature. Cancer Nurs 31(2): 9-17
If you don't ask me … don't expect me to tell
  • M Matzo
  • K Hijjazi
Matzo M, Hijjazi K (2009) If you don't ask me … don't expect me to tell. J Hosp Palliat Nurs 11(5): 271–81
Nursing Research: A Qualitative Perspective Jones and Bartlett Publishers International, London National Council of Hospice and Specialist Palliative Care Services (1993) Specialist Palliative Care: A Statement of Definitions
  • P Munhall
Munhall P (2007) Nursing Research: A Qualitative Perspective. 4th edn. Jones and Bartlett Publishers International, London National Council of Hospice and Specialist Palliative Care Services (1993) Specialist Palliative Care: A Statement of Definitions. Land and Unwin, Northampton.
The impact of neurological illness on marital relationships
  • O ' Connor
  • E Mccabe
  • M Firth
O'Connor E, McCabe M, Firth L (2008) The impact of neurological illness on marital relationships. J Sex Marital Ther 34(2): 115–32
The sexual being. In: Peate I, ed, Nursing Care and the Activities of Living
  • I Peate
Peate I (2010) The sexual being. In: Peate I, ed, Nursing Care and the Activities of Living. Wiley-Blackwell, Chichester: 236-254.
Sexuality and Sexual Health in Nursing Practice Discussing sexuality with patients: nurses' attitudes and beliefs
Royal College of Nursing (2000) Sexuality and Sexual Health in Nursing Practice. Royal College of Nursing, London Saunamäki N, Andersson M, Engström M (2010) Discussing sexuality with patients: nurses' attitudes and beliefs. J Adv Nurs 66(6): 1308–16
Motor Neurone Disease: A Practical Manual The extended PLISSIT model for addressing the sexual wellbeing of individuals with an acquired disability or chronic illness
  • K Talbot
  • R Turner
  • R Marsden
  • R Botell
Talbot K, Turner R, Marsden R, Botell R (2010) Motor Neurone Disease: A Practical Manual. Oxford University Press, Oxford © 2014 MA Healthcare Ltd Taylor B, Davis S (2007) The extended PLISSIT model for addressing the sexual wellbeing of individuals with an acquired disability or chronic illness. Sex Disabil 25(3): 135–9
The doctor said MND wouldn't affect my sexuality " … but it has
  • B Taylor
Taylor B (2010) " The doctor said MND wouldn't affect my sexuality " … but it has. Oral presentation at 21st International Symposium on ALS/MND, Florida. 12th December.