Background
In recent years the scope of practice for palliative care has expanded. Whilst previously palliative care focused primarily on ensuring comfort for patients during the dying process [
1], more recently the value of palliative care has been recognized for people throughout the course of incurable or long term conditions, which may not be immediately terminal [
2]. This shift has encouraged a focus on living well with progressive disease, in order to optimize physical capabilities and function irrespective of prognosis. Indeed, rehabilitation is now considered integral to palliative care [
3,
4] with exercise a key component therapy [
5,
6] from which those with advanced progressive illnesses may benefit [
2,
7]. Exercise can help reduce risks of, or manage symptoms of, advanced disease and its treatment; helping improve psychosocial well-being and health-related quality of life [
8,
9]. The suggestion that people with cancer should participate in rehabilitation to ‘be productive’ and ‘function at a minimum level of dependency’ [
10], is also appropriate for other long term conditions. Exercise is also considered a useful supportive therapy alongside treatments for the underlying disease, offering patients an element of control, an enhanced sense of hope and positivity, and a return to some semblance of normality [
11,
12].
The Minimum Data Set for Specialist Palliative Care report [
13] showed a large increase in people accessing specialist palliative care services, especially those with non-cancer diagnoses. To adapt and meet the needs of the growing palliative care population, many hospices are adopting group models for delivery of outpatient services [
14], including exercise classes [
15,
16]. Much of the research relating to palliative rehabilitation is restricted to people with cancer, though evidence from other specialties supports the use of group exercise. For example, pulmonary rehabilitation classes improve symptoms, physical function and quality of life, including in people with advanced illness [
17]. A systematic review considering use of group exercise in the treatment of Motor Neurone Disease (MND) was inconclusive [
18], though individual studies found physical and psychological benefit, especially when exercise was commenced early in the course of the disease [
19]. Qualitative research examining the experience of palliative patients with mixed diagnoses, participating in group exercise is limited [
2,
20].
Previous studies have confirmed benefit from participation in exercise for people with cancer, who report a positive experience, but the evidence is limited for groups with multiple diagnoses and/or non-cancer conditions. Understanding the experience of these mixed groups is important as they are more reflective of the different conditions that come under current hospice care. Therefore, the aim of this study was to explore the experience of patients attending group exercise classes at a hospice; particularly in terms of impact upon personal outcomes, management of their illness, as well as perceived function and well-being.
Discussion
Previous qualitative research into palliative patient experience of group exercise has largely focused on cancer patients. This study takes a wider view by eliciting the experiences of people with cancer, respiratory diseases and MND, purposefully selected to better reflect a typical modern hospice population. Three main themes were identified ‘perceptions of palliative care and hospice’, ‘supportive relationships’ and ‘taking part in classes’, with patients’ experience primarily centered on the benefits of taking part. Physical gains reported included improvement and maintenance of function, increased strength and improved sleep, in line with existing research into the effect of exercise in advanced disease [
2,
24]. The supposition, that every indication that the body still works physically, as well as emotionally and spiritually, is proof of life [
25], explains the desire of Jo to make progress each week as she associated decline with impending death. Much of the previous rehabilitation research has focused on functional improvement, using physical outcome measures even when studying progressive neurological conditions where physical function tends to decline. Here we show that maintenance of function can also positively impact upon reported quality of life, complementing previous findings that psychosocial improvements can provide overall benefit even when physical goals are not being achieved [
7,
26].
Enjoyment of a sense of comradeship mentioned by one patient, and ‘friendship’ and ‘kinship’ mentioned by another, endorses findings concerning relationships highlighted in a previous study [
24]. Although not raised here, the data from Stevinson et al. suggest that small group sizes (e.g. 10 or fewer participants) encourage the building of these relationships over the course of the programme, preventing isolation [
24]. Support from others, regarded as a benefit of participating in group exercise, and ‘togetherness’ have previously been recognized as important elements for coping with terminal illness [
25]. Sharing personal information, reciprocal concern for each other and the comparing of self to others considered to be in a similar situation enabled a shared identity, established rapport and enhanced relationships [
24]. Studies in groups of patients with cancer diagnoses suggest the collective membership enables social support and solidarity among the group [
6,
24]. This study extends these findings and indicates this support is also present and important within groups with different cancer and non-cancer conditions. Another aspect not covered in previous literature but revealed through the present study was that the opportunity to share often relied on class format. Circuit classes facilitated by a therapist allowed patients the opportunity to talk as they exercised, whereas Pilates-based classes that were instructed by a therapist did not.
Comparing themselves to others perceived as being ‘less well’ produced feelings of gratefulness within participants, and provided motivation for exercising on the premise that if less well patients were ‘getting on with it’ then so should they. This could be considered an example of the ‘meaning-making process’ used as a coping strategy, where a positive result is found in a distressing situation, such as facing one’s own mortality [
25]. Social comparison can have both positive and negative consequences, for example in a study of people with MND, seeing others coping well with the condition was found to provide hope, while at times people were saddened by seeing others with the condition in a worse state [
27]. Inspiration to work harder through exercising with others has been previously recognized [
24], whereas concern for other patients and how that might affect individuals, highlighted in our findings, is rarely reported. Patient sadness but resignation to the inevitable deterioration of other group members; epitomized in Fran’s statement that “one of these days it’s gonna be us”, is recognized as a factor associated with, and seen as characterizing, death [
25]. Interestingly, none of the male participants spoke of sadness or attached any emotion to the prospect of deterioration of group members; supporting the suggestion that men and women may have different needs within groups [
28]; men preferring sharing of information whilst women may find intimacy, mutual support and emotional disclosure more important.
Patient appreciation that staff members adapted and tailored exercises, along with the lack of pressure to work harder than they feel able to, expressed in the interviews, corroborates previous data [
24]. Some patients desired to be ‘pushed’ or motivated by the therapist in order to test ability and capacity. Rather than valuing this motivation when tired or low in mood [
29], patients interviewed were appreciative of encouragement and permission to do less if they were tired. Confidence and trust, considered important aspects to the patient-therapist relationship [
30], were evident in comments regarding therapist knowledge, and their handling of situations with inclusiveness, empathy, patience and understanding.
Psychosocial benefits extending to self-empowerment, a desired outcome of palliative rehabilitation was reflected in Emma’s comment on how attending classes helped her take control in making her own decisions about her health, rather than being directed by others. This fits the ‘self-care’ model promoted by the Department of Health [
31] that includes self-care of long term conditions. The interviews also confirmed findings of a previous study [
24], that physical achievements and supportive relationships contribute to psychosocial benefits such as improved mood, increased confidence and a sense of achievement. Other research has identified that feelings of restricted living and separation, not just from people but also from roles, can result in feelings of isolation, adversely affecting quality of life [
25]. This may be why needing to be somewhere and having something to do, when no longer working, gave Jo a desired sense of purpose. It is suggested that such a sense of purpose and participation in activity can redress feelings of isolation and despondency [
25].
All these elements fed into psychosocial enhancement, the development of hope and improved quality life [
26], as did accomplishing tasks, e.g. exercises, and the support of staff. Patients’ initial focus in agreeing to attend classes was to gain some physical benefit, as described in the lower tier of Maslow’s hierarchy of need [
32]. In many cases this led to psychosocial benefit at the higher tiers of the pyramid that patients were not necessarily aware, of or aiming for, at the outset. It is interesting to note that an exercise class provided a supportive environment, with opportunity for personal reflection for at least one patient, and allowed others to feel confident and at ease with accessing other hospice services as they became less well.
Although having treatment, side-effects, fatigue, tiredness and aches experienced from exercise could have presented as barriers to group participation, they were not perceived as such by patients. This may be because the perceived physical and psychosocial benefits outweighed the experience of tiredness and aches, and were perceived as helping with fatigue, maintaining a semblance of normality and helping get through treatment. Exercise is considered to have ‘therapeutic’ benefits [
28], as was described by participants in the present study. No adverse events were mentioned. All patients described a positive and enjoyable experience, and a sense of hope, vital to enhancing psychological well-being, was evident in most of the interviews.
There are some limitations to this work. The study explored the experiences of a small number of participants, although such a sample is considered appropriate for a phenomenological approach. A larger sample however may have provided greater ethnic diversity, a more even gender split and a wider variety of diagnoses, as seen in the hospice population. Although the small number of interviews conducted in qualitative research can be said to restrict generalisability of findings, this study has produced core findings that corroborate previous studies. The possibility of ‘sole researcher bias’ in data analysis was addressed through supervision, the testing of codes and themes by two reviewers and discussions with members of the AHP team. Future research may consider the use of focus groups to further explore the benefits of group exercise in advanced illness, and enable added insight into the most important elements of group activities that contribute towards a positive experience.”
Acknowledgements
The authors would like to thank Jo Hockley, Andrew Goodhead and the Allied Health Professions Team at St Christopher’s Hospice for their support, discussion and encouragement, and Denise Brady for her assistance with literature searches.