Introduction
As the population of Australia ages, women continue to be the largest beneficiaries of this increased longevity. Australian women's life expectancy is expected to reach more than 90 years of age in the next few decades (Productivity Commission 2013). A significant consequence for these women is that 55 per cent of their older years will be lived with some form of a disability (Australian Bureau of Statistics 2015), suggesting that increased longevity does not always come with a healthy life expectancy (Davidson, DiGiacomo and McGrath Reference Davidson, DiGiacomo and McGrath2011).
A major contributor to the disability older women experience is the presence of a chronic medical condition. Chronic diseases are the leading cause of death and disability globally (Australian Institute of Health and Welfare 2014; Fowkes et al. Reference Fowkes, Rudan, Rudan, Aboyans, Denenberg, McDermott, Norman, Sampson, Williams, Mensah and Criqui2013; Hunter and Reddy Reference Hunter and Reddy2013). Peripheral arterial disease (PAD) is one such chronic condition which, similar to coronary artery disease (CAD), is caused by a build-up of plaque in the vessels resulting in blockages predominantly in the lower limbs (Hirsch et al. Reference Hirsch, Haskal, Hertzer, Bakal, Creager, Halperin, Hiratska, Murphy, Olin, Puschett, Rosenfield, Sacks, Stanley, Taylor, White, White and White2006). Consequently, sufferers of PAD experience extreme leg pain or weakness when walking or at rest, and often develop severe non-healing ulcers on the legs and feet (Aronow Reference Aronow2007). Another complication is the need for repeated surgical interventions to restore blood flow and save the threatened limb (Fowkes et al. Reference Fowkes, Rudan, Rudan, Aboyans, Denenberg, McDermott, Norman, Sampson, Williams, Mensah and Criqui2013; Hirsch et al. Reference Hirsch, Hartman, Town and Virnig2008; Hunter and Reddy Reference Hunter and Reddy2013; Jaff et al. Reference Jaff, Cahill, Yu, Birnbaum and Engelhart Luella2010). PAD not only impairs the individual's quality of life in terms of pain and immobility, but those with the condition suffer from a high risk of stroke, heart attack, gangrene, lower limb amputation and ultimately death (Hirsch et al. Reference Hirsch, Hartman, Town and Virnig2008).
Like CAD, PAD has mostly been thought of as a ‘middle-aged man's disease’, resulting in an underestimation of both the prevalence and impact of the disease in women (Hernandez-Vila Reference Hernandez-Vila2011; Hirsch et al. Reference Hirsch, Allison, Gomes, Corriere, Duval, Ershow, Hiatt, Karas, Lovell, McDermott, Mendes, Nussmeier and Treat-Jacobson2012; Kent, Patel and Varela Reference Kent, Patel and Varela2012). This ‘gender disparity’ has been evident in the lack of representation of women in clinical studies, and the tendency to under or belatedly diagnose women with PAD, resulting in reduced treatment options and poorer long-term outcomes (Barochiner, Aparicio and Waisman Reference Barochiner, Aparicio and Waisman2014; Kent, Patel and Verala Reference Kent, Patel and Varela2012; Lefebvre and Chevan Reference Lefebvre and Chevan2015). However, recent data have identified that not only are there more women than men with PAD, but that women suffer greater impairment and faster functional decline (Allison et al. Reference Allison, Ho, Denenberg, Langer, Newman, Fabsitz and Criqui2007; Barochiner, Aparicio and Waisman Reference Barochiner, Aparicio and Waisman2014; Hirsch et al. Reference Hirsch, Allison, Gomes, Corriere, Duval, Ershow, Hiatt, Karas, Lovell, McDermott, Mendes, Nussmeier and Treat-Jacobson2012; Kent, Patel and Verala Reference Kent, Patel and Varela2012). Why women present so differently is not well understood, however, recent findings suggest that women are diagnosed with PAD in their sixties and seventies, almost 10–20 years later than men and with advanced disease (Barochiner, Aparicio and Waisman Reference Barochiner, Aparicio and Waisman2014; Hiramoto et al. Reference Hiramoto, Katz, Weisman and Conte2014; Hirsch et al. Reference Hirsch, Allison, Gomes, Corriere, Duval, Ershow, Hiatt, Karas, Lovell, McDermott, Mendes, Nussmeier and Treat-Jacobson2012; Nguyen et al. Reference Nguyen, Liles, Lin and Bush2004). As such, many older women will experience advanced ageing with all that comes with PAD which has implications for their physical, mental and social wellbeing (Liles et al. Reference Liles, Kallen, Petersen and Bush2006; Smolderen et al. Reference Smolderen, Hoeks, Pedersen, van Domburg, de Liefde and Poldermans2009). Therefore, in light of increasing population growth and increased longevity of women, those diagnosed with PAD warrant further examination and understanding in order to plan for their needs and educate health professionals involved in their treatment.
Theories of ageing
Ageing research has predominantly focused on the losses that come with growing older (Baltes and Carstensen Reference Baltes and Carstensen1996; Villar Reference Villar2012). While it is impossible to deny that physical, social and cognitive decline and loss can be associated with the ageing process, it has also been identified as a time of growth, improved emotional wellbeing and enjoyment (Carstensen et al. Reference Carstensen, Turan, Scheibe, Ram, Ersner-Hershfield, Samanez-Larkin, Brooks and Nesselroade2011; Ryff Reference Ryff1989; Terrill and Gullifer Reference Terrill and Gullifer2010). Subsequently, the more optimistic concept of ‘successful ageing’ has emerged in recent years, accompanied by several different theoretical frameworks that attempt to describe the prerequisites for ageing well (Martin et al. Reference Martin, Kelly, Kahana, Kahana, Willcox, Willcox and Poon2015).
The selective optimisation with compensation (SOC) model proposed by Baltes and Baltes (Reference Baltes, Baltes, Baltes and Baltes1990) sought to describe the ‘processes’ that contribute to ageing successfully. By acknowledging the variability and plasticity of human development, this meta-model suggested that ageing is characterised by the engagement in adaptive processes that enable the individual to reach desired states or simply cope (Ouwehand, de Ridder and Bensing Reference Ouwehand, de Ridder and Bensing2007; Villar Reference Villar2012). The SOC model acknowledges that with ageing comes increased biological, social and psychological losses, however, it argues that successful ageing involves a balancing act that seeks to minimise these potential losses whilst maximising gains (Baltes and Carstensen Reference Baltes and Carstensen1996). Application of the SOC in older people with chronic illnesses has supported the view that these adaptive processes are an important function for individuals to employ to deal with the challenges that these illnesses pose (Gignac, Cott and Badley Reference Gignac, Cott and Badley2002; Nimrod and Hutchinson Reference Nimrod and Hutchinson2010; Rozario, Kidahashi and DeRienzis Reference Rozario, Kidahashi and DeRienzis2011).
Older women and ageing
Understanding how older women experience ageing is important not only in view of their increased longevity but also because their experiences are shaped within the construct of gender (Davidson, DiGiacomo and McGrath Reference Davidson, DiGiacomo and McGrath2011). The disparity in longevity means that from the age of 65 years women begin to outlive men, so that by 85 years women outnumber men two to one (Australian Bureau of Statistics 2012). A major consequence of this disparity for many women is widowhood which brings with it significant upheaval resulting from emotional bereavement, social adjustment and financial instability (DiGiacomo et al. Reference DiGiacomo, Lewis, Nolan, Phillips and Davidson2013). This upheaval can result from the loss of spousal income but also from the generally poorer financial position of women due to pay inequity, fragmented work histories and greater participation in unpaid work (Workplace Gender Equality Agency 2014). Older women are at a higher risk of poverty which has implications for housing stability as well as their physical and mental health and social support (DiGiacomo and Davidson Reference DiGiacomo and Davidson2013).
Older women have also been found to be more vulnerable to social isolation (Beal Reference Beal2006). This can be due to widowhood but often is related to their lower wealth which inhibits their ability to participate socially, or lifelong singlehood (Beal Reference Beal2006; Steptoe et al. Reference Steptoe, Shankar, Demakakos and Wardle2013). The prevalence of chronic illnesses and disability is also higher in older women which results in worse health-related quality of life (Orfila et al. Reference Orfila, Ferrer, Lamarca, Tebe, Domingo-Salvany and Alonso2006). Furthermore, as traditional supportive networks such as the family change due to shifting social and demographic factors, older women are often left in vulnerable and socially isolated situations (DiGiacomo and Davidson Reference DiGiacomo and Davidson2013).
An older woman's experience of ageing will naturally be shaped by their economic, social and physical circumstances so these factors should also be considered in relation to individual goals and expectations (Russell Reference Russell2007). Inquiring into older women's views of successful ageing, Rossen, Knafl and Flood (Reference Rossen, Knafl and Flood2008) found those transitioning into residential care viewed ‘ageing well’ as the acceptance of physical, relational or environmental change whilst remaining engaged with life. Although health was the primary reason many of the women were relocating, emphasis was on maintaining a sense of continuity which was pivotal to their sense of successfully ageing (Rossen, Knafl and Flood Reference Rossen, Knafl and Flood2008).
An important theme that emerged from women in a seniors community interviewed by Hurd (Reference Hurd2000) was their categorical rejection of the stereotypical view of ageing and any association with ‘oldness’. These women defined themselves as ‘not old’ and portrayed ageing and widowhood as the best time of their lives. This positive perception was predicated on their identification as active members of a community of energetic women, downplaying health concerns that may alter their involvement with the group and place them at risk of becoming ‘old’ (Hurd Reference Hurd2000). Positive self-perceptions of ageing have been found to play an important role in longevity and may be linked directly to the quality of older women's experience (Levy et al. Reference Levy, Slade, Kunkel and Kasl2002).
Older women ageing with a chronic illness
Little is known about the older women's experience of the phenomenon of ageing with a chronic disease. Self-concept has been reported to play an important role in the shaping of an individual's views of ageing (Carstensen and Hartel Reference Carstensen, Hartel, Carstensen and Hartel2006). Wilkins’ (Reference Wilkins2001) exploration of the relationship between self-concept and the meaning of ageing in women with osteoarthritis found that when women expressed a positive, more confident self-belief, ageing was viewed as a natural process entailing a time of new-found freedom and wisdom. Conversely, those with disparaging views of themselves perceived ageing as a time of loneliness, loss and deterioration. Importantly, the women with the disparaging-self felt overwhelmed by ageing and their illness, which possibly reflects the devastating effect a chronic illness can have on self-worth (Wilkins Reference Wilkins2001).
Self-concept and ageing emerged as an important theme in a study that examined how older women interpret their health in the context of daily life. Roberto and McCann (Reference Roberto and McCann2011) interviewed older women with chronic illnesses and found that perceptions of everyday experiences of health were dependent on the interaction of ‘selves’ rather than on the illness itself. One such identity, the ‘ageing-self’, revealed that most women used ageing stereotypes in their narratives and when referring to their medical conditions tended to attribute or name their poor health as ‘old age’ (Roberto and McCann Reference Roberto and McCann2011).
For older women with PAD, there is little in the way of research exploring their specific experiences, though a few medical groups have investigated the broad experiences of PAD sufferers. Despite its prevalence and links to coronary disease, PAD is very rarely even acknowledged as a chronic illness in the literature (Wann-Hansson et al. Reference Wann-Hansson, Hallberg, Klevsgård and Andersson2008). Wann-Hansson et al. (Reference Wann-Hansson, Hallberg, Klevsgård and Andersson2008) looked at the long-term experiences of post-surgical PAD patients (nine men and five women) and found that most participants held on to unrealistic expectations of the benefits of the procedure. As such, they were forced to alter their prior assumptions of being cured and learn to accept and live with the ongoing repercussions of their condition (Wann-Hansson et al. Reference Wann-Hansson, Hallberg, Klevsgård and Andersson2008).
Themes of powerlessness and pain emerged in a study examining the experiences of six men and three women following vascular bypass surgery for PAD (Gibson and Kenrick Reference Gibson and Kenrick1998). Individuals identified feelings of loss of control resulting from the many changes to independence, lifestyle, normality and mobility due to PAD's progression. Additionally, sufferers were exasperated as they experienced pain and immobility interspersed with sudden blockages of the leg blood vessels warranting immediate medical intervention (Gibson and Kenrick Reference Gibson and Kenrick1998). Likewise, Treat-Jacobson et al. (Reference Treat-Jacobson, Halverson, Ratchford, Regensteiner, Lindquist and Hirsch2002) investigated the effects of PAD on health-related quality of life through interviews with 24 men and 14 women. Again, themes emerged of lack of control, fear and loss of self resulting from the significant physical limitations of PAD. These studies attest to the emotional toll that PAD can have on the individual and demonstrates how the acute and chronic components of PAD complicate the process further (Gibson and Kenrick Reference Gibson and Kenrick1998; Marrett, Dibonaventura and Zhang Reference Marrett, Dibonaventura and Zhang2013; Treat-Jacobson et al. Reference Treat-Jacobson, Halverson, Ratchford, Regensteiner, Lindquist and Hirsch2002).
There is growing acknowledgement in the medical arena that older women with PAD have been under-represented in clinical trials, are under-diagnosed and have worse outcomes (Hirsch et al. Reference Hirsch, Allison, Gomes, Corriere, Duval, Ershow, Hiatt, Karas, Lovell, McDermott, Mendes, Nussmeier and Treat-Jacobson2012; Kent, Patel and Verala Reference Kent, Patel and Varela2012; Stavroulakis et al. Reference Stavroulakis, Donas, Torsello, Osada and Schönefeld2015). This aligns with other research that indicates the lack of focus and inclusion of women across many clinical areas results in significant gender-bias which impacts their health outcomes and economic status (Holdcroft Reference Holdcroft2007). Davidson, DiGiacomo and McGrath (Reference Davidson, DiGiacomo and McGrath2011) suggest that as older women continue to experience inferior health outcomes, a greater understanding of how women conceptualise and experience the process of ageing with chronic illnesses is essential to address this discrepancy adequately. Thus, the current study aims to explore how older women with PAD experience ageing using a qualitative research approach to provide valuable insights into the experiences of these women.
Methodology
Participants
Women over 65 years of age who had experienced PAD requiring surgical interventions and continuing medical monitoring for their condition and who were prepared to be interviewed were invited to participate in the study. A total of 11 women were recruited and interviewed for the project. Participants ranged in age from 69 to 91 with a mean age of 80. All participants had been diagnosed with PAD and had undergone various interventions (either open surgery or minimally invasive procedures) for their conditions over a period of seven years. All continued to experience pain either upon walking or rest. They were all from Sydney, Australia and living at home. Two were single, five were living with their husbands or partners and four were widowed.
Procedure
Ethics approval was first obtained from the Charles Sturt University Human Research and Ethics Committee. A flyer advertising the study was placed in various areas that vascular patients would be accessing in a hospital in Sydney, Australia. The flyer was also passed on to contacts within the health arena who knew women who fit the criteria. Written informed consent was obtained prior to the interviews and these were conducted by the first author. Semi-structured interviews were conducted either in a medical office at the hospital or in the participant's home. Interviews lasted between 39 and 114 minutes. Interviews were guided by open-ended questions that broadly covered domains of experiences of health, PAD and ageing (see the Appendix).
Data analysis
To gain an in-depth understanding of older women's experience of ageing with PAD, a qualitative methodology was chosen. Qualitative research methods are constructed to facilitate the exploration of the participant's lived experience. As such, individual one-to-one semi-structured interviews were chosen as the method of data collection. Interviews allow the individual to provide a personal account of their particular experience which adds a layer of richness to the data that would not be possible using questionnaires or other data collection methods (Polkinghorne Reference Polkinghorne2005).
The interviews were audio-recorded and transcribed by the first author. Individuals’ personal details were de-identified (Braun and Clarke Reference Braun and Clarke2006) and pseudonyms assigned. An inductive thematic analysis is not tied to any theoretical framework (Braun and Clarke Reference Braun and Clarke2006) enabling a flexible approach, so this was selected as the method of analysis. Using a practical but rigorous method allows each participant's perspective to be thoroughly examined to identify similarities, differences and uncover unanticipated insights. Thus, a rich, complex account of the data itself can be identified and detailed (Nowell et al. Reference Nowell, Norris, White and Moules2017). Thematic analysis involves the searching for and identification of recurrent patterns of meaning that participants place on their experience that occurs within the data. These patterns are then analysed and sorted into themes (Braun and Clarke Reference Braun and Clarke2006).
The analysis began with an initial reading of each interview separately and noting of any ideas or interesting items relevant to the phenomena of ageing with PAD. The data-sets were then re-read, and initial codes were produced by identifying and naming interesting aspects (extracts) of the data related to the research aims. The different codes from the entire data-set were then grouped into nine potential themes. Working between the potential themes and the data-sets, the analysis to identify overarching themes began resulting in the collapsing of several of the potential themes and the identification of three main overarching themes (Braun and Clarke Reference Braun and Clarke2006). Each transcript was then re-read carefully to identify data extracts that reflected each of them. The themes were labelled and defined, and several sub-themes were identified. The data were again re-read to ensure evidence for each theme was clearly identified and a point of saturation was reached whereby no more new evidence was found.
Findings
The thematic analysis resulted in the construction of three manifest themes. These were: (a) independence and control, which highlights the desire of the women to remain in charge of the decisions in their life as they grow older; (b) active and involved, which emphasises the need to be physically and mentally occupied and engaged; and (c) acceptance of ageing, which highlights the acknowledgement of ageing as an inevitable process which also involves coming to terms with the final stage in their lives whilst often feeling ageless inside.
Theme 1: Independence and control
This theme reflects the desire to continue to live and function independently and remain in control of their lives despite the effects of ageing and decreased mobility. Each of the women interviewed expressed the importance of being able to continue to make their own decisions and to function and interact freely without interference or uninvited assistance. This theme reflects a continuation of lives that had been shaped by life's circumstances such as work, raising families, financial responsibilities, hardships or widowhood which had provided these women with autonomy and control throughout their lives, as reflected by Beth:
I didn't have brothers and sisters so I've always had to think for myself and I had no-one to help me like with homework and things, I've had to think for myself all the time. Being on my own I'm still doing the things I did in my marriage. I know when all the bills are due and things like so I've always used my brain … to plan ahead. (Beth)
Beth's quote alludes to not only the immense pride that these women derive from having been resourceful and capable since a young age, but also suggest that their independence is integral to how they see themselves.
Although the desire to remain independent was universal, the degree to which independence and control was manifested differed across the group. Experiences of independence ranged from living alone or continuing to drive through to being able to do simple activities of daily living independently. The mere ability to do one's own shopping or continue to cook was paramount to retaining some control. This was exemplified by Florence, whose ability to walk had been severely limited by PAD:
I'll still carry with my other half and … I'll carry the washing out or whatever … See if I can do it. (Florence)
This comment by Florence displays how such seemingly small daily acts can help to enhance the women's belief in their ability to function successfully which in turn gives them a sense of control (Mallers, Claver and Lares Reference Mallers, Claver and Lares2014). Indeed, personal control provides a basis for empowerment and autonomy that can have dramatic benefits on physical and mental health, and ultimately on the ageing process itself (Mallers, Claver and Lares Reference Mallers, Claver and Lares2014; Rodin and Langer Reference Rodin and Langer1977). The desire to remain autonomous was evident in the oldest participant, Pamela, who at 91 years of age continues to live alone and enthusiastically responded to questions regarding independence and control:
I don't ask permission from the children, I don't do stupid things but if I want to do something I do it … and then I tell them (laughs) … I do! I do control my own life yes … until the day I die. (Pamela)
Pamela's remark acknowledges her children's place within her life but emphasises that the ultimate decision-making rests with her. Although most individuals in their nineties have to accept a certain level of interdependency, maintaining the ability to make choices that are consistent with one's personal characteristics and priorities ensures their on-going integrity (Gawande Reference Gawande2014; McCann Mortimer, Ward and Winefield Reference McCann Mortimer, Ward and Winefield2008; Sixsmith et al. Reference Sixsmith, Sixsmith, Fänge, Naumann, Kucsera, Tomsone, Haak, Dahlin-Ivanoff and Woolrych2014; Stones and Gullifer Reference Stones and Gullifer2014).
However, the combination of increased age and chronic health conditions has invariably resulted in the relinquishing of responsibilities and activities for these women. Consequently, many experienced a sense of loss as the freedom to choose was removed. For Alma, the emotional pain of not being able to participate freely in enjoyable activities was at times overwhelming:
I wished I hadn't I gave up my licence but I used to be very independent, and drive down to the pool and everything but now I don't … that's something that has really affected my life now because I can't just duck down to the pool, I can't, I can't drive any more. (Alma)
Alma's quote alludes to a sense of powerlessness as she lamented having to relinquish her driver's licence which had allowed her a great sense of freedom. As one of the greatest expressions of independence, losing the ability to drive can be an extremely significant event for older adults which can create feelings of loss of confidence, isolation and dependency (Buys and Carpenter Reference Buys and Carpenter2002; Whitehead, Howie and Lovell Reference Whitehead, Howie and Lovell2006). Indeed, for many of the women the combination of age and ill-health had resulted in the reluctant surrendering of their driver's licences which had repercussions for their ability to function without assistance:
All these aches and pains and the back problem … it's a really big bit of a hindrance for me. I can't do things on my own … And I had to stop driving because I'm 85. (Phyllis)
Phyllis's comment describes her despondency as she has become dependent on others to even leave the house. Her comment reflects a dominant thread in the discussions with these women as they chartered the impact that ageing with an illness such as PAD can have on simple everyday events. Chronic illnesses often serve to erode individual control through physiological changes to mobility or cognition which limits the ability to exert influence over daily activities (Gibson and Kenrick Reference Gibson and Kenrick1998; Hummel Reference Hummel, Lubkin and Larsen2008). Moreover, the corresponding perceived or real lack of power can have detrimental effects on the individual's expectations, resulting in worse health and psycho-social outcomes (Gibson and Kenrick Reference Gibson and Kenrick1998; Hay Reference Hay2010; Hummel Reference Hummel, Lubkin and Larsen2008).
Loss of control was especially salient for Joan who was suddenly hospitalised:
That was my hardest thing of anything that's happened that here I was lying in a bed and I had no control of anything, I had to think of rent being paid, bills being paid, all those things I had no control of. (Joan)
Joan's comment highlights the difficulty associated with suddenly having to relinquish control and rely on others for possibly the first time in her adult life. Such a dramatic change in circumstances can be an enormous adjustment which can have profound effects on the dignity of private, autonomous and independent older adults (Woolhead et al. Reference Woolhead, Calnan, Dieppe and Tadd2004).
For many of the women, however, loss of control in one domain has resulted in a redirection of resources. As theorised by Baltes and Baltes (Reference Baltes, Baltes, Baltes and Baltes1990), many of the women seemingly utilised selective optimisation with compensation by altering their priorities or changing aspects of their lives to accommodate the impact of chronic illness and ageing. For Shelley, very pragmatic changes have allowed her to remain at home, as well as maintaining her independence:
I have a Vital Call so that if I have a fall or something and I need help … I did that after I had a fall here … I chickened out and just got the restricted licence because I don't drive any further than probably the ten kms [kilometres]. (Shelley)
Shelley's experience also illustrates what Perkins et al. (Reference Perkins, Ball, Whittington and Hollingsworth2012: 219) call ‘miniaturization of autonomy’ whereby the individual reduces their expectations whilst assigning greater value to what they have functional control of. Such actions ensured these women could maintain a level of independence to allow them to remain at home, which was one of the most expressed ambitions.
A distinctive feature of the discussions was the effect that relationships with family and friends had on the women and their sense of independence. For many, family is firmly entrenched in their lives, and their presence and assistance was immensely valuable. This was certainly the case for Margaret who lived with her son and family and shared everything from meals to child care and finances:
I'd cook dinner for them … and when they'd come down I'd make it up in their pot so they could take it upstairs or I'd put it on the table. If I've got, I give to them. (Margaret)
Margaret's sentiments reflect how remaining engaged with family can provide the opportunity to continue to live and function at home which was welcomed by many of the women. For Dawn, the effects of multiple chronic conditions has impacted her daily functionality so her daughter and husband are integral to her wellbeing:
She keeps an eye on me all the time – are you alright? do you want something?, etc. And she makes sure that I do the right things … J takes me everywhere and makes sure I have my tablets. (Dawn)
Dawn's quote describes her contentment and gratitude that she felt towards her family following her decision to accept their assistance to remain at home. Arguably being able to make the choice to ask for and receive assistance is a major contributing factor to an individual's self-worth that can contribute to a sense of control (Mallers, Claver and Lares Reference Mallers, Claver and Lares2014).
In some instances, the change of role from family member to carer and the subsequent shift in the dynamics of the relationship can be a difficult transition. Indeed, it can amplify the loss of independence so that the individual's sense of self may feel threatened or diminished (Henderson Reference Henderson2001). This change from spouse to carer was especially salient for Florence, whose partner had begun caring for her due to her decreased mobility:
He's my carer because I can't vacuum and different things but I love cooking, I'll cook and I'll wash and that's about as far as I can go … well he's my husband, he's my carer now. (Florence)
This change in role was difficult for Florence as the boundaries that defined her sense of what an intimate partner represented were blurred. Such a shift can often result in a loss of identity as the relationship changes and roles are reconfigured (Rodham, Rance and Blake Reference Rodham, Rance and Blake2010). Moreover, for many women caring is often seen as a natural role that spans their lifecourse. Being cared for, however, is an often a more uncomfortable proposition and can potentially make them feel they are a burden to others (Howarth Reference Howarth1998; Treat-Jacobson et al. Reference Treat-Jacobson, Halverson, Ratchford, Regensteiner, Lindquist and Hirsch2002).
Although for some of the participants, living with adult children was an acceptable or desired option, for others family support was viewed as a potential threat to their individual independence and control. Many of the women interviewed expressed a desire to remain in their own homes despite the offers from children to accommodate them. For Olive, still living with her husband, her children's offers of assistance were unwanted:
They're all grown up now and telling me what to do … I like to stand alone, I don't want to be owned by anyone else, not my children, I want to be making my own decisions and planning what I want to do. (Olive)
Despite her age and illnesses, Olive guarded her independence and freedom fiercely and was still able to maintain control of most aspects of her life. For Beth, the prospect of living with her children not only highlighted the likely loss of her independence but also made her cognisant of the how the change in circumstances would potentially alter her relationship with her children:
I would not like to go into a nursing home and I wouldn't like to go and live with my children … one daughter is wanting me, she doesn't think I should be on my own, she wants me to go to there, but no I want to stay in my own home. (Beth)
Beth's comments reinforce the difficult decision that confronts many older women as they age alone. Their desire to live and die in their own home, which is seen as a place of familiarity and autonomy, is often countered by the concerns of others about their safety and the ability to function (Gott et al. Reference Gott, Seymour, Bellamy, Clark and Ahmedzai2004).
Arguably, for many of the women interviewed their older age, health concerns and increased frailty have raised the possibility of eventually needing additional care. The understanding that their ability to function independently may be compromised by physical and mental decline was articulated by Shelley:
Your brain's not going to be as alert and as active. I find now I'm forgetting things and doing silly things, I mean I'm still aware that they're the wrong things but who knows? A couple of months’ time I mightn't be aware. I think that worries you a little bit too. (Shelley)
Shelley's comment reflects an appreciation that no matter what systems are in place, some deterioration that comes with ageing is inevitable. That this decline will result in a loss of independence can cause anxiety and fear in older adults as they contemplate their future (Quine and Morrell Reference Quine and Morrell2007).
As a direct consequence of their age and illnesses, many of the women interviewed were aware that eventually some form of assistance or an alternative to living at home, such as a residential aged care home, may be needed. Indeed, women make up nearly three-quarters of all residential aged care residents in Australia (Australian Institute of Health and Welfare 2012). A fear of these residential aged care homes is a common factor that many older people have around their declining health and subsequent loss of independence (Quine and Morrell Reference Quine and Morrell2007). This trepidation was a common thread in many of the women's narratives and stemmed from either direct experience of residential aged care homes or just a general sense of residential aged care homes being places to be avoided. For Phyllis, whose husband died after what she considered was neglect in a residential aged care home, the dread of ending up in one was very vivid:
I'm hoping and praying to God that I'm able to stay here until I die. I hate the thought of going into a nursing home … I have to agree I am becoming more dependent on her now because as least before I could do it on my own in that way but she keeps telling me if you fall and break your hip or anything who may look after you? You will have to go to the nursing home. (Phyllis)
Phyllis's anxiety around residential aged care homes meant that she was forced to relinquish various expressions of independence to prevent any mishap that may result in an admission for complex nursing care.
For many of the women interviewed, however, their declining health and increased age means that a residential aged care home may be the only alternative possible, as Shelley surmised:
No, I wouldn't like to … I mean if the time comes that I couldn't look after myself yes I would have to do that. (Shelley)
Shelley reflects the reality for many older women who, when faced with no viable alternative, must confront the difficult decision of where they will live as they age. This was certainly the case for Pamela, whose realisation that she was unable to maintain her house due to the effects of PAD made her actively seek an assessment for a residential aged care home:
When I found I couldn't garden, couldn't do my own work and things like that I thought maybe I can go into a home … lasses came and assessed me and they said no. They said you're too bright to go into a home you'd die within 12 months. He said no we can help you this is home care, we can help you. Somebody to do the work and somebody to do the lawn but you can still do your reading and your crocheting and sewing and whatever and I do my own cooking. (Pamela)
The joy for Pamela to be able to remain in her own home was immeasurable and reflected the simple notion that by providing the support and means for older women to maintain a certain level of independence, staying at home can remain a very real possibility. Indeed, older women are often greatly attached to their home, therefore remaining in place can contribute to their ongoing autonomy and continuation of their sense of self (Russell Reference Russell2007; Stones and Gullifer Reference Stones and Gullifer2014).
Thus, retaining independence and having control of their lives was an incredibly important feature of these women's experience of ageing and contributed to their happiness, dignity and wellbeing. Older women are often perceived as being increasingly vulnerable and dependent, and certainly social and economic factors contribute to many women experiencing reduced independence with ageing (Davidson, DiGiacomo and McGrath Reference Davidson, DiGiacomo and McGrath2011). However, these women's often small expressions of independence were powerful contributing factors to their overall sense of wellbeing. Just being able to continue to shape their lives according to their own individual characteristics and priorities was viewed as vital.
Theme 2: Active and involved
This theme reflects the desire to be actively involved in life and to continue to be physically, mentally and socially engaged. For the women in this study, their younger years had been defined by work, sports and activities, rearing families, challenging intellectual pursuits and social interactions. When asked about their general health, almost all responded by downplaying any health-related interruptions, focusing on how active and busy they had always been. The desire to be physically and mentally engaged reflected a need to continue patterns that had brought great joy throughout their lives. For instance, Olive believed that being physically and mentally active was of vital importance and her enjoyment of it was palpable:
I still need to be physically active … I've always been physically active and I'd hate to lose that … If I lose one, like if I lose bowls, I'll find something else! (Olive)
Although Olive's enthusiasm, ability and desire to continue to play competitive sports was unique amongst this group, the interviews with all the women reflected a deep desire to remain active in some shape. Although Phyllis has problems with balance, her recollections of dancing and the pleasure that can come from simple movement emerged during the conversation:
I used to do a lot of dancing and now when I hear the music and I just want to dance (laughs) and I think of all the lovely dances I went to and I still sort of have that thing to dance and I hold the chair and I'll be just (sways). (Phyllis)
This small very personal and touching act by Phyllis conveyed the importance of being able to continue to physically engage the body in movement or exercise which can be enormously beneficial for mental health and wellbeing (Bowling Reference Bowling2009; Fox et al. Reference Fox, Stathi, McKenna and Davis2007).
As well as physical activity, remaining mentally engaged was valued by all the women in the study. Whether it was working on puzzles and crosswords, reading or doing crafts, each of the women employed some mental activity as a means of remaining occupied and stimulated, as well as to stave off cognitive decline. For Beth, balancing the weekly ticket sales at her local dance school was an important activity that also kept her involved socially:
I think it's keeping my brain active and I usually count out how much money should be there with how many tickets I've sold and I like to know it balances each week … I don't use a calculator I do it mentally. (Beth)
For Beth, who can no longer participate in the dancing, the continued contact with the school served many other beneficial purposes. It kept her mentally engaged and socially active but also allowed her to contribute to the group that she had been involved with for many years. Such generative interests not only allow the individual to give back to the community or to the next generation, it can also help to foster positive emotions and enhance an individual's wellbeing (Kahana et al. Reference Kahana, Bhatta, Lovegreen, Kahana and Midlarsky2013; Villar Reference Villar2012).
Some of the women spoke of remaining stimulated and interested in travel and the world as another way of staying active. Daphne conveyed her need to experience new places even if they were just a short train ride away:
I need to keep well, I need to get out and I need to see what I haven't seen … because I was always working all these years you know and had no chance to get there. (Daphne)
Daphne conveys a sense of urgency and awareness that her time to do everything she would like is limited. Indeed, it hints at the need to move beyond the four walls of her home and the restrictions that ageing with a chronic illness can have on an individual. Trying novel activities such as travelling or engaging in different pursuits contributes to an individual's growth and can strengthen the perception of successful ageing (Reichstadt et al. Reference Reichstadt, Sengupta, Depp, Palinkas and Jeste2010). Moreover, it reflects an agentic-adaptive generative process that aims to strengthen the self which can enhance the ageing process (Villar Reference Villar2012). This was also reflected in Phyllis's declaration:
I really started to get alive and started to get interested in doing more things and learning more things in my old age! (Phyllis)
Phyllis points to how ageing had provided her with a burst of creativity and a desire to experiment and learn new activities, which stemmed from a new-found freedom from family and work commitments. This goes against the traditionally held view of ageing as a time of decline or stagnation, and suggests that personal development and growth for many is an important element of ageing (Ryff Reference Ryff1989; Villar Reference Villar2012). Moreover, the removal of work and caring responsibilities provides an opening for many older women to explore new possibilities without previous encumbrances and is similar to what Terrill and Gullifer (Reference Terrill and Gullifer2010) termed ‘the free and busy me’.
A vital aspect of many of the women's lives was their social involvement and engagement with others. For some, interacting mostly with family and the occasional contact with the local community was the main form of contact, as Margaret explained:
I enjoy the kids, I enjoy my son, I enjoy my daughter-in-law … I enjoy going out shopping, it takes me hours to shop because I see everyone I haven't seen for a while. (Margaret)
Like many of the women interviewed, Margaret's family formed her principle social circle. Indeed, family for many is perceived as a vital social outlet which is common for older people who require more care and support (Huxhold, Miche and Schüz Reference Huxhold, Miche and Schüz2014). For others, external friendships and engagement in local groups were important and provided them with much-needed social interaction and a sense of purpose, as described by Shelley:
I still keep in contact of what's left of those old walking group, still meet the last Sunday of every month and have lunch. A lot of those have passed away but we still keep in contact with the ones that are left. (Shelley)
Contact with her church groups, friends, neighbours and family reflected Shelley's wish to remain actively connected and embedded in her community. Social engagement within different domains is regarded by many older people as a key contributing factor to quality of life (Gabriel and Bowling Reference Gabriel and Bowling2004). Maintaining multiple social relationships also serves to provide much-needed ongoing support for older women in the face of inevitable losses with the passing of spouses, family and friends (Walker and Hiller Reference Walker and Hiller2007).
For this group of women, the loss of mobility was a difficult consequence of their chronic illness, and it often impacted on the women's ability to be socially interactive and involved. The feeling that ‘you're not keeping up’, as Shelley recounted, was a common thread in the discussions that contributed to feelings of self-enforced social isolation. For the younger women interviewed, the impact of slowing down and requiring assistance was often too much to bear, as both Florence and Joan recounted:
I couldn't walk … and I couldn't meet up with people … and I got that way that I didn't want to be me like I was… (Florence)
I'm invited out all the time and you really do get sad. (Joan)
These comments allude to the detrimental effect that the pain and immobility caused by PAD can have on the individual's self-esteem and sense of self. Moreover, other research has shown that individuals with PAD often report feelings of inadequacy and loss as they deal with the physical limitations of the disease (Treat-Jacobson et al. Reference Treat-Jacobson, Halverson, Ratchford, Regensteiner, Lindquist and Hirsch2002). The immobility and subsequent decreased functionality that PAD causes can contribute to feelings of depression as individuals struggle to engage in previously enjoyable activities (Liles et al. Reference Liles, Kallen, Petersen and Bush2006).
Accompanying the reduced mobility is the extreme pain that is experienced upon walking, which can have a devastating impact on an individual's perception of quality of life (Regensteiner et al. Reference Regensteiner, Hiatt, Coll, Criqui, Treat-Jacobson, McDermott and Hirsch2008). A recurring theme amongst the women was how the pain could become so debilitating that it would interrupt any movement, as described by Florence who was forced to retire from work at 60 years of age due to the pain associated with PAD:
I'd have to sit down because the pain would get so bad I'd have to sit. I'd do something and then I'd sit down and then I'd get up once the pain would go. (Florence)
The complete interruption of normal everyday simple movements, as described by Florence, has multiple flow-on effects as inactivity not only worsens PAD but can contribute to other health problems (Barochiner, Aparicio and Waisman Reference Barochiner, Aparicio and Waisman2014). For Daphne, the pain has not only stopped her from doing enjoyable activities, it has prevented her from being able to interact with her grandson in a way that had previously brought her great joy:
I could finish work and I used to play tennis … Now I can't even run with my grandson. (Daphne)
In this comment, Daphne describes how PAD can undermine daily functioning which may seem small, but has the potential to alter the roles and responsibilities the individual had traditionally filled, negatively impacting their self-perception (Treat-Jacobson et al. Reference Treat-Jacobson, Halverson, Ratchford, Regensteiner, Lindquist and Hirsch2002). This was true for many of the women as they described doing less to help with grandchildren or completely cutting out caring roles altogether.
Alma's loss was more tangible as she struggled with the inability to go swimming due to a non-healing leg ulcer:
If only I could get back into the water … it's stopped me from swimming and it breaks my heart, sometimes I cry to myself because I can't go for a swim. I just I feel as if I was a mermaid at some stage in my life because I love it. (Alma)
Alma describes her sadness and frustration as the disease took away an activity that brought her daily enjoyment and a level of fitness. For older adults who place a great deal of importance on physical activity, such a loss can be devastating (Netz et al. Reference Netz, Wu, Becker and Tenenbaum2005). Alma's reference to feeling like she was ‘a mermaid’ attests to the degree to which swimming was integral to her identity and the loss of it is akin to losing a part of herself.
Coming to terms with the limitations that accompanied the onset of PAD and ageing saw many of the women alter the level of activity whilst still participating in enjoyable pursuits:
I can't get down to gardening but I've got pot plants and so I grow cactus, orchids and things on the back patio and I sit down at a table and chair and attend to them so that's the only gardening I can do … It's keeping me. (Beth)
That's why I'm taking up art because if I'm no longer mobile at least I've got that and reading. (Olive)
Both Beth's and Olive's comments suggest they are utilising the SOC model in order to adapt to their changing circumstances and abilities (Baltes and Carstensen Reference Baltes and Carstensen1996). Beth's quote demonstrates how the modification of more strenuous activities has enabled her to balance her loss with an altered and acceptable version of the activity, whilst Olive's reflects a more pre-emptive approach to potential losses. This process of adapting or compensating to accommodate various challenges was present in many of the women's narratives as they substituted activities. By acknowledging the losses and changing their goals, the ability to remain engaged and active was possible, which contributed to a sense of satisfaction and wellbeing (Baltes and Carstensen Reference Baltes and Carstensen1996).
In summary, this theme explored how ageing for these women consisted of the need to remain physically and mentally active, socially involved and even adventurous. Of course, none were free from the impact that their illnesses and ageing have on their physical and mental functionality. However, by adapting to the changes presented they continued to participate actively albeit in a different way. Engagement in activities are in themselves gendered, with older women generally preferring non-physical activities including social interactions (Szanton et al. Reference Szanton, Walker, Roberts, Thorpe, Wolff, Agree, Roth, Gitlin and Seplaki2015). Thus, it may be that older women are better prepared for the limitations that ageing with a chronic illness can bring.
Theme 3: Acceptance of ageing
The final theme embodies the women's overall acceptance of ageing as a natural progression in life, whilst being aware of the losses and finality that are inevitable. Many of the women referred to feeling an ‘internal youthfulness’ despite advancing chronological age. All of the women interviewed conveyed a strong desire to accept ageing and keep on enjoying living:
Well, it's just a fact of life. That's how I see it. Nothing I can do to prevent it. I just have to enjoy the time that I have and I look forward, I don't ever think you know am I going to be here next year. I don't think in those terms. (Olive)
Olive's quote exemplifies many of the women's attitudes to ageing which recognises that although the greater part of their life was over, they were determined not to focus on their mortality but rather on living itself. By adopting a pragmatic approach to growing older, the inevitable and irreversible changes that accompany ageing are more easily accepted which encourages a sense of wellbeing and happiness (Ranzijn and Luszcz Reference Ranzijn and Luszcz1999; Rossen, Knafl and Flood Reference Rossen, Knafl and Flood2008; Terrill and Gullifer Reference Terrill and Gullifer2010).
Although there was an overall acceptance of ageing as a natural life process, the meanings ascribed to the ageing process differed between the younger and older women in the study. Pamela, who at 91 years of age was the oldest participant in the study, responded to the question ‘how do you feel about growing older?’ by declaring that it was not even in her thought processes:
Look I don't even think about growing older! … I mean I'm on the downward run! (Pamela)
Pamela has achieved considerable longevity and is comfortable with the temporality of her life. Indeed, Pamela spoke at length about her plans for donating her body to science when she dies, which for her was construed as a means of assisting others. Such generative sentiments suggest the conscious desire to continue contributing, which for many older people is fundamental to their sense of wellbeing (Kahana et al. Reference Kahana, Bhatta, Lovegreen, Kahana and Midlarsky2013; Villar Reference Villar2012). Moreover, her comment demonstrates a complete acceptance of her mortality similar to what Heikkinen (Reference Heikkinen2004) found in her study of 90-year-olds’ experiences of ageing whereby they felt they had lived their lives and were content to accept the next stage. In a sense, Pamela has reached a point where she was able to live the final passage of her life fully and unencumbered by fear. This acknowledgement and recognition of one's own mortality resonates with the idea that as we age we continue to develop and adapt to our circumstances (Villar Reference Villar2012). Acceptance of one's mortality also is an example of the optimisation of available resources in the face of loss which can contribute to a sense of satisfaction with where one is in life (Baltes and Baltes Reference Baltes, Baltes, Baltes and Baltes1990; Baltes and Carstensen Reference Baltes and Carstensen1996).
The participants in their late seventies and eighties (79–88) viewed ageing differently from Pamela in that they clearly appreciated that their advanced years and health were impacting on their experience of ageing. Most oscillated between recognition of their age and cognisance of what the future holds:
I just have to keep saying how lucky I am for my age and that's what keeps me going, that's my attitude … It's just semantics that are staring you in the face, the fact that you're going to die fairly soon if not in a year like even five or six years. It's like a death sentence really. (Alma)
I think you tend to need to give in to the fact that you know, I might not be here tomorrow … the thing is we don't make plans ahead obviously, there's no point. We just enjoy ourselves. (Dawn)
Alma and Dawn's comments describe the women's conscious awareness of their mortality and their realisation of the impermanence of life which was in some ways quite frightening. Certainly advancing age is a time when many ponder the existential questions about death, what happens afterwards and the notion of whether they had lived a meaningful life (Depaola et al. Reference Depaola, Griffin, Young and Neimeyer2003). Combined with this are questions of a more practical nature such as whether there will be a need for additional care for themselves or the future of family members, as articulated by Phyllis:
I worry about my children, both of them are single and will be left alone when I go and I worry about them how when you get old how you need someone to look after you. What's going to happen to them you know? (Phyllis)
Phyllis's comments attest to her continual responsibility as a mother despite the adult age of her children and her advanced age and frailty. Her role is one that many older women continue to play throughout their lives. In a sense, Phyllis was entering into what Emanuel, Bennett and Richardson (Reference Emanuel, Bennett and Richardson2007) termed the dying role whereby we actively acknowledge we are entering the last stage of the lifecycle. Part of this role encompasses the desire to address the practicalities of dying and in this study, most of the women spoke of wanting to ensure that their children, grandchildren or spouses were adequately provided for when they died. Indeed, preparations and planning for their death was prominent in the discussion with all the older women in the study as they spoke of tidying up and preparing others for when they die:
I don't want someone else having the worry of coming in and throwing this and that out. (Beth)
I quite often say to the boys, try to tell them you know something or where something is or if something happens to me this is where … because it's something you have to face, well they will. (Shelley)
The combination of seeing friends and family die and the noticeable physical and mental deterioration that accompanies their ailments and age had alerted the women to the possibility of their own end. Death and dying had now moved clearly into their worldview and one way of acknowledging it was to approach it in a very practical manner (Emanuel, Bennett and Richardson Reference Emanuel, Bennett and Richardson2007; Heikkinen Reference Heikkinen2000).
The younger women in the study also clearly recognised and accepted the ageing process, as Margaret attested:
Doesn't worry me … It's a natural course of life, that's what has to happen. (Margaret)
However, their younger age (69–73) meant their experiences of ageing were shaped less by the loss of others or the significant physical and mental changes that the older women in the study had undergone. Undoubtedly many appeared to be still coming to terms with their experiences of ageing:
Growing older it hit me suddenly and now only now because I'm in like the middle seventies I'm finding now I'm getting older. (Daphne)
These women appeared to be ‘arriving at feeling old’, as described by Minichiello, Browne and Kendig (Reference Minichiello, Browne and Kendig2000: 261), which is the first step in accepting oneself as growing old. This transition can be difficult as the stereotypical ‘old’ person is often associated with frailty, poor health and ultimately death (Hurd Reference Hurd2000; Minichiello, Browne and Kendig Reference Minichiello, Browne and Kendig2000; Roberto and McCann Reference Roberto and McCann2011). In truth, many of the younger women found it difficult to view ageing in a particularly positive light:
There's no positives really with growing older. There's no positives, they're all negative in that your lifespan is shortened, what you're able to do is less so I don't think that you can really say that when you get older … it's a thrill. (Margaret)
Margaret's comments echo many of the younger women's narratives whereby they struggled to identify things to look forward to with getting ‘old’ which they associated mostly with loss. Up until recently, their lives had been firmly shaped by high levels of interaction, activity and independence. The impact of declining health coinciding with their increased age meant that they seemed to be struggling to separate clearly their ageing from their illnesses. This experience was particularly salient for 69-year-old Joan who had worked up until the onset of several illnesses two years prior:
I know I've slowed down but … do you think of that as age or is that everything that's happened? Well I just automatically put it down to everything that's happened. Because I'll be honest if none of this had happened I'd still be working. (Joan)
For Joan the suddenness of her illnesses has taken a huge emotional toll on her and had impacted all aspects of her life. As Bury (Reference Bury1982) suggested, her illnesses had acted as a ‘biographical disruption’ which clearly dashed many of the assumptions that Joan had about herself and her identity, so firmly enmeshed with work, socialising and activity. Ageing for Joan had never been on the horizon:
I'll be honest I've never thought about I don't think about it … I don't think it's going to happen … I don't want to live to an old age and be a burden … I don't want to be in a nursing home. (Joan)
Joan's quote describes her fear of getting old and the negative connotations she associates with it. Additionally, it alludes to her firm identification of what Hurd (Reference Hurd2000) refers to as ‘not old’ whereby an individual strongly adheres to the idea that they do not conform to the stereotypical perception of an old person. Many older people themselves hold negative views of ‘the old’ which are not associated with chronological age but rather with a state of being. The fact that the descriptors are mostly negative and are associated with loss, burden and being unproductive suggests that transitioning through the ageing process, especially with declining health, can be an unsettling process (Hurd Reference Hurd2000; Minichiello, Browne and Kendig Reference Minichiello, Browne and Kendig2000).
Despite their age, some of the participants in the study described still feeling young inside:
I don't think about me as being an elderly lady … It's probably mentally that I don't feel my age, I don't feel 80 plus. (Beth)
I know I'm still the same person inside whether I'm 80 or whether I'm 18. (Florence)
In one sense these comments imply an identification with the concept of the ‘ageless self’ reflecting the continuation of their identity despite the physical changes that come with ageing (Kaufman Reference Kaufman1994). In some ways, this poses a dilemma for these women as their younger inner self can feel trapped in an ageing body (Biggs Reference Biggs2005). In particular, the presence of chronic diseases that dramatically limit their physical abilities compound this effect and make them feel like they are engaged in a dual struggle against the ageing body and the chronic illnesses (Biggs Reference Biggs2005; Charmaz Reference Charmaz1995).
In summary, this theme encompasses the women's overall acceptance of ageing as a natural and inevitable course in life. All older individuals must process and accept the physical, social and cognitive changes that will occur with ageing. However, there is often a negative and intensive focus on women as they age, and this can potentially complicate the way older women view ageing. How these women conceptualised and approached ageing, however, was influenced by their personal experiences and where they were along the ageing timeline. This finding suggests that growing older is itself a developmental process consisting of stages whereby one's mortality moves into conscious awareness, is deliberated upon and ultimately accepted. It suggests that there may be a continual mismatch between an older woman's internal younger identity and the external reality of growing old which may not be reconcilable.
General discussion
The aim of this research was to gain an understanding of how older women with PAD experience the ageing process. From the thematic analysis, three manifest themes were constructed that reflected consistent narratives across the women interviewed. Independence and control described the desire to be able to continue to do things without the assistance of others, allowing the participants to remain in charge of their lives and the decisions that need to be made as they grow older. Active and involved highlighted the importance of being physically and mentally busy. This engagement augmented the participants’ enjoyment of life and helped to protect from the effects of ageing. Acceptance of ageing discussed the women's explicit acknowledgement of the ageing process, a desire to keep on living, as well as the recognition of the implications of their age on their mortality.
The women in this study were extremely cognisant of the physical and mental changes that ageing with a chronic illness such as PAD had caused and were aware that this had implications for their future. However, these women's experiences of ageing were not defined or diminished by their illness or by their age. Instead, their narratives represented women who sought to stay in control of their lives in whatever way they could and make the decisions that would shape their futures. Growing old was viewed through a most pragmatic lens that allowed them to accept consciously the notion of ageing but also invited them to begin to contemplate the idea of dying.
There was a positivity and vitality in the narratives of the women that reflected individuals wanting to continue living life actively and autonomously. The idea that as we age we desire to continue on as before goes against the common stereotypes often held about growing old that we become sedentary and unproductive (Hitchcock Reference Hitchcock2015; Minichiello, Browne and Kendig Reference Minichiello, Browne and Kendig2000). The women in this study showed that ageing does not need to be a time of decline but rather can be one of growth and enjoyment, which has been reported previously (Terrill and Gullifer Reference Terrill and Gullifer2010; Villar Reference Villar2012). Certainly, most of the women expressed a sense of contentment, gratitude and happiness. Such emotional wellbeing possibly reflects the fact that ageing with a chronic illness had highlighted their mortality so that now they invest only in what is meaningful to them as they age. By focusing on what is important in life, the individual encounters a rich tapestry of emotional experiences that adds a poignant dimension to life (Carstensen et al. Reference Carstensen, Turan, Scheibe, Ram, Ersner-Hershfield, Samanez-Larkin, Brooks and Nesselroade2011). Consequently, for these women there was a sense that despite their health concerns and increased age, living was something to still be embraced. This appreciation of life was perhaps most eloquently conveyed by Dawn, who concluded our interview by declaring:
I would like to think that I could live the rest of my life as gracefully as I am at the moment. (Dawn)
Woven throughout the women's narratives, however, was the devastating impact that a chronic illness like PAD has on their physical and social lives. For many women in the developed world, ageing can bring a transition to a renewed sense of self with independence, freedom and renewed purpose (Davidson, DiGiacomo and McGrath Reference Davidson, DiGiacomo and McGrath2011). Although independence and a commitment to being active and engaged was a major theme that emerged in this study, the women were all constrained by the physical problems that are associated with PAD. This meant that they framed their world through the prism of a chronic illness; embracing what they were able to within the limitations of their bodies.
Although there is much conversation around our ageing population and the discourse acknowledges that chronic illness is an inevitability, little is really known about the actual experience of people who make up this part of the population. Women not only constitute a greater portion of the aged population, they are more likely to live with poor health. Within this context, it may be appropriate to consider ageing as a gendered phenomenon (Russell Reference Russell2007). It is, therefore, important to gain a thorough understanding of older women's experiences so that their needs can be specifically addressed through health services and policy direction (Davidson, DiGiacomo and McGrath Reference Davidson, DiGiacomo and McGrath2011).
This research provides insights into how older women with the chronic illness PAD experience ageing and how they wish to continue to live their lives. It demonstrates the importance that remaining independent can have on a woman's sense of self and suggests that poor physical health should not mean loss of autonomy or agency. Moreover, it reflects that ageing women clearly understand that their time is finite but this does not detract from their desire to live active, engaged and meaningful lives which is in contrast to the negative stereotypes of the old as burdens needing constant care (Minichiello, Browne and Kendig Reference Minichiello, Browne and Kendig2000).
This study relied on older women either actively contacting the researcher after seeing the flyer or being advised to by another health professional. This process may have attracted a certain type of women who was motivated and willing to speak about her experiences. Although these women were diverse in terms of income, marital status and ethnic decent, they were all urban-dwelling individuals who live in an area of high socio-economic advantage with generally adequate access to health care and other resources. Research completed in another area, such as remote or regional centres, may elicit different experiences.
This study adds to the body of literature around ageing and chronic illnesses that is moving away from the association between ageing and loss. This research embraces the idea that by respecting and supporting older women's ability to remain autonomous and engaged, they can continue to shape their lives, making the process of growing older more enjoyable and meaningful.
Ethical approval
Ethics approval was obtained from the Charles Sturt University Human Research and Ethics Committee.
Appendix
Interview schedule
• Can you tell me a little about your general health?
• Can you talk about how having peripheral arterial disease impacts your daily life?
• Can you talk about how peripheral arterial disease affects your interaction with friends or family?
• Can you tell me how you feel about growing older?
• Can you talk about the changes you have experienced as you have grown older? (Prompt: physical, emotional or situational)
• How do you think your health has affected the way you are ageing?
• How do you feel about your body's response to ageing?
• Can you describe the challenges you feel you face as you grow older?
• What about the positive experiences of growing older?
