P A I N M A N A G E M EN T

Chronic pain and the family: the experience of the partners of people living with chronic pain
Caryn West, Kim Usher, Kim Foster and Lee Stewart

Aims and objectives. The purpose of this study was to explore the impact of chronic pain on the partner and family of a person with chronic pain. Background. Chronic pain impacts not only on the individual but also their partner and/or other family members. Families of people with chronic pain have reported feeling powerless, alienated, emotionally distressed, and isolated. These impacts have affected their relationship with the person with chronic pain. Design. An interpretive qualitative design using in-depth interviews and thematic analysis was undertaken. Methods. Purposive sampling and in-depth interviewing were undertaken to develop a rich description of the experience. Results. Findings indicate the impact of chronic pain on the family is extensive, resulting in physical, social, and emotional changes. Four themes were revealed: (1) Family loss, (2) Life changes, (3) Emotional impact of pain, and (4) Future plans. Conclusion. This study reinforces and expands current knowledge regarding the impact of chronic pain on partners and families. Understanding this phenomenon opens opportunities for nurses and other health workers to develop and implement strategies to better support partners/families in the future. Relevance to clinical practice. Nurses can help reduce the negative impact of pain by including families in assessment, education, referral and treatment processes, and by offering support and education to partners/families. Key words: chronic pain, family, pain, partners, qualitative
Accepted for publication: 8 April 2012

Introduction
Chronic or persistent pain is a relatively common condition in Australia with a current estimated 32 million Australians, including 14 million males and 17 million females, experiencing the condition and a projection that the gure will rise as high as 5 million by 2050 (Blyth et al. 2007). The current gures represent approximately 17% of males and 20% of females in the Australian population. Similar rates are evident

in other countries. A large survey in Europe, for example, found chronic pain was reported by 1230% of people interviewed (Breivik et al. 2006). Conditions such as back pain and arthritis form the largest groups of causes of chronic pain (Australian Bureau of Statistics 2006, Arthritis Australia 2011). In 2007, costs associated with chronic pain were estimated at around AUD$343 million of which $7 million was health care related (Blyth et al. 2007). The effects of chronic pain,

Authors: Caryn West, RN, GDip Res Methods, GCert Ed, Lecturer and PhD Candidate, School of Nursing, Midwifery & Nutrition, James Cook University, Cairns, Qld; Kim Usher, RN, BA, MNSt, DipNEd, DipHSc, PhD, FRCNA, FACMHN, Professor and Associate Dean of Graduate Research Studies Cairns, School of Nursing, Midwifery & Nutrition, James Cook University, Cairns, Qld; Kim Foster, RN, DipAppSc, BN, MA, PhD, MRCNA, FACMHN, Associate Professor, Mental Health Nursing, Sydney

Nursing School, University of Sydney, Sydney, NSW; Lee Stewart, RN, RM, DipTch, BHlthSc, MDispute Resolution, PhD, MRCNA, Senior Lecturer, School of Nursing, Midwifery & Nutrition, James Cook University, Townsville, Qld, Australia Correspondence: Caryn West, Lecturer and PhD Candidate, School of Nursing, Midwifery & Nutrition, James Cook University, PO Box 6811, Cairns, Qld 4870, Australia. Telephone: +61 07 4042 1391. E-mail: caryn.west@jcu.edu.au

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however, cannot be measured in nancial terms alone. Living with chronic pain is challenging for individuals as it impacts on every aspect of their life and interferes with the ability to undertake usual household chores, drive and participate in paid employment (Kress & Kraft 2005). Chronic pain also results in emotional distress and often leads to depression, mental exhaustion, anxiety, low self-esteem, fatigue and catastrophising (Linton 2000, Breivik et al. 2006). However, chronic pain not only exerts its impact on the affected individual; it extends to their partner and other family members (Evans & de Souza 2008). Undertaking a larger mixed methods study to investigate the link between chronic pain and family resilience led us to investigate the experience of chronic pain for the partners of people with chronic pain. Our ndings are of particular importance as most of the previous research has been conducted outside the Australasian region. Of interest in the literature are reports describing situations where chronic pain does not always have an adverse affect on families (Evans & de Souza 2008). Despite living with a chronic illness and experiencing a range of negative impacts, many individuals and their families survive the experience and even ourish (Becvar 2007). This fuelled our interest in why some families with a member with chronic pain managed to thrive while others did not. The purpose of the current study is to explore the impact of chronic pain on the partner and family of a person with chronic pain.

forced to take on a new role as nurse or minder. Further, when they do leave the house to attend to necessary outside matters, they report experiencing guilt for leaving the unwell member of their family alone (Ohman & Soderberg 2004). This is a common emotion in families living with chronic illness as guilt is also experienced by those living with illness because of the burden they perceive their illness has placed on their family (Davies & Allen 2007). Family members, especially partners, may experience signicant income loss related to loss of employment as they are required to remain at home to care for their partner (Goodwin 2000), which can lead to serious nancial situations. Families also grieve the loss of former roles taken by various family members, including the individual who is unwell, and express sadness or frustration with new roles forced upon them. For some families, the family system continues to change as the illness progresses, often requiring ongoing role negotiation (Blanchard et al. 2009). Ultimately however, a family members chronic illness represents a constantly shifting interplay between individuals and the family system (Grey et al. 2006).

Families/partners and chronic pain

Chronic pain, dened as pain experienced every day for at least three months in the preceding six months (Blyth et al. 2007), has characteristics similar to those of chronic illness and is often co-associated with chronic illness. While pain is considered an essential process that signals injury or illness, it loses its physiological effectiveness when it progresses to become a chronic condition. In chronic situations, pain becomes a toxic inuence rather than a means of raising alarm (Sturgeon & Zautra 2010). Chronic pain impacts on every aspect of life in similar ways to that of chronic illness (Kress & Kraft 2005) and leads to role change within the family (Blanchard et al. 2009). A survey of 4611 individuals with chronic pain, by Smith et al. (2001), found marked adverse links between chronic pain and employment, daily living activities and in all measurable dimensions of general health. As a result, chronic pain has a huge impact of all facets of lifestyle and standard of living (Silver 2004). Chronic pain also results in emotional distress and can lead to depression, mental exhaustion, anxiety, fatigue and catastrophising (Linton 2000). The impact of chronic pain on the person can be seen in shifts in responsibilities and duties around the home such as cooking, cleaning, mowing and shopping, which may now fall to children, extended family members or partners. As a result of role shifting, the well partner or other family members may invest considerably more

Background
Families and chronic illness
Although not synonymous, there are many similarities between chronic pain and chronic illness. Families and partners of people with chronic illnesses are reported to feel powerless, alienated, emotionally distressed and isolated. These emotions can affect their relationship with the individual living with a chronic illness (Strauss et al. 1984, Snelling 1990, Soderberg et al. 2003). Unfortunately, part ners also report losing their friends because of having a partner with a chronic illness. As a result, they not only mourn their former intimate relationship but have also felt they were without friends to talk to when times were challenging. Losing opportunities for social interaction with others outside the family has been described as a shrinking exterior world and symptomatic of lives delimited by sleep and work because of a family members illness (Donalek 2009). Partners especially, but also other family members including children, describe feeling as if they have been
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time on housekeeping and maintenance. This can result in less time for pleasure activities and personal time (Silver 2004). A study by Soderberg and Lundman (2001) of women with bromyalgia and its associated chronic pain reported signicant relationship changes with family and friends. Partner support and understanding changed, children experienced signicant role changes and decreased family input from the person with bromyalgia led to relationship problems. Individuals with chronic pain become more passive and regretful about their illness and are unable to participate in family life as they had before, which further impacts on their intimate relationships with spouses or partners (Soderberg & Lundman 2001). Previous research supports these ndings, with marital and sexual satisfaction reportedly lessening after the onset of the pain (Maruta et al. 1981, Flor et al. 1987). Further, a wide variation is reported in partners assessment of the level of pain and disability experienced by the person with pain (Cano et al. 2005), and the perceived level of support received by the couple and its impact on pain (Leonard et al. 2006). Disparities in pain assessment can lead to the person with pain feeling neglected if their partner underestimates their pain or result in overprotective behaviours from partners who over assess the persons pain levels.

saturation occurred or the same material was heard across a number of interviews (Polit & Beck 2006).

Interviews
Data were gathered through in-depth, semi-structured interviews. The interviews were of 4560 minutes duration and included questions relating to the impact of chronic pain on the family. Interviews were conducted by the rst author (CW). Partners were interviewed separately at a time and place convenient to them. Interviews were audio-taped with consent, transcribed verbatim and stored for analysis (West et al. 2011).

Ethical considerations
Ethical approval to conduct the study was received from the relevant university Human Research Ethics Committee (approval number H2821). An information sheet was provided to the participants and those who agreed to be interviewed were asked to sign a consent form. Participants were reminded that the interview could be stopped at any time and all participants were provided with the telephone number of a counsellor for follow-up support if needed. Pseudonyms were allocated to all transcripts to ensure anonymity (West et al. 2011).

The study
The purpose of this study was to explore the impact of chronic pain on the partner and family of a person with chronic pain.

Data analysis
Thematic analysis, using an interpretive, inductive approach, was undertaken. This type of analysis is appropriate for qualitative data analysis when little is known of a phenomenon as it involves open coding and the creation of abstract categories (Elo & Kyngas 2007). Abstractions are then grouped together into a categorical schema that explains the phenomena at hand (Rebar et al. 2011). Two of the researchers individually analysed the raw data and then worked together to reach a consensus on codes and categories included to assure credibility and trustworthiness of the process (Minichiello et al. 2004, OReilly et al. 2009).

Participants
Inclusion criteria were a partner of a person diagnosed with chronic pain that had been ongoing for at least 12 months duration, over the age of 18 years and able to communicate in English. Participants were initially recruited as part of larger mixed methods study conducted to measure and explore the impact of chronic pain on family resilience. Advertisements were placed in local newspaper and a media release was used to advertise the study. In the rst phase of the main mixed methods, study participants completed ve survey tools. These recorded general demographics and pain information and measured impact of pain on the family, resilience, perceived social support and wellness. Following this initial phase of data collection, purposive samples of partners of individuals with chronic pain were invited to participate in semi-structured interviews. Of a potential 36 family members in the study, nine partners were interviewed before data

Rigour and trustworthiness

Keeping a log of data collection and analysis decisions, combined with regular research team meetings during the analysis phase to discuss emergent categories, enhanced the rigour and trustworthiness of this study. Rigour was supported by the purposeful inclusion of participants who had experience with the phenomenon under investigation.
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Trustworthiness was further enhanced by continuing data collection until the same information was being heard.

Results
Participants (n = 9) were all partners of an individual diagnosed with chronic pain for a period of time ranging from four to 30 years. Participant ages ranged from 2960 years, and four of the nine were men. Analysis of the interviews revealed a number of aspects of how chronic pain impacts on partners/family members. These are organised into four themes as outlined in Table 1: (1) Family losses, (2) Life changes, (3) Emotional impact of pain, and (4) Future plans. It is important to note that these themes and their subthemes do not exist individually, but rather coexist and overlap to form the entirety of the phenomena, an important aspect of thematic analysis.

Participants also described how trying to minimise the nancial and other losses they experienced helped maintain an element of normalcy for the family. For example, even though there was often considerable nancial strain on the family, by allowing small rewards or luxuries, the impacts of the larger losses were easier to live with. Participants indicated that a luxury item could be as simple as buying a chocolate, after shave or seasonal fruits, which although not expensive were not always within their nancial means. Family members in particular were acutely aware of the importance of these small luxuries to the family:
if I had 20 bucks in my pocket, I wouldnt buy me something, Id buy something for Beth (person with pain), because I think they would really like that or that would make them smile (Debbi, p. 2627)

Losses experienced by the family

This theme highlights the many losses experienced by the family when a member has chronic pain. While pain is an individual experience, the effects of pain are far reaching into the family structure. Losses incorporates four sub-themes: (1) Financial, (2) Family, (3) Friendships, and (4) Social activities. The nancial implications of chronic pain for a family can range from minor nancial inconvenience to catastrophic life changing implications. In current societies, it is not uncommon for both adult members of the family to be employed and for families to rely on both wages to meet the needs of the family. One participant explains:
when we had our business and John wasnt able to work anymore, so I had to run the business and make sure he was looked after, and try to nd out what was wrong with him. Then having to close the business, sell the house, move away that was the worst time (Karen, p. 23)

The majority of participants noted the loss of family connections as one of the major losses owing to chronic pain. For most participants, family included extended family members such as parents, siblings, aunts and uncles. One family voiced that because of the impact of pain on their family unit, one of their own children had walked away and no longer considered themselves a part of the family or had any contact with family members:
generally, my experience in life is when people dont know how to deal with something, they go, family included. (Meg, p. 2829)

The loss of friendships was also mentioned by all participants. This loss was seen as being directly caused by the impact of their partners chronic pain, which resulted in limited social contact and family outings. It seemed the participants believed it was almost inevitable this social deprivation would continue while the pain persisted. Participants also commented on how they perceived close links existed between the loss of friendships and other aspects of concern including life changes, emotional impacts and concerns for the future. The following quotes exemplify how friendships were impacted by chronic pain:
as for friends, as soon as I closed the business everybody took a wide berth because it was all too hard, you know, what is it, whats wrong with him he looks okay. People didnt understand that he couldnt go out, he couldnt cope with people being in the house, so we sort of lost our circle of everything. (Karen, p. 5)

Table 1 The impact of chronic pain on the family Family loss Financial Family Friendships Social activities Emotional impacts Self-blame Anger Fear Life changes Relationships Role reversals Career/employment prospects

Future plans Expected outcomes of the condition Ability to survive the experience

Linked closely to loss of friendships was the loss of social interactions experienced by families where a member has chronic pain. Participants explained that friendships and social interactions were intrinsically linked. The inability to attend social events such as birthdays and dinners eventually led to decreased invitations to social activities. For family

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members, the impact and effect the pain had on their social interactions was quite insidious:
sometimes I will try to take him out, maybe for dinner or something, he is not really capable of doing even that, its sometimes frustrates me because this is my life too (Linda, p. 3)

return to work to support the family nancially, one participant described how she came to resent her partner because she did not want to leave the children:
The nancial thing, forced me back into work and I really wanted to be at home with the kids, so I was angry for that. (Louise, p. 30)

Life changes
Life changes include the changes that the family has had to make because of, or to accommodate, the person with pain. This theme has three subthemes: (1) Relationships, (2) Role reversal, and (3) Career/employment prospects. Participants described quite marked changes in the relationships they had now with their partners and signicant others compared with the relationship they had prior to the onset of the pain. These included changes to their emotional relationship and sexual relationship. They described love and commitment to their partner, but because of physical and emotional limitations caused by the pain, the relationship had taken on a different meaning to the one they shared prior to the pain:
it changed everything, the man that Id met and fallen in love with who was very active, very sporty, very gentle and compassionate and quiet and peaceful, was now a tormented soul who was in agony, who was frustrated beyond imagination, and hed gone from being this gentle soul to being very angry, bitter, frustrated man who was in pain twenty-four seven. (Meg, p. 4)

For many participants, they now undertook work only for the pay and not for the reasons previously, such as job satisfaction or professional career development. In some cases, partners who had not previously worked were forced into taking menial jobs just to help the family survive nancially:
Its life. You get up every day. I dont want to be here today, but you just get up and come because you have to come cause you gotta get paid, youve gotta pay the bills. (Debbie, p. 29)

Emotional impact of pain

The emotional impacts on the family were divided in to three subthemes: (1) Self-blame, (2) Anger, and (3) Fear. Participants all expressed the emotional impact of having a partner with chronic pain; however, these feelings were not purposefully directed at the person with the pain, but rather at the pain itself. Participants were very clear about the emotional aspects associated with living with a family member with chronic pain. Feelings of selshness and self-blame were expressed by the participants. Although they did not blame the person with pain per se, there were times that they wanted to blame the pain for the changes it had caused for their family. Participants divulged how they felt guilty when they became frustrated or overwhelmed and wanted to remove themselves or have a moments respite from the pain:
I was being selsh. I just wanted to sit down. I wanted to stop and I didnt want to have to talk about the pain or see the pain or hear the pain or, have it there at all. I wanted it to be gone. I wanted it to be somewhere else and not sitting on my lounge. (Debbie, p. 18)

Participants also highlighted self-protective measures they took within the relationship such as emotional distancing. One participant describes this as the nurse role not the lover or partner role:
I really didnt want to deal with it (the pain). But I did, and she said to me I dont want the nurse tonight. I want you. (Debbie, p. 18)

Participants described how they had to revise or change roles because of the person with chronic pain. The following describes how these changes impacted on the familys everyday functioning:
the washing still has to be done, beds need changing, day to day duties of the house and I still have to work . I mean its (the pain) is an inconvenience, but thats just the way it is, just because a member of the teams down, you have to work through it. (Thomas, p. 1314)

The participants were also aware how at times they were just overwhelmed by the symptoms experienced by the person with pain and their inability to contribute to the family:
Yeah I felt selsh for saying it but I did say to him on occasions that I was tired of having to try and prop him up and make him feel good enough to just do something small, say put a load of washing on or anything. (Louise, p. 28)

Participants also highlighted the impact the pain had on their ability to work and continue to care for their family. As one participant explains, it was a forced return to work because of nancial difculty, which in turn created other problems within the family unit. As a result of the need to

Participants also explained their anger in relation to the pain experienced by their family member. The anger was directed at the person with pain in many instances:

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Pain management .in six months we had gone from living, we were happy, everything was going well, to hating everything. I was angry at Cameron. I blamed him for just about everything. (Louise, p. 13)

Chronic pain and the family: the experience of the partners

Participants also voiced fear. This was of a personal, familial and future nature and included being frightened and having safety concerns for the welfare of the family member with pain, personal emotions regarding coping and family experiences related to changes in family functioning:
when this all rst started happening I used to react a lot differently cause Id be frightened and thinking oh, shit what are we gonna do (Debbie, p. 9).

Plans for the future

Although participants did not specically voice concerns for the future of their family there were two issues that emerged which addressed their future expectations: (1) Expected outcomes of illness, and (2) Ability to survive the experience. Participants seemed to view the future in two stages. In some cases, the initial onslaught or injury that had caused the pain was not expected and hence partners in particular felt shock, fear of the future and feelings of being overwhelmed by the situation. However, even though the situation had overwhelmed them, the participants still seemed to consider the future while coping with the event. As time progressed, the initial shock for partner changed to one of acceptance of reality where they started to reassess the situation and consider how they would move forward into the future:
I think weve learnt through the whole process as well that its small steps that make the biggest difference and its just lots and lots of small steps and not necessarily all in the same direction, but you know mostly in that eld of going forward thats what makes a difference. (Louise, p. 46)

Participants voiced many ways in which they believed they had survived the impact of chronic pain on their family unit. The experience seemed to include positive aspirations for the present and the future, family strength and commitment:
I learnt to deal with it on a day-type compartment, thinking well today is shit, but tomorrow will be a better day, its a new day, and I started every day as its a new day, whatever yesterday bought has gone,.todays another day. (Meg, p. 11)

Discussion
The ndings of this study reinforce previous evidence that pain impacts on all members of the family (Kemler & Furnee 2002, Harris et al. 2003, Kress & Kraft 2005,
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Sturgeon & Zautra 2010). Chronic pain often results in the loss of employment that has a potentially devastating impact on the family (Donalek 2009). The nancial losses described by the participants in this study were evident and the impact was in most cases long-lasting. Other losses revealed in the study related to the loss of family members, friends and contact with others in the outside world. Unfortunately, losing friends because of chronic illness is not uncommon (Donalek 2009). As a result, people with chronic pain and their partners often nd themselves without a friend to talk to when times are challenging. This has previously been described in the chronic illness literature as being like a shrinking exterior world where families nd their lives limited because of one family members illness (Donalek 2009 p. 335). A similar phenomenon was reported by the participants in this study. The loss of friends may occur because partners and family members are reluctant to leave the ill person at home to go out because if they do, they feel guilty (Ohman & Soderberg 2004). This is interesting as guilt is also experienced by the person with the illness (Davies & Allen 2007) because of their perception of the burden they place on their partner/family. Role reversal is well documented in families when a member has a chronic illness such as chronic pain (Soderberg & Lundman 2001, Silver 2004, Blanchard et al. 2009). In this study, partners reported experiencing significant role change as the person with chronic pain was no longer capable of undertaking their previous household roles. This is similar to previous studies that revealed how family members grieved the loss of former roles taken by various family members and expressed sadness or frustration with the new roles forced upon them. In some cases, the role change continues as the illness progresses, which may require ongoing role negotiation (Rolland 1994, Blanchard et al. 2009). Role change was a signicant factor for the partners in this study. The nding that intimate relationships are affected by chronic pain is also not new and has been reported in previous research (Strauss et al. 1984, Snelling 1990, Soderberg et al. 2003). Importantly, other work has reported the importance of a supportive and loving relationship to the creation of a positive environment for all family members (Place et al. 2002) and that the most important social support is that which comes from an intimate relationship (Conger & Conger 2002, Van Doesum et al. 2005). The ndings from this study give rm support for these claims and identify how a committed relationship is an important component of a thriving relationship. Families and relationships that ourish are

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founded on love and strength that comes from that love (Becvar 2007). The literature highlights a plethora of information about the long-term effects of chronic pain; however, none could be sourced that specically related to preoccupation or fear of what the immediate future may hold. In this study, fear was very clearly voiced by partners of people with pain. Initially, there is a preoccupation with getting through the diagnosis and sorting out the situation. But later, the emphasis was on what now? or where to from here? as they come to realise the impact of the illness. This caused the participants to reassess their situation and look for ways to help them have the best life possible as they attempted to deal with the challenges of chronic pain as part of their everyday reality. This nding, which may be an indication of resilience where a family faced with the adversity of chronic pain looks for ways to overcome it, has not been reported in previous studies on chronic pain and families. This suggests the need for partners and other family members to be supported and included in assessment, treatment and rehabilitation programs by nurses and other health professionals. It is recommended that information and education on strategies that can help family members to manage the impacts of their loved ones pain be incorporated into routine care. This could be in the form of written information specically for the family as well as direct discussion with family members. Nurses have the potential to take a lead role in this area of planning care and increasing family involvement.

heterogeneity must be given due consideration when reviewing the ndings of the study. The study is also limited by the fact that all participants were Anglo-Saxon and from a single regional area. This means people from other cultures and different settings may have different experiences. The study is also limited by the small sample size although qualitative studies often have samples of less than ten.

Conclusion
The ndings of this study reinforce the ndings of previous research and offer an expansion of what is already known. Considerable pain-related changes for partners and family members, such as role changes and emotional turmoil, were evident in the interviews. The study ndings support the understanding that chronic pain impacts every aspect of family life when a member experiences chronic pain including a considerable amount of time considering their future. This study supports the importance of a loving and committed primary relationship and found this to be a particularly important factor in helping the relationship and family ourish in the face of chronic pain. For clinicians, this is an important reminder to be inclusive of the partner and family when working with people who have chronic pain rather than focusing only on the individual and their symptoms. A family centred approach to care has the potential to enhance the connectedness between partners, which in turn may help the family to grow and even thrive despite the challenges presented by chronic pain.

Limitations of the study

Chronic pain is a term that covers a wide range of disorders, which means the experience of pain may differ across pain aetiologies, conditions and treatments. This

Contributions
Study design: CW, KU, KF; data collection and analysis: CW, KU and manuscript preparation: CW, KU, KS, LS.

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