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Pain, disability and symphysis pubis dysfunction:

30 May, 2008

Pain, disability and symphysis pubis dysfunction:

Background. Pregnancy is not usually associated with disability or difficulty with activities of daily living, however when a woman develops symphysis pubis dysfunction (SPD), she may become disabled. During a research project - the Gap study - into women’s experiences of SPD, issues of SPD-related disability became evident.

Evidence Based Midwifery: March 2008

  

Margaret A Crichton1 MSc, MTD, BA, RM, RN. Vanda K Wellock2 MSc, BSc, RM, RN. 1 Lecturer in midwifery and nursing, School of Nursing, Midwifery and Social Work, University of Manchester, Oxford Road, Manchester M13 9PL England. Email: margaret.a.crichton@manchester.ac.uk

2 Family nurse supervisor, Kath locke Community Health and Resource Centre, 123 Moss Lane East, Manchester M15 5DD England. Email: vanda.wellock@manchester.nhs.uk

 

The authors would like to thank all the women who participated in this study, for their time, their patience, but most of all, their emotion and willingness to share with them. They would also like to thank Dr Margaret Chesney for her unfailing help in writing the paper and to Viv Kearns for all her help and support.   

 

Abstract  

Background: Pregnancy is not usually associated with disability or difficulty with activities ion (SPD), she may become disabled. During a research project – the Gap study – into women’s experiences of SPD, issues of SPD-related disability became evident.
Aim. To explore the disabling effects of SPD on the lives of pregnant and newly-delivered women and their families.
Method. A qualitative phenomenological approach using semi-structured interviews was conducted in a large maternity hospital in the north-west of England.

A total of 28 women were interviewed during pregnancy, and at six weeks’ post-delivery. Results. Results revealed that SPD had a profound effect on the women’s lives, leaving them feeling disabled and compromised in their personal, maternal, sexual and housekeeping roles. This affected their ability to function in what they considered to be the normal roles of family life and caused feelings of frustration, loss of control and helplessness. Conclusions. Healthcare professionals need to listen to women and give them the psychological support they require. This will have implications for practice in terms of education, training and postgraduate studies. Women need to feel more valued, when they complain about this type of pain.  

 

Introduction

The word ‘disability’ is not usually associated with aspects of normal pregnancy. The Disability Discrimination Act (1995) defines a disabled person as one having a mental or physical impairment, which has an adverse effect on the ability of a person to carry out normal day-to-day activities. As healthcare practitioners, we appear to be unaware of how seriously disabling and painful symphysis pubis dysfunction (SPD) during pregnancy and labour can be. SPD may be defined as an abnormal stretching of the pubic joint during pregnancy (Wellock, 2002). This study was undertaken between 2003 and 2005.

 

Since that time, the terminology has changed and is now known as pelvic girdle pain (PGP) related to pregnancy (Association of Chartered Physiotherapists in Women’s Health, 2007). Throughout this paper, the term SPD will be used, but the authors acknowledge the new terminology. Generally pain is the most frequently described symptom of SPD expressed by women to healthcare professionals. Depending on location, duration and intensity, this pain can have disabling effects on people’s lives and their ability to perform the activities of daily living (Hansen et al, 1999; Katz, 2002; Leadbetter et al, 2004). There have been many studies that have researched the effects of pain on activities of living. For example, Katz (2002) and Breivik (2005) have determined that it is the quality of life measurements that are most useful in assessing the ability of a person in pain to perform basic human activities.

 

Defining pain has proved difficult for researchers, especially the debates of what constitutes acute versus chronic pain. Traditionally, pain was only considered chronic if it persisted for six months or more (Wenof and Paul Perry, 1999). Singh et al (2004) recommended that pain should be classified as chronic if it persists for more than three months and the European Federation of the International Association for the Study of Pain (IASP) endorses this view and regards pain lasting between three and six months as chronic (Niv, 2007). Pain has been defined as ‘an unpleasant sensory oremotional experience associated with actual or potential tissue damage or described in terms of such damage’ (International Association for the Study of Pain, 1994: 209).

 

Inadequately treated pain can have profound effects on patients, leading to increased morbidity and reduced mobility (Niv, 2007), reduced physical activity (van den Berg-Emons et al, 2007) or substantial reduction in activities of living (Smith et al, 2007a). This scenario defies the image of pregnancy and motherhood as a positive, happy, joyous and natural experience for many women (Lewis, 1997; Fullerton, 1997; Choi and Henshaw, 2005) and one that becomes the ultimate fulfilment of a woman’s role (Gregg, 1995; Green et al, 1998; Wilkins, 2006). Childbearing women who suffer from pain that persists for 12 weeks or more can become distressed and disabled, and this can have profound effects on family life.

 

Literature review

A literature search explored the electronic databases such as MIDIRS, CINAHL, MEDLINE and the Cochrane Library using terms such as ‘activities of daily living’, ‘pelvic pain’, ‘low back pain’, and ‘pelvic pain/ pregnancy’. The goal was to identify literature about pain-causing disability in pregnancy. ‘Activities of living’ and ‘pelvic pain’ combined revealed no matches. ‘Activities’ and ‘pelvic pain’ revealed only one article and ‘activities’ linked with ‘low back pain’ resulted in 19. Although these articles did not relate to pregnancy, they highlighted how the activities of living are affected by pain, causing disability and fear-avoidance behaviour (Buer and Linton, 2002; Goubert et al, 2004; Roelofs et al, 2004). In the main, the studies related to mixed genders and older age groups – they demonstrated that activities of living took much longer than they had previously, or were abandoned because of pain. Activities of living were rarely mentioned. Instead, aspects of fear of movement were highlighted as problems (Verbunt et al, 2005), lifting and cycling tasks (Roelofs et al, 2004), sleep disturbance, difficulty in conducting household tasks and recreational activities (Roberto and Reynolds, 2002).

 

Studies used a variety of different measuring techniques and the approach was mainly quantitative. When topics such as ‘back pain in pregnancy’, ‘pelvic pain in pregnancy’, pelvic girdle pain’, ‘chronic pelvic pain’ and ‘symphysis pubis dysfunction’ were combined, a great deal of information was found that related to pregnancy, but was not combined with disability. A literature review on low back pain and back pain in pregnancy revealed a systematic review undertaken by Pennick and Young (2007). This review highlighted that symptoms of low back and pelvic pain are common in pregnancy and can have a detrimental effect on aspects of daily living. Low back pain clearly has an impact upon the person’s ability to carry objects, clean, sit comfortably, walk and it profoundly affects sleep. Eight studies, none of which came from the UK, included 1305 women. Pennick and Young (2007) state that many of the studies are poorly written, that researcher bias was evident and that the results should be viewed with caution. It was clear that more rigorous research was required into the stress these conditions cause to pregnant women.

 

Terminology such as ‘pelvic girdle pain’ or ‘pregnancy related to pelvic girdle pain’ (PPGP) are used and as the symphysis pubis is part of the pelvic girdle, one may presume that distressing symptoms may be linked. An historical review by Bastiaanssen et al (2005) into pregnancy-related back pain and pelvic girdle pain revealed that there is increased interest in the topic because of the large number of women diagnosed with pelvic pathologies. Interest in pelvic pain in pregnancy has increased significantly in Scandinavia and much of the current research emanates from there. The economic costs in terms of time lost at work in Scandinavia and the effects on society were profound (Bjorkland, 2000; Juhl et al, 2005; Prkachin et al, 2007). Researchers had previously commented that terminology was confusing (Wellock, 2002; Leadbetter et al, 2004). Bastiaanssen (2005: 10) felt it would be prudent to have an ‘all-embracing definition of this new syndrome’. The work done by Albert et al (2001, 2002) attempted to clarify terminology and divided pelvic pain into four syndromes, explaining what was meant in each group.

 

The four groups are: 

  •  Pelvic girdle syndrome, pain in all three joints     

  • Symphysiolysis, pain in symphysis pubis  

  • One-sided sacroiliac syndrome

  •  Double-sided sacroiliac syndrome.

 

However, the new guidelines from the Association of Chartered Physiotherapists in Women’s Health (ACPWH) (2007) have suggested that the term ‘pelvic girdle pain’ be used, in order to lessen the confusion. A quantitative study by Wang et al (2004) reported that 69% of pregnant women experienced low back pain that affected their daily household, sleep and leisure activities. In a qualitative study, Smith et al (2007b) stated that pain was a public health issue and a cause of increased morbidity indicating poorer health and greater disability.

 

They reported back pain affected self-image and the resultant disability was compounded by feeling vulnerable about how others viewed them in relation to their incapacity. Many of the studies on low back pain in pregnancy and non-pregnancy conclude that pain causes distress and disability (Leadbetter et al, 2006; Smith et al, 2007b) but few explore what that disability is or its effects on a pregnant woman and her family. In a review of the treatment for SPD, Jain et al (2006) refer to it as causing significant difficulty with women caring for their families. It can also lead to ‘social isolation’. The list of symptoms given by Jain et al (2006) are similar to those listed by Leadbetter et al (2004) with a gap in the literature regarding the effects of those symptomson women and their families. Robinson et al (2006) conducted a quantitative postal study in Norway on pelvic pain in pregnancy.

 

The purpose of the study was to ascertain the effects that the condition had on daily functioning. Symphysis pubis pain was mentioned and placed clearly within the realms of pelvic girdle pain in pregnancy. This study described pain leading to women suffering sleep disturbance, severe functional disability and incontinence. The study concluded that more knowledge of the consequences of disability was required. A review conducted in the UK by Leadbetter et al (2004) states that the effects of the condition are related to activities of daily living. A familiar pattern of symptoms was reported: night pain, broken sleep and pain on movement. Although the paper views many aspects of the condition and cites many articles to support the facts, the detailed consequences are limited. A scoring system has been devised in order to monitor women’s progress and assess any interventions (Leadbetter et al, 2006). In general, there is a dearth of literature regarding the effects of pain from SPD on women’s ability to fulfil family roles. Consequently, the aim of this paper is to explore how the pain and disabling effects of SPD affect the relationships of individual women and their families during pregnancy and childbirth.

 

Method

A qualitative approach was employed utilising the phenomenological method. This particular philosophical tradition was chosen, in order to capture the ‘lived in’ or ‘essence’ of the experience for each woman (Heidegger, 1974). Heidegger (1962) was considered appropriate, because of the doubts about the ability to ‘bracket’. Bracketing – meaning to hold all presuppositions of the concept under review in abeyance in order to reach the true essence of the phenomena – is a Husserlian concept (Beech, 1999). The researchers felt that because they were midwives, it would be impossible to bracket knowledge from previous experiences of normal midwifery as this knowledge would bring additionality to the data. Rather than creating bias, it could be argued that the absence of bracketing would enhance the researchers’ data. This in turn would help other professionals to understand what it feels like ‘to be in the world’ of a woman suffering SPD. This concept concurs with other healthcare-related research such as that of Taylor (1995), who found that preconceptions about nursing practice would add to, not detract, from the body of knowledge.

 

The directly transcribed papers were read and confirmed by the women in the study as the transcripts were returned to them for proofing pre- and postanalysis. The model chosen for analysis was Colaizzi (1978) as this had clear steps for the researchers to follow. The researchers have tried to remain faithful to the concepts of phenomenology. The work was a direct transcribed version of what the women actually said rather than an interpretation of what they said or may have meant. An in-depth explanation of methodology has been described in a previous paper on this study (the Gap study) (Wellock and Crichton, 2007a).

 

Ethical considerations

Ethical approval was obtained from the local research ethics committee, the hospital and university ethics committees prior to conducting this study.

 

Data collection

Data were collected using audio-taped in-depth interviews and field notes. As there had not been any qualitative research that assessed how women felt having SPD, the following opening comment was used as a means to explore the woman’s experience: ‘Tell me about your experiences of living with SPD and how it affects your life.’ The interviews were proposed to take place at three designated points: initial diagnosis, 36 weeks’ gestation and six weeks’ post-delivery. The interviews were carried out between March 2003 and February 2005. The time of diagnosis was variable, ranging from 18 to 38 weeks’ gestation. A total of 28 women with SPD were recruited to the study with no refusals or withdrawals. Not all the interviews took place at the proposed intervals as some were only diagnosed late in pregnancy, some were admitted to hospital with other problems and some had moved out of the area.

 

Sample

The sample was purposive. Women with any signs of SPD were referred by midwives or doctors in antenatal clinics to the physiotherapy department. In each case, a physiotherapist confirmed the diagnosis using the signs and symptoms of SPD, which vary with the severity of the condition. Many of the women complained of a burning or stabbing sensation over the symphysis pubis, which radiated down into the inner thigh. Pubic pain increased on normal activity such as walking, parting or lifting the legs. This caused difficulty in turning over in bed, which resulted in sleep deprivation. Problems were also incurred getting into and out of a bath or having a shower. Other symptoms can be found in Wellock (2002). The women were asked to participate in the research and those who agreed were given an information sheet, which outlined the study. This was followed up by a telephone call two days later from one of the researchers in order to answer any outstanding questions or queries.

 

Informed written and verbal consent was obtained prior to the interview. Women were interviewed in a place of their choosing, usually their home, as this was more convenient for them in view of the mobility issues. Three women were interviewed on three occasions; a total of 17 were interviewed twice, and eight, once. Eight women were only seen once, because they were diagnosed late in pregnancy, moved away fromthe area, or the study time had expired. Only three of the women were available for all three interviews as many were in hospital when the 36th week interview was due. The length of the interviews ranged between 30 and 90 minutes, with an average time of 60 minutes per woman. Numerical codes were assigned to each participant in order to maintain anonymity. Each woman was assured confidentiality. The study sample consisted of pregnant women aged from 18 to 42 years, both primigravida and multigravida. The cultural mix of the women was varied as was the socio-economic status, which was in keeping with the geographical area.

 

Data analysis

All interview tapes were transcribed verbatim. Analysis was informed by the phenomenological tradition, using Colaizzi’s (1978) ‘seven steps’ approach. Emergent themes and sub-themes were identified by the researchers, explored and fully discussed in order to make it informative and iterative. Data were stored on cassettes then transcribed and saved, in keeping with the new regulations on research governance that data must be kept for ten to 15 years.

 

Findings

The main theme in this paper was to explore the disabling effects of SPD and to assess the effect this had on the women’s roles. The results produced a significant amount of descriptive information relating to how difficult it was for women to perform daily tasks of living. This impacted on their lives and affected them as women, mothers, lovers and in the housekeeping role. In the mundane or important aspects of life, women saw themselves as disabled: ‘At the Palace (Queen’s birthday)… I thought… I can’t say I’m disabled and so couldn’t answer for disabling seating… although I’ve got a disability… that’s another thing… telling them about badges and to get the doctor on your side to get a disabled badge…’ (VM13). ‘And the only way I can do the Trafford Centre is if we park in the disabled… er… they’ve got Shop Mobility there…’ (VM10). Several women chose to use metaphors in an attempt to describe their own movements. This concept was also highlighted in another study in Finland (Bondas and Eriksson, 2001) in which women were found to use animal metaphors to describe how they felt about their bodies. In the Gap study, the women described ‘crablike’ movements, the sideways action they used to help them climb the stairs.

 

Some of their partners spoke of their waddling gait, like that of a duck: ‘If I tried to walk upstairs normally, straight up or something, I just couldn’t do it because the pain would stop me doing it… I go up the stairs sideways… sort of go up crab-like…’ (VM38). ‘I couldn’t go up facing the stairs. It was a crab motion or on my bottom… “you are waddling …you’re like a duck”, my husband said… he calls it my duck walk… and the waddling ruins your shoes…’ (VM13). Some of the women smiled at their recollections, particularly if their husband or partner had described the movement with humour. This use of humour may have been in an effort to explain or mask the embarrassment they might have felt at being compared to a duck. Ragan (1990) and Bondas and Eriksson (2001) found that humour was often used to alleviate anxiety and/or embarrassment by both patients and staff.

 

Effects on personal role  

The effect that SPD had on the personal lives of women in the study was grounded in cleanliness and personal hygiene, getting in and out of bed, sleeping and giving up work due to pain on mobility. Without exception, the women in the study felt that they lost their identity as a mother, daughter, wife or partner and this affected their personal image. Several of the women (n=7) were unable to get to the toilet in time, many referred to ‘little accidents’ in the home and in bed during the night. Some were embarrassed, giving the information in hushed tones, some cried, while others laughed about it.

 

The women were ingenious at finding alternative ways to get to the bathroom and several women used strategically placed utensils, such as buckets as commodes: ‘I was cooking you know and when I feel I want to go to the toilet I feel it suddenly…. I couldn’t reach upstairs and I was very much in pain…’(sobs) (VM3). ‘Sometimes in the bedroom, I have to roll on to the floor… and you get up to go to the bathroom and it’s very difficult… one time I had to crawl to the bathroom…’ (VM18). (This woman reported that she wet herself before she reached the bathroom and became very upset). Bathing also caused problems as it necessitated the women lifting their legs to get in and out of the bath.

 

For some women, this was virtually impossible since moving their legs affected the pelvis and caused a great deal of pain: ‘Oh yes, I got in the bath last week and I couldn’t get out of it and I was on my own… I was crying…. God, it took me ages…’ (VM18). As a consequence women opted to use showers whenever possible and despite all the hardships they experienced, some were still able to view their situation with humour: ‘When I’m like, getting washed in the shower, ‘cos you’ve got to stand up and you’re like bending down, that’s just a killer, so in the end I just have to sit on the floor in the shower… just don’t drop the soap… (laughs)’ (VM34). When pain does not seem to improve over time and starts to feel continuous, it affects the way women feel about themselves. Studies into the effects of chronic pelvic pain have reported that pain causes anxiety, depression and a sense of loss of control (Nicholson, 1999; Livneh et al, 2004). In relation to childbirth pain, beingin control is very important and a cause for concern to many pregnant women as they proceed to the delivery date (Lavender et al, 1999). Consequently the concept of pain and control is compounded for women with SPD. It becomes very worrying for them and often causes frustration. Women may have concerns about labour pain, but when they already have a degree of pain which does not abate, women with SPD are often concerned about how they would cope with both kinds of pain simultaneously: ‘I worried about the labour… the pain of labour was easy, during the contractions I could easily cope, but the pain from SPD was terrible… nothing seemed to stop that pain’ (VM41). Control over their own lives was also an issue.

 

The concept of being independent was considered important: ‘I seem to have lost control over my life…’ VM3. ‘You can’t take steps to make it better… I just feel like shoving the crutches up people’s backsides… it’s all right saying “do this and do that”, but you just can’t…’ (VM44). ‘I’ve only got under-bumper knickers and the physio’s suggested big knickers… so… I thought I am buying my own knickers, I am not having my husband go in and buy them. I walked to the aisle and people were jostling, knocking me… I realised… I could not make it… so my husband gave me a pound so I could go have a cup of tea while he went shopping… erm… I realised I couldn’t carry a tray and my crutches… no-one helped me… I burst into tears and didn’t stop all weekend. I just felt completely helpless’ (VM38). The act of going to bed was difficult in many ways. There was difficulty walking upstairs, it was then hard to find a comfortable position in bed and to try and get some sleep. Nearly all the women commented that they found difficulty turning over in bed, which not only caused sleep deprivation but also terrible pain: ‘As soon as I go to bed it kicks in… you lie down and try to turn over… you feel like you’re a hundred, it’s ridiculous… it’s just a big effort to turn over…’ (VM29). Some women found that getting up in the night to go to the toilet was problematic. This led to some feeling disabled and powerless: ‘Just feel like an old woman… all the way through it… not being able to walk and struggling to get out of bed… literally feeling crippled when I was going to the toilet in the night’ (VM50). Such effects appeared to make the women feel ‘stranded’. They worried about what might happen to them if they found themselves in a difficult position and unable to obtain support because they were on their own: ‘I’ve been locked a few times (pelvis)… I wake up in the morning and I can’t get up… I just lie there (pause)… I’ve had to ring my mum twice to come and get me up and my little boy had been crying for me in his bedroom… (becomes very upset)... and I’ve had a few accidents waiting for her to come round. If it wasn’t for my mum, I could be left there for a long time. That worries me… I need to take the phone to bed with me’ (VM17).

 

The women who continued to work found that they needed to make adjustments. In the main, the women found their employers and fellow workers to be supportive, assisting them by finding them different chairs, desks and changing workloads. Unfortunately nothing seemed to help very much: ‘I can’t bend down, I can’t sort of kneel and do things at work. I had to change my work chair because it was making me worse... I kneel a lot... I went to a conference in Cardiff, got delayed for three hours and had to stay in a hotel.... em… about 5 or 6pm... I couldn’t get out of bed… I had to call my husband to collect me…’ (VM9). There were also financial implications for those women who had to give up work because they could not cope physically with the disability and pain caused by SPD. Hayghe (1993) reported that in society today, a wife’s earnings make up a sizeable portion of the family income. Loss of income caused some of the women in the Gap study to become very emotional and tearful. Some felt that their ability to help support the family had been compromised by the condition of SPD and this affected how they felt about themselves: ‘I need to go on benefit because I can’t work any more… I need to pay… for my mortgage… I’d paid for my exam and if I don’t attend the exam I will lose it... it is not a small amount… (very upset)… you know… I was enjoying my job, I wanted to gain more experience before I take my exams…’ (VM3).

 

Effects on maternal role  

The changes that occurred in this role produced tears, painful recollections and sadness in the women. It caused some to have doubts about their ability to be a good mother with this affecting them considerably. The maternal role in the home included taking care of children, which involved taking them to nursery, school, on outings and playing with them in and outside the home: ‘Unless you’ve got the support of others… it means there’s you all day with a baby that you feel you can’t look after adequately…’ (VM13). Many women reported that they felt that they had lost this role in many ways. Taking the children to school, for example in the mornings was an ordeal because walking and/or driving was difficult and in some cases impossible: ‘Picking up the children… couldn’t go to school to pick up the children, so I had to get taxis and everything… so it means I won’t be able to do anything… with the children…’ (VM16). Those women who were at home with young children all day expressed anxiety about their inability to entertain them. As a result, many of the interviews wereaccompanied by the sound of children’s videos and television programmes playing in the background.

 

Some women were anxious about their ability to join in with family activities as they were no longer able to walk with the children, play with them or even take the dog for a walk. SPD therefore impacted on the whole family, including the dog: ‘I can no longer even walk the dogs round the fields… I get my kids to go up and down the stairs a lot more for me, I’ve not gone swimming since I started with this and that’s something else we try to do regularly as a family…’ (VM14). Some of the most emotional interviews involved the hygiene training of children and how powerless the women felt when they were unable to meet the needs of their children and had no one at home to help: ‘When she goes to the toilet (upstairs), she accepts that… she would like a wash and she can’t because she needs me to help her (woman sobs at this)… she was so good with toilet training and now it’s all gone… (sobs again)… because I can only go up in an emergency because it is so painful, I go up and down on my bottom…’ (VM3). One woman admitted that she spent a week in the same clothes because she could not use the stairs and had no help that week. In this instance, mother and child slept on the settee.

 

Another woman explained that she could only go up and down the stairs shuffling on her bottom. The degree of emotion expressed by the women during the interviews was quite alarming, with many expressing their feelings to the researchers with clarity and ease. Some even expressed concern about how they would feel towards the baby: ‘I thought I don’t want this baby… and I was frightened of looking at him and saying and thinking… I don’t love you, you have caused me all this pain… it’s not him... but it was horrible... no more children’ (VM12). All the women complained that they could not lift their babies for several weeks after delivery. The movement of bending, lifting and carrying was too painful: ‘It’s just like… getting on the floor to bath her, I couldn’t change her bottom on the floor… I have to do her on my knee and sat on a chair and that…’ (VM40). Women with other children had a great deal of difficulty coming to terms with their loss of ability to fulfil the maternal role. They felt that this caused confusion for the children and a break in the bonding they had nurtured as a mother: ‘With him being little, he wants me to do things, well… I can’t sit down because it’s uncomfortable… and he wonders why mum is not doing it and dad is…’ (VM30).

 

Effects on sexual relationship role  

As pregnancy advances, sexual activity may well reduce for a number of reasons (Walton, 1994). The couple may be fearful of harming the fetus, women may have morning sickness or other minor disorders of pregnancy. Sexual desire varies considerably, however there is no blueprint for couples, as everyone is different (Walton, 1994). A study undertaken by von Sydow (1999) reviewed existing studies on sexuality during childbirth and concluded that two areas of research should be integrated, the medical- obstetrical and psychological branches. She found that the issue of sexuality is often explored superficially. In pregnant women who have SPD, the pain compounds the situation and means that the effects on husbands or partners could be enormous. In the Gap study, women reported that sexual activities did tend to be curtailed, often because of the movement that is required and the pain this caused: ‘And it affects your relationships with your partner… I’m lucky I’ve got such a wonderful husband… it’s all very well saying don’t abduct your legs, but when you make love you can’t help it… you find there are very few positions where he can get anywhere near you… (laughs)… and also now because I’m in so much pain… even after we make love, the next day I’m really in a lot of pain…’ (VM19). The following woman reported that both herself and her partner suffered from sleep deprivation, because she required help to turn over in bed and needed to wake him. The disruption caused was found to be very upsetting: ‘Finally sorted out a bed in the spare room so I don’t have to sleep with my husband... I need all the room... because every time I turn over, it’s a big ordeal… I wake him up and then if I did get comfortable and then he moved and made me move… we would have a big row and it was hard to get to sleep’ (VM11). Following birth, many women express fear of another pregnancy when they resume sexual activity post-delivery.

 

The time this recommences is variable. It is estimated on average to be at six to eight weeks in Europe and the US (von Sydow, 1999; Ahlborg et al, 2005). However, many women in the Gap study expressed a great fear of resuming sexual activity. As a result of the pain suffered with SPD, they felt that they needed an extended rest and were adamant that for them another pregnancy would not occur: ‘I won’t be doing this again… that’s for sure… I couldn’t go through it again… I really couldn’t… I’ll be adopting in future…’ (VM27).

 

Effects on housekeeping role  

Of major concern to the women was their inability to keep their homes clean and to cook for their families. In spite of being pregnant, they felt they should still be able to undertake these household tasks. The division of labour within the home has been well debated throughout the years, yet the women consistently accepted that household chores were their domain (Orbuch and Zimmer, 2001; Zipp et al, 2004). The latter study found that we learn expectations of behaviour as order to maintain the home and family life.we grow and mature. We then ‘perform’ in accordance with our gender. Women perform in a domestic role, particularly when they have traditional beliefs. US studies have demonstrated that as much as 70% of household work was undertaken by women (Walker, 1999; Milkie et al, 2002; Kroska, 2004). Households do vary however and the division of labour may well depend on which type of belief pattern prevails.

 

In the Gap study, the women reported that they were responsible for undertaking the majority of household tasks, but because of the pain this was often impossible: ‘It stopped me shopping, lifting, just everything really that I took for granted, that I could do beforehand’ (VM6). Activities of living – tasks such as cleaning, cooking and ironing – involved some kind of movement, which brought about pain. Resting did not help, as when they did have to move, mobilising became even more difficult and more painful. The physical act of movement therefore curtailed the activity and every task took much longer. The women also suffered afterwards from undertaking the tasks. This was also demonstrated in a study by Dudgeon et al (2005), who found that mobility exacerbates the pain, which in turn has an effect on personal and everyday activities of living. An often-mentioned activity, which caused a change in behaviour was vacuuming. Nearly all the women in the Gap study mentioned that pushing and pulling the vacuum cleaner was very difficult and painful. As a consequence, the task of vacuuming was neglected, or it had to wait until someone else could do it for her: ‘Kneeling down… em… like hoovering as well. I didn’t realise that you’re actually pushing from your pelvis and I didn’t realise it until I started with the pain… it’s something you don’t think of’ (VM20). ‘I can’t bend down, I can’t do the vacuuming… which is cool… because my husband gets to do it… anything heavy duty, I don’t dare attempt’ (VM45). Driving was a problem, since getting in and out of the car required several movements, i.e. bending to get into the car, swinging the legs and using the pedals.

 

Also mothers had difficulties in getting children into car seats and dealing with prams and pushchairs. Many of the women reported that they could no longer walk to the shops. Shopping itself caused a great deal of pain and discomfort for most of the women as the act of pushing a trolley was much like using a vacuum cleaner. In the big supermarkets, these women faced the added difficulty of walking long distances, further compounding their distress: ‘Couldn’t walk a mile in a supermarket… I have to stop halfway down the aisle… read the labels on dog and cat food… you name it… bleach... I can tell you what’s what… surprised that we have ammonia in water but there you go… I just bend over the trolley… it kind of relieves the area somehow’ (VM18). Some of the women in the Gap study became very angry and upset over their inability to maintain their role. The change SPD brought about on their lives made some feel useless: ‘I am not able to do something as simple as a little shopping… it’s not fair… if I can’t look after myself, how will I be able to look after my son and a new baby… I am a burden to my husband and family… my life gives me nothing except pain… I feel useless… what is the point?’ (VM38). This participant did become very anxious about her incapacity during pregnancy. In the postnatal interview, she admitted to having suicidal thoughts. She also took large amounts of strong analgesia to relieve the pain and this caused her to worry about the effect this would have on the baby.

 

Discussion

This study, like many others (Katz, 2002; Leadbetter, 2004) has found that pain in itself is debilitating. SPD causes disability, creates anxiety and often leaves women feeling stranded, helpless, useless, powerless and out of control. Many of the women suffered almost total incapacity in their activities of daily living and felt aggrieved at having to rely on others to help them cope with household chores and their families. During the interviews, the women were eager to discuss their feelings, sometimes becoming very emotional, because they felt that no one else was listening to them when trying to explain their pain, a point highlighted in a recent article (Wellock and Crichton, 2007b). As a recent publication (Take a Break, 2007) demonstrates, women with the condition want their carers to listen to their pain and support them physically and emotionally. However every woman in the study reported that they had received support from husbands, partners, family and friends throughout their ordeal. The strength of relationships witnessed by the researchers was quite remarkable. With increasing debilitating pain and an inability to function normally, many of the women displayed anxiety, fear and disappointment. From the evidence presented, there can be little doubt that SPD impacts heavily on the role of pregnant and newly-delivered women, in their personal, maternal, sexual and household roles. This study has been able to identify directly from the women’s point of view, how it makes them feel about themselves, their partners, family and friends.

 

The women told their stories unaided, without prompts and with great emotion. Many said they wanted to tell the researchers everything and the researchers felt that the women displayed great strength and determination throughout their experiences. They persevered, many from early pregnancy, to cope with increasing disability and pain. Many of the women showed tremendous innovation and forward planning in order to continue daily activities while minimising their pain, which concurs with the work of Buer and Linton (2002) and others, although the participants in those studies were not pregnant. They found ways of coping with the pain, inorder to maintain the home and family life. The findings of this study suggest that it is difficult for women to have the ‘normal, fulfilling, happy and joyous feelings’ (Lewis, 1997; Fullerton, 1997; Choi and Henshaw, 2005) one might expect from a normal pregnancy and birth, when simple tasks such as shopping, child care and cleaning could not be achieved. One of the most difficult tasks for women was their inability adequately to toilet themselves and their children. Women suffered accidents with their own toileting, causing them personal embarrassment and they became distressed when they were unable to attend to the needs of their children, whose progress in toilet and hygiene training was lost.

 

Conclusion

This study has highlighted that there is a need for further research into SPD, especially within the areas of causation and management. Most importantly, healthcare professionals need to understand the psychological implications for women with this traumatising and disabling condition. This will have great implications for practice in terms of staff training, producing guidelines, devising scoring scales such as that of Leadbetter (2006) and producing advice sheets for pregnant women such as the Pregnancy- related pelvic girdle pain: guidance for mothers-tobe and new mothers (Association of Chartered Physiotherapists in Women’s Health, 2007).

 

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